Sleeping that is. I took one of my "magic pills" on Friday night and I actually slept through the night. Well, sort of. At least when I would wake up and shift positions I passed out straight away. Unfortunately that magic didn't work quite as well last night.
Yesterday was a big one. There was an Oktoberfest around the corner from my flat, just one block mind, so I thought it would be nice to go out and test the walking. I was okay getting to the end of the block, but after stopping for a slice, I was wiped out and getting back home was beyond a challenge. The hip wasn't too bad, but the left hip was hurting like hell and I thought my hands were going to fall off. I iced all four when I got home for a bit before we left for the island. I must have been exhausted because I slept most of the ride out there and then for another hour or so when I got home. Perhaps that is why I didn't sleep too well last night.
My mother just got back so I suppose I must get myself sorted with a shower, PT, etc. so I am signing off for now.
30 September, 2007
pics of the machines
My nephew hanging out with me whilst I am on the Game Ready machine. This one freezes and applies pressure to the hip. The millennium crutches are in the back.
*******The CPM Machine - Constant Passive Motion
*******
It is much more attractive with an adorable nephew posing in it...
*******
The CPM in action. It moves your leg back and forth from a 0' to 90' angle. It also weighs a hell of a lot!
*******
I just had to add this one of my nephew!
28 September, 2007
L O N G recovery ahead
Yesterday I had a lovely outing sitting outside across the street at Starbuck's. It was the first time I've really gone out for anything other than to and from a place. We sat out there for a little over two hours which was huge for me as I have not been able to sit in a chair that long since surgery. Unfortunately the fresh air didn't help me sleep any better though. I would kill for a good 8 hours in-a-row of sleep. Again, not so much for the pain, which is getting better on the operated side (unlike the rest of my body which is getting worse), but lack of comfort. I was even desperate enough to try to sleep on my stomach, which didn't last very long.
Today I went for my post-op today and the sutures were removed. They told me that I couldn't shower for a day or two as when they remove the sutures they put a tape with some sort of sticky glue stuff on top and want that to stay put for a while. I wish I had known that as I had thought I would be able to take a shower after the visit, so neglected getting up early to take one before. Oh well.
Dr. Kelly came in afterwards and asked how I was doing and moved my right leg around. He said that I could cut the CPM down to one hour a day, but I asked if I needed to keep it because I would have to pay another $350 for two additional weeks. Thankfully he said that was fine to return it and I've seen the last of that machine - they are coming to pick it up today! He then showed me the pictures they took when they were doing the surgery. I cannot believe how red it was inside, really bright, bright red! He showed where I had a bone spur and where they shaved that off and the other bone that was shaved down as well, and also my psoas before and as they were cutting it. All very amazing to look at. Unfortunately the post op report was not typed up yet, but I was told I could ring them next week and they would fax it over. We went over my PT and he said he actually wants me to go very slow, and that my recovery would take about six months. I was not too surprised from this, but it was still not thrilled about it. The key thing is he wants my psoas to stay slightly tight since I have the laxity issue, but at the same time not scar up completely. It is a very fine line and my rehab is going to be very specific because of my multiple issues. He already told me to change one of the exercises I was told to do as he does not want me to externally rotate the leg too much. He said internal rotation is fine for now. I asked if he could reaffirm this with the PT guys as they were having a hard time believing me about having to do only two hours on the CPM and four. I also asked him why he had to make four incisions and he said that was because they had to get to the other side of the bone to cut it down. Fair enough I suppose. He said also to use the brace as long as I want because he doesn't want me to hurt at all. I am to try to put more weight on the leg but only as I can tolerate, it's very important to not inflame the hip. Regarding the crutches I will most likely be on them for a few more weeks. I kept laughing in my head when everyone kept saying I'd be on them only two to three weeks. I knew this was going to take a long time to be able to walk again without pain. But I don't want to mess up everything that was done so I will do exactly as I am told. The last thing I could deal with is having to go through this all again (poo poo, touch wood, etc.).
After I had been home for a couple of hours I noticed that one of the incision site tapes had liquidy stuff seeping through it. I just rang the office and spoke to Arianna. She said that sometimes the incisions open up after the sutures are taken up and that is should heal by itself, and to keep and eye on it and make sure it stays dry. Hopefully it will do this quickly.
I think that's it for now. I'm tired so going to have a bit of a kip if possible.
Today I went for my post-op today and the sutures were removed. They told me that I couldn't shower for a day or two as when they remove the sutures they put a tape with some sort of sticky glue stuff on top and want that to stay put for a while. I wish I had known that as I had thought I would be able to take a shower after the visit, so neglected getting up early to take one before. Oh well.
Dr. Kelly came in afterwards and asked how I was doing and moved my right leg around. He said that I could cut the CPM down to one hour a day, but I asked if I needed to keep it because I would have to pay another $350 for two additional weeks. Thankfully he said that was fine to return it and I've seen the last of that machine - they are coming to pick it up today! He then showed me the pictures they took when they were doing the surgery. I cannot believe how red it was inside, really bright, bright red! He showed where I had a bone spur and where they shaved that off and the other bone that was shaved down as well, and also my psoas before and as they were cutting it. All very amazing to look at. Unfortunately the post op report was not typed up yet, but I was told I could ring them next week and they would fax it over. We went over my PT and he said he actually wants me to go very slow, and that my recovery would take about six months. I was not too surprised from this, but it was still not thrilled about it. The key thing is he wants my psoas to stay slightly tight since I have the laxity issue, but at the same time not scar up completely. It is a very fine line and my rehab is going to be very specific because of my multiple issues. He already told me to change one of the exercises I was told to do as he does not want me to externally rotate the leg too much. He said internal rotation is fine for now. I asked if he could reaffirm this with the PT guys as they were having a hard time believing me about having to do only two hours on the CPM and four. I also asked him why he had to make four incisions and he said that was because they had to get to the other side of the bone to cut it down. Fair enough I suppose. He said also to use the brace as long as I want because he doesn't want me to hurt at all. I am to try to put more weight on the leg but only as I can tolerate, it's very important to not inflame the hip. Regarding the crutches I will most likely be on them for a few more weeks. I kept laughing in my head when everyone kept saying I'd be on them only two to three weeks. I knew this was going to take a long time to be able to walk again without pain. But I don't want to mess up everything that was done so I will do exactly as I am told. The last thing I could deal with is having to go through this all again (poo poo, touch wood, etc.).
After I had been home for a couple of hours I noticed that one of the incision site tapes had liquidy stuff seeping through it. I just rang the office and spoke to Arianna. She said that sometimes the incisions open up after the sutures are taken up and that is should heal by itself, and to keep and eye on it and make sure it stays dry. Hopefully it will do this quickly.
I think that's it for now. I'm tired so going to have a bit of a kip if possible.
26 September, 2007
Quick PT update
I had PT today at 2 pm. My hip was really starting to hurt beforehand so I ended up taking a pain killer. I can't wait till I can stop so I will be able to finally enjoy a lovely glass of wine.
We cabbed it to PT and the drive surprisingly did not take too long (we thought it might with all the big shots at the UN this week). I have been walking better and definitely much improved in moving around since a week ago, and the boys at PT noticed. This of course meant that they had to go and give me harder things to do. I was amazed at how much more I was able to tolerate this week, it being only a week. My left hip has been popping on the outside a lot when I walk on crutches, so I've been trying to move without it doing this by taking smaller strides with my left leg. I started today with the bike, and was to do it between 10 and 20 minutes, as much as I could tolerate. By minute 9 I was buggered and both hips were hurting but I kept going till minute 13. Probably should have just stopped at 9 but I was trying to push through it. After that I was given a few new moves, such as turning my leg on a chair to stretch it out and kneeling on all fours then going to a squat position. I wasn't able to do a complete squat but was told that I was doing better than anticipated. I am sort of the "guinea pig" at the PT office since I have so many things wrong, they are always having to come up with new ways for me to do their exercises that will not hurt me more than help me. It always seems to be slightly comical. After that I did all the other exercises from last week and then iced for 10 minutes. I was there in total for almost 2 hours. I told my PT that all the time I banked before surgery should somehow be able to cancel all this out and I should have been able to walk out of the operating room in perfect condition. I know it's not possible but it's a bit old and tiring that I've been in PT since the end of December and now have at least another three months of it to "look forward to". ARGH. Sorry for the whinging, they are all very nice there, but it does get redundant after a while.
After we left the cabs were all off duty already, so we rang a car service to pick us up. This was much more civilised and definitely easier on my legs than last weeks nightmare of trying to get home during rush hour. I also made next weeks appointment for earlier in the day so hopefully we will not have any trouble finding a cab after the session.
I am knackered so will say good night here.
We cabbed it to PT and the drive surprisingly did not take too long (we thought it might with all the big shots at the UN this week). I have been walking better and definitely much improved in moving around since a week ago, and the boys at PT noticed. This of course meant that they had to go and give me harder things to do. I was amazed at how much more I was able to tolerate this week, it being only a week. My left hip has been popping on the outside a lot when I walk on crutches, so I've been trying to move without it doing this by taking smaller strides with my left leg. I started today with the bike, and was to do it between 10 and 20 minutes, as much as I could tolerate. By minute 9 I was buggered and both hips were hurting but I kept going till minute 13. Probably should have just stopped at 9 but I was trying to push through it. After that I was given a few new moves, such as turning my leg on a chair to stretch it out and kneeling on all fours then going to a squat position. I wasn't able to do a complete squat but was told that I was doing better than anticipated. I am sort of the "guinea pig" at the PT office since I have so many things wrong, they are always having to come up with new ways for me to do their exercises that will not hurt me more than help me. It always seems to be slightly comical. After that I did all the other exercises from last week and then iced for 10 minutes. I was there in total for almost 2 hours. I told my PT that all the time I banked before surgery should somehow be able to cancel all this out and I should have been able to walk out of the operating room in perfect condition. I know it's not possible but it's a bit old and tiring that I've been in PT since the end of December and now have at least another three months of it to "look forward to". ARGH. Sorry for the whinging, they are all very nice there, but it does get redundant after a while.
After we left the cabs were all off duty already, so we rang a car service to pick us up. This was much more civilised and definitely easier on my legs than last weeks nightmare of trying to get home during rush hour. I also made next weeks appointment for earlier in the day so hopefully we will not have any trouble finding a cab after the session.
I am knackered so will say good night here.
Spoke too soon
The last two nights I have been getting about 4-5 hours sleep and then waking up and not able to go back to sleep. It's not so much pain, as I took some pain pills before, but the fact that I just can't get comfortable on my back or on my side with a pillow between my legs. I am a bad sleeper to begin with and lack of comfort with sleeping positions is just exacerbating the issue.
Yesterday we came back to the city. Thankfully I wasn't queasy on the drive back; I thought I was going to be so ill on the way out to the island last week. I did the CPM for two hours and when we were taking my leg out of it, I must have twisted or turned a bit too much one way as my hip started screaming in agony. I was so annoyed as I hadn't needed to take a pain pill since I went to be on Monday night. After this incident the pain just got worse leading me to cave in and take a pain pill. I was quite a grump the rest of the night. (Until House came on - I LOVE HUGH LAURIE!!! I've been watching the complete set of Jeeves & Wooster - I put it on when I have to spend the time on the CPM - and I absolutely love it. They don't make television like they used to, for the most part. Anyway, I highly recommend watching this series, Stephen Fry and Hugh Laurie are completely brilliant!)
Haven't taken a pain pill yet today, trying to get on without it. I'll see how I'm doing before PT, may take one just to avoid the after effects of the torture. So not looking forward to this outing. Then again, at least it will get me outside for a bit.
Yesterday we came back to the city. Thankfully I wasn't queasy on the drive back; I thought I was going to be so ill on the way out to the island last week. I did the CPM for two hours and when we were taking my leg out of it, I must have twisted or turned a bit too much one way as my hip started screaming in agony. I was so annoyed as I hadn't needed to take a pain pill since I went to be on Monday night. After this incident the pain just got worse leading me to cave in and take a pain pill. I was quite a grump the rest of the night. (Until House came on - I LOVE HUGH LAURIE!!! I've been watching the complete set of Jeeves & Wooster - I put it on when I have to spend the time on the CPM - and I absolutely love it. They don't make television like they used to, for the most part. Anyway, I highly recommend watching this series, Stephen Fry and Hugh Laurie are completely brilliant!)
Haven't taken a pain pill yet today, trying to get on without it. I'll see how I'm doing before PT, may take one just to avoid the after effects of the torture. So not looking forward to this outing. Then again, at least it will get me outside for a bit.
24 September, 2007
Yay I finally got some sleep
Well it wasn't a complete night but at least 6 good hours so I'm quite happy about that. I was so desperate for it and it was desperately needed as well. Once more I didn't have to take a pain pill when I woke up, waited until about 10 am today! My parents think my walking with the crutches has gotten better too. Improvement all around methinks!
Today was a very busy day. I had a dentist appointment this morning. Yes you would think I had enough pain inflicted last week, but it was a long overdue visit. Thankfully I didn't have any cavities, and the cleaning wasn't too bad as the lovely lady numbed my mouth up first. I do have to go back next week to have some bonding done on 3 teeth as I have a few very sensitive spots and this seems to help them out, but thankfully it's not painful.
After the dentist I went for my eye exam. I hadn't had one in almost two years so thought it best that I got that out of the way whilst I am on the island as well. My eyes haven't gotten worse, and I got to get new glasses as well. All very exciting, considering my level of excitement has been nil. Don't get me wrong, I love spending time with my parents, but at least in the city I had some visitors. I'm going a bit mad being trapped out here in the boonies! Thankfully we will be returning to the city tomorrow and not back here till Saturday. I am completely wiped from the appointments though. The crutches, though much better than typical ones, still irritate my shoulders and hands, and it's quite tiring dragging yourself around with them as well.
I have another PT appointment on Wednesday afternoon and a post-op appointment with Dr. Kelly on Friday morning. I hope my stitches will be coming out and that he will tell me I can stop using the bloody CPM machine. It's not that I mind using it that much, it's just going to be another $350 for another 14 days, and am not looking forward to the additional cost. Bloody unbelievable the cost of these things!
Today was a very busy day. I had a dentist appointment this morning. Yes you would think I had enough pain inflicted last week, but it was a long overdue visit. Thankfully I didn't have any cavities, and the cleaning wasn't too bad as the lovely lady numbed my mouth up first. I do have to go back next week to have some bonding done on 3 teeth as I have a few very sensitive spots and this seems to help them out, but thankfully it's not painful.
After the dentist I went for my eye exam. I hadn't had one in almost two years so thought it best that I got that out of the way whilst I am on the island as well. My eyes haven't gotten worse, and I got to get new glasses as well. All very exciting, considering my level of excitement has been nil. Don't get me wrong, I love spending time with my parents, but at least in the city I had some visitors. I'm going a bit mad being trapped out here in the boonies! Thankfully we will be returning to the city tomorrow and not back here till Saturday. I am completely wiped from the appointments though. The crutches, though much better than typical ones, still irritate my shoulders and hands, and it's quite tiring dragging yourself around with them as well.
I have another PT appointment on Wednesday afternoon and a post-op appointment with Dr. Kelly on Friday morning. I hope my stitches will be coming out and that he will tell me I can stop using the bloody CPM machine. It's not that I mind using it that much, it's just going to be another $350 for another 14 days, and am not looking forward to the additional cost. Bloody unbelievable the cost of these things!
23 September, 2007
pain is getting worse
I am not sure why the pain is getting worse, but it seems to be. Yesterday I took it easy and barely did anything other than my rehab routine. I iced with the GameReady for a while, did the CPM for two hours and then after dinner did my PT. The exercises hurt even more than the first day I had to do them. Agony was an understatement.
After watching telly for a bit with my mother I did another hour of the GameReady hoping to numb my leg up before bed. We then decided I should take a second pain pill, hoping this would help me sleep through the night, or at least most of it.
I passed out about 11.30 pm and then at 12.30 am woke up with a start! I have no clue what woke me but whatever it was made me jump, which is not good for my hip at all. I have been getting leg spasms, supposedly from the psoas release, and it's driving me mad. I fell back to sleep and then slept till about 4.45 am. After I go up to go to the loo I was in pain so decided to take two more pain pills hoping I'd pass out again. Sadly this was not the case. I would sleep for a few minutes and then wake up again, this went on till about 8 am. I was feeling (am still actually) incredibly wonky from the pills so just vegged for a bit and finally just ate something. I'm now thinking the two pains pills wasn't the best idea. I think between the pain and not being able to move around whilst I sleep is what is keeping me up at night. Normally I sleep like a wild woman, all over the place and wake up in pretzel-like positions. Sleeping on my back is just making me ache all over even more. I tried sleeping on my left side again with a pillow between my legs but that doesn't seem to work for me.
After watching telly for a bit with my mother I did another hour of the GameReady hoping to numb my leg up before bed. We then decided I should take a second pain pill, hoping this would help me sleep through the night, or at least most of it.
I passed out about 11.30 pm and then at 12.30 am woke up with a start! I have no clue what woke me but whatever it was made me jump, which is not good for my hip at all. I have been getting leg spasms, supposedly from the psoas release, and it's driving me mad. I fell back to sleep and then slept till about 4.45 am. After I go up to go to the loo I was in pain so decided to take two more pain pills hoping I'd pass out again. Sadly this was not the case. I would sleep for a few minutes and then wake up again, this went on till about 8 am. I was feeling (am still actually) incredibly wonky from the pills so just vegged for a bit and finally just ate something. I'm now thinking the two pains pills wasn't the best idea. I think between the pain and not being able to move around whilst I sleep is what is keeping me up at night. Normally I sleep like a wild woman, all over the place and wake up in pretzel-like positions. Sleeping on my back is just making me ache all over even more. I tried sleeping on my left side again with a pillow between my legs but that doesn't seem to work for me.
22 September, 2007
sleepless in new york
Last night was Kol Nidre services. I always find the Kol Nidre prayers very moving and I try to attend every year. This year I was hoping to just make it through the first part of the service since I just had surgery this week. Miracle of miracles, somehow I made it for two hours sitting on a folding chair with my brace on. At that point I was hoping to make it through the rest of the services, but my hip was getting the better of me and I had to concede it was time to go home. I don't know if this made the rest of my night worse or if it was just a coincidence.
I decided I would go to bed later last night and by this hopefully sleep longer. Unfortunately my plan did not work. I was up around 4 am and even though I just laid in bed for two hours, sleep did not come. I was in pain when I woke up, but also achy all around as my body does not seem to like sleeping on my back. I did try for an hour or so to lay on my side with a pillow between my legs, but that didn't seem to help either.
After two hours of nodding off for a few minutes then waking again, I gave up and put the telly on. There is absolutely nothing on the telly that early on a Saturday morning so I just left something random on and was hoping to drift off, but I had no luck with that. By 8 am I was starving and had to get something to eat. Not wanting to wake my mother, I hobbled into the kitchen and was going to get some challah. My mother heard me though and followed me in. (As a side note, I know it's Yom Kippur but for medical reasons I'm not meant to fast).
After having a small bite I went back to bed and my mother came in and watched some telly with me. Again I just couldn't seem to drift off. Finally by about 10.30 or so I tried to fall asleep but kept having spasms in my legs, especially the right one. I was told this might occur from the Psoas release, and had been given muscle relaxers for it. I usually take one of those at night but I couldn't stand it so took one then, and also we put on the GameReady. I believe I finally fell asleep for a bit on and off till about 1pm.
I'm still knackered but at least took a shower. My mother had to go get me some more bandages, and when she gets back I will do the CPM machine and then my PT. That's the plan at least.
I decided I would go to bed later last night and by this hopefully sleep longer. Unfortunately my plan did not work. I was up around 4 am and even though I just laid in bed for two hours, sleep did not come. I was in pain when I woke up, but also achy all around as my body does not seem to like sleeping on my back. I did try for an hour or so to lay on my side with a pillow between my legs, but that didn't seem to help either.
After two hours of nodding off for a few minutes then waking again, I gave up and put the telly on. There is absolutely nothing on the telly that early on a Saturday morning so I just left something random on and was hoping to drift off, but I had no luck with that. By 8 am I was starving and had to get something to eat. Not wanting to wake my mother, I hobbled into the kitchen and was going to get some challah. My mother heard me though and followed me in. (As a side note, I know it's Yom Kippur but for medical reasons I'm not meant to fast).
After having a small bite I went back to bed and my mother came in and watched some telly with me. Again I just couldn't seem to drift off. Finally by about 10.30 or so I tried to fall asleep but kept having spasms in my legs, especially the right one. I was told this might occur from the Psoas release, and had been given muscle relaxers for it. I usually take one of those at night but I couldn't stand it so took one then, and also we put on the GameReady. I believe I finally fell asleep for a bit on and off till about 1pm.
I'm still knackered but at least took a shower. My mother had to go get me some more bandages, and when she gets back I will do the CPM machine and then my PT. That's the plan at least.
21 September, 2007
rough night
I'm not sure if my bad night was from too much walking/standing on Wednesday, the car ride on Thursday or a combination of both. Whichever it all equaled a rough night. I was exhausted and went to bed about 9.30 pm. I woke up in major pain around 11.40 pm. I couldn't believe it was only two hours since I'd gone to bed. I woke up again around 1 am and then around 5 am, then 7 am. I was in a lot of pain and discomfort as well as my back aching and my shoulders and wrists hurting from the crutches. I took a shower when I first got up to try to deal with the aching muscles all over, then used the GameReady for an hour or so to freeze my hip a bit. I just took a nap for about an hour and an half as I couldn't keep my eyes open. I am so glad that I do not have to go to work as there is no way I could handle it right now.
Currently I am waiting for my mum to return so I can do the CPM and my PT exercises. She's been an awfully long time, I am beginning to think she's run off! Can't say I'd blame her at this point, she was up with me all night!
Currently I am waiting for my mum to return so I can do the CPM and my PT exercises. She's been an awfully long time, I am beginning to think she's run off! Can't say I'd blame her at this point, she was up with me all night!
20 September, 2007
update
Arianna, Dr. Kelly's PA rang me on Tuesday evening and we reviewed a bit of what was done in surgery. I wrote down as much as I could. I will add the post-op report when I receive it, hopefully at my appointment with him next week.
Arianna stated the following:
Impingement was bad. Acetabulum had too much bone and was shaved down. The femur was also shaved down.
Labral tear was not as big as thought and the frayed portion was debrided. The rest of the labrum was intact so no sutures were needed.
There was a lot of inflammation and very red inside the joint, he debrided what he could.
Psoas release - area was very red, 10% was cut. Because of this I will be a bit weaker for the first 3 months but should eventually get back to "normal" strength.
I was also told that I should be on crutches 2-3 weeks depending on how my strength is and if I am able to walk without limping. But as with everything else, it's a 'wait and see' thing.
I also checked with my genetic doctors office and was told that my biopsied tissue is growing and when they have enough it will be sent to the research lab in Seattle. Still no word on my Echo, but they were following up and hopefully will have that by tomorrow.
So that's the medical bit of the update.
Yesterday I went to PT for the first time. I have to say it definitely helps that I know the guys I am working with there as it made me much more comfortable. We did some small movements with the green band which wasn't too bad. I was not able to do bridges, too painful for me. I went on the bike for a bit but at first could not to a full rotation as it was too painful, so after doing a semi back and forth for a few minutes was finally able to do a full rotation for about 5 more minutes, which was a huge accomplishment. As my little nephew says "I did it!". All in all they thought I did pretty well.
After PT was when the nightmare started though. We left the office, which is on 56th, about 5 pm. We were not able to get a cab on that street, it was the worst time as most were off duty, and the others all taken. I was told not to walk more than a block for a week or so, but my mum and I thought perhaps we could find a cab on 3rd Avenue. After crossing the avenue and waiting for a while, we realised this was not going to happen either. We walked up to 57th, and thought the other side looked more promising. This was not to be either. Eventually we crossed back to the other side of 57th and were going to ring my dad to come down with the car, but there was a bus that had arrived which goes up York near my apartment. I did not have my metrocard which is why we hadn't tried this sooner. I was desperate so sent my mum over to ask the man if he would kindly let me on sans metrocard. Bless his heart as he took pity on poor gimpy me and let us on. I thought I was going to pass out at this point. After 2 hours of PT and then standing for at least an half hour on the pavement was just too much. I still had to walk from York to First Avenue when we got off the bus, and that was very slow going. Every part of my body was killing me at this point. Thankfully we finally made it to my flat and I put the GameReady on immediately, took another pain pill and put on my ipod to try to rest.
Today I wanted to take it easy, but we had to come out to the island, so there was a lot of packing to do. Unfortunately this fell mostly to my poor exhausted mother, who needs an holiday after this for sure! Thankfully the drive was only an hour as I was so nauseous from the pain meds. As soon as we got home I went straight to bed for a bit, and when I woke up was in a lot of pain. I used the GameReady for about an hour and took (reluctantly) another pain pill. I am now wonky again. The less I move when I'm on the drugs the better as even walking makes me queasy. I know this doesn't sound promising but I am foregoing my PT exercises today as I just couldn't do it for all the money in the world. I promise tomorrow I will do it!
Arianna stated the following:
Impingement was bad. Acetabulum had too much bone and was shaved down. The femur was also shaved down.
Labral tear was not as big as thought and the frayed portion was debrided. The rest of the labrum was intact so no sutures were needed.
There was a lot of inflammation and very red inside the joint, he debrided what he could.
Psoas release - area was very red, 10% was cut. Because of this I will be a bit weaker for the first 3 months but should eventually get back to "normal" strength.
I was also told that I should be on crutches 2-3 weeks depending on how my strength is and if I am able to walk without limping. But as with everything else, it's a 'wait and see' thing.
I also checked with my genetic doctors office and was told that my biopsied tissue is growing and when they have enough it will be sent to the research lab in Seattle. Still no word on my Echo, but they were following up and hopefully will have that by tomorrow.
So that's the medical bit of the update.
Yesterday I went to PT for the first time. I have to say it definitely helps that I know the guys I am working with there as it made me much more comfortable. We did some small movements with the green band which wasn't too bad. I was not able to do bridges, too painful for me. I went on the bike for a bit but at first could not to a full rotation as it was too painful, so after doing a semi back and forth for a few minutes was finally able to do a full rotation for about 5 more minutes, which was a huge accomplishment. As my little nephew says "I did it!". All in all they thought I did pretty well.
After PT was when the nightmare started though. We left the office, which is on 56th, about 5 pm. We were not able to get a cab on that street, it was the worst time as most were off duty, and the others all taken. I was told not to walk more than a block for a week or so, but my mum and I thought perhaps we could find a cab on 3rd Avenue. After crossing the avenue and waiting for a while, we realised this was not going to happen either. We walked up to 57th, and thought the other side looked more promising. This was not to be either. Eventually we crossed back to the other side of 57th and were going to ring my dad to come down with the car, but there was a bus that had arrived which goes up York near my apartment. I did not have my metrocard which is why we hadn't tried this sooner. I was desperate so sent my mum over to ask the man if he would kindly let me on sans metrocard. Bless his heart as he took pity on poor gimpy me and let us on. I thought I was going to pass out at this point. After 2 hours of PT and then standing for at least an half hour on the pavement was just too much. I still had to walk from York to First Avenue when we got off the bus, and that was very slow going. Every part of my body was killing me at this point. Thankfully we finally made it to my flat and I put the GameReady on immediately, took another pain pill and put on my ipod to try to rest.
Today I wanted to take it easy, but we had to come out to the island, so there was a lot of packing to do. Unfortunately this fell mostly to my poor exhausted mother, who needs an holiday after this for sure! Thankfully the drive was only an hour as I was so nauseous from the pain meds. As soon as we got home I went straight to bed for a bit, and when I woke up was in a lot of pain. I used the GameReady for about an hour and took (reluctantly) another pain pill. I am now wonky again. The less I move when I'm on the drugs the better as even walking makes me queasy. I know this doesn't sound promising but I am foregoing my PT exercises today as I just couldn't do it for all the money in the world. I promise tomorrow I will do it!
19 September, 2007
almost 48 hours after...
This has been quite an "adventure". I will be as detailed as I can for now as I've just popped another pain pill before I start to hurt like hell again. Last night was rough.
In chronological order:
I set my alarm for 4.30 am on Monday as I was told to report to the hospital at 5.45 am. This turned out to be completely needless as I went to sleep around 8 pm on Sunday, woke up about 12.30 am and could not for the life of me get back to sleep. I've never been a good sleeper in the best scenario, so this was really no surprise to me. The worst part of no sleep was the fact it was making my fibromyalgia flare-up worse. Lack of sleep and stress are two of my three big triggers.
After I took a shower and put my pj's on (yes I wore pj's) we took a taxi to HSS around 5.15 am and were the first people to arrive in the ambulatory surgical waiting area. I filled out some forms and then waited for a nurse to call me to the back area. It was freezing cold in the waiting area so I couldn't sit still. Around 6.15 am I still hadn't been called so I went to the bathroom. Of course that was when the nurse came out to get me. I happen to be someone who wakes up every night to go to the loo. It doesn't seem to matter how much I drink or what I drink, but I invariably wake up around 4 am every night. This was no different that night other than I was awake already, so when I went to the bathroom I really didn't have much left over if you know what I mean. My mother came to get me and I went to follow the nurses to the back area. It was cold in there too, though not as bad. The rule is that they need you to pee to take a pregnancy test. I know there was no way I was unless it was immaculate conception, but the nurse insisted. I explained to her the situation and said that she would hook my IV up early as that would help.
Then the nurse asked me tons of questions, all of which I had already filled out on various forms. Redundancy was the word of the day it seems as this went on with every new person I met. My nurse was very nice but I think my small veins intimidated her. After her having one go on my right hand for the IV, she decided to get the "pro" in. Personally I think she should have done this at the beginning because she kept looking at my hand and saying how small the vein was and seemed pretty nervous about it. At least she only had one go though. I've had people try over and over when it was obvious they didn't have what I call "the touch". My nurse sent in the "pro" who definitely knew what she was doing, you could tell when she looked at my veins in my hand that this was going to be easy for he, which was a huge relief to me. She got it in one go, though I did think my arm was going to fall off because of how tight she put the tourniquet on. They put the drip on high so I would be able to go to the loo quickly, and that worked as I was able to give them a small sample, which thankfully was enough.
I had requested a specific woman anesthesiologist which was ok'd by her office and Dr. Kelly's office, but it seemed that she was busy elsewhere. I was a bit worried because the last anesthesiologist I had was a man who completely butchered me. Dr. Kelly came in to sign my leg and we went over a few things, and he reassured me that all the anesthesiologists were great at HSS. I was still weary but then a very handsome one walked in with a great sense of humour, so surprisingly that made everything alright! Funny that :-)
The OR nurse had come in to go over everything paper wise one last time. He was nice but I could barely understand a word he said, I don't know if it was because I was exhausted or he had a very thick accent. Either way we managed to get everything sorted and then we walked down to the OR. The OR was freezing as well, and the last thing I remember was the cute anesthesiologist telling me he was putting sedation in my IV and the nurse putting a nice toasty blanket on me.
I really do not recall much about post-op initially other than pain. Lots and lots of pain. I do remember telling anyone who would listen that I really, truly love demerol and they should please keep giving me some. Anyone who knows me is aware of my dislike for pills, and pain pill are usually something I stay away from as they make me loopy and I hate loopy, but it's amazing the transformation into addict I become after surgery. At some point I maxed out on the demerol so the nurse had to send a message to the handsome anesthesiologist to ask him if I could have a pain pill, which thankfully he said yes. I believe it was around this time that a very nice "helper" came over to try to convince me to eat something. I'm not much of an eater to begin with, and hospital food really doesn't make me want to eat more, so we finally agreed on some sort of roll with butter, and orange juice. This didn't seem to be a plan my stomach agreed to as after I had one bite I was nauseous. Thankfully that passed or I passed out, who can remember. At some point they put me in the CPM for an hour. I remember crying in agony at first. My mother was there, but then they told her she could leave for a while because I'd be on that for an hour. I was not happy about that, so kept bugging the nurses. After the CPM my mother was not back yet and I had to pee desperately, so the nurse said that I should get in a wheel chair to go to the loo. Earlier I had used a bedpan and that was bloody difficult just to move my hip a bit, so I was not too keen on her idea of actually moving my whole body. She insisted though and I suffered immensely. I'm sure she was doing her job but I doubt she was ready for the level of my agony and my incredibly talented way of letting everyone in the universe know of it. The only thing I can remember from getting me to the chair from the bed was me crying so hard I could not see a thing. The nurse did bring me a whole box of tissues though because of my crying. I couldn't stop. I've been through many surgeries and even my four wisdom teeth being removed, and anyone who has TMJ and has had to do that knows how painful that is. This pain though surpassed all others combined. I still don't know how I made it through. The nurse and the pt took me into the loo and helped me the whole time, but I'm sure the people out in the waiting room were able to hear me screaming in pain. When we opened the door to go back to the hall my mother was standing there and what a look on her face! She looked in as much pain as I was feeling. After this charming trip, they moved me into "phase 2".
In phase 2 they want you to sit in a chair instead of lying in a bed. The PT and nurse both agreed that it was best to leave me in the wheelchair and not even attempt to move me into the chair. This was a great idea because I had no strength to move as well as a huge amount of fear in doing so. I sat there for a while, still I had no concept of time, and then the PT decided it was time to get me walking on crutches. Somehow I managed to walk down one side of the room, and actually climb up their little practice stairs but it's all a blur to me. The pain had taken over my whole body so my brain had all but turned off completely. I said to the PT that a hip replacement would have been easier and she said "oh absolutely".
Finally I was approved to go home, it now being about 4 pm or so. We waiting downstairs with all my new toys for a cab. After we finally got one I thought going in the front would be easier. I don't know if this was a good idea or not, but I just wanted to get home so I could take another pain pill. The cab ride was horrid, every bump made me want to scream. Getting out and into my building is a fuzz to me as well.
I do realise that I've been whinging a bit about the pain this whole write up today, but i have to say that this is the worst most painful thing I have ever gone through. My poor mother is wiped out already. I asked her how she was going to make it three weeks with me if she couldn't handle a day and a half. Hopefully I will improve a bit each day so will not be as reliant on her. I did try to go to the loo last night myself when she was sleeping. I actually did really well, until I tried to get back into bed. I really hurt myself doing that and was a wreck, my dad actually heard me crying and woke up my mother. She was so tired she was in a very deep sleep. The whole point was to try to not wake her, but man was she mad at me for trying to do it myself.
Today I get to take a shower! I don't know how I'm going to get into my shower as it's not the easiest one, but I am determined. And this afternoon I have PT. I am not looking forward to trying to get into a cab again that is for sure.
I will write about what was actually done later as I am exhausted now from all of this typing.
In chronological order:
I set my alarm for 4.30 am on Monday as I was told to report to the hospital at 5.45 am. This turned out to be completely needless as I went to sleep around 8 pm on Sunday, woke up about 12.30 am and could not for the life of me get back to sleep. I've never been a good sleeper in the best scenario, so this was really no surprise to me. The worst part of no sleep was the fact it was making my fibromyalgia flare-up worse. Lack of sleep and stress are two of my three big triggers.
After I took a shower and put my pj's on (yes I wore pj's) we took a taxi to HSS around 5.15 am and were the first people to arrive in the ambulatory surgical waiting area. I filled out some forms and then waited for a nurse to call me to the back area. It was freezing cold in the waiting area so I couldn't sit still. Around 6.15 am I still hadn't been called so I went to the bathroom. Of course that was when the nurse came out to get me. I happen to be someone who wakes up every night to go to the loo. It doesn't seem to matter how much I drink or what I drink, but I invariably wake up around 4 am every night. This was no different that night other than I was awake already, so when I went to the bathroom I really didn't have much left over if you know what I mean. My mother came to get me and I went to follow the nurses to the back area. It was cold in there too, though not as bad. The rule is that they need you to pee to take a pregnancy test. I know there was no way I was unless it was immaculate conception, but the nurse insisted. I explained to her the situation and said that she would hook my IV up early as that would help.
Then the nurse asked me tons of questions, all of which I had already filled out on various forms. Redundancy was the word of the day it seems as this went on with every new person I met. My nurse was very nice but I think my small veins intimidated her. After her having one go on my right hand for the IV, she decided to get the "pro" in. Personally I think she should have done this at the beginning because she kept looking at my hand and saying how small the vein was and seemed pretty nervous about it. At least she only had one go though. I've had people try over and over when it was obvious they didn't have what I call "the touch". My nurse sent in the "pro" who definitely knew what she was doing, you could tell when she looked at my veins in my hand that this was going to be easy for he, which was a huge relief to me. She got it in one go, though I did think my arm was going to fall off because of how tight she put the tourniquet on. They put the drip on high so I would be able to go to the loo quickly, and that worked as I was able to give them a small sample, which thankfully was enough.
I had requested a specific woman anesthesiologist which was ok'd by her office and Dr. Kelly's office, but it seemed that she was busy elsewhere. I was a bit worried because the last anesthesiologist I had was a man who completely butchered me. Dr. Kelly came in to sign my leg and we went over a few things, and he reassured me that all the anesthesiologists were great at HSS. I was still weary but then a very handsome one walked in with a great sense of humour, so surprisingly that made everything alright! Funny that :-)
The OR nurse had come in to go over everything paper wise one last time. He was nice but I could barely understand a word he said, I don't know if it was because I was exhausted or he had a very thick accent. Either way we managed to get everything sorted and then we walked down to the OR. The OR was freezing as well, and the last thing I remember was the cute anesthesiologist telling me he was putting sedation in my IV and the nurse putting a nice toasty blanket on me.
I really do not recall much about post-op initially other than pain. Lots and lots of pain. I do remember telling anyone who would listen that I really, truly love demerol and they should please keep giving me some. Anyone who knows me is aware of my dislike for pills, and pain pill are usually something I stay away from as they make me loopy and I hate loopy, but it's amazing the transformation into addict I become after surgery. At some point I maxed out on the demerol so the nurse had to send a message to the handsome anesthesiologist to ask him if I could have a pain pill, which thankfully he said yes. I believe it was around this time that a very nice "helper" came over to try to convince me to eat something. I'm not much of an eater to begin with, and hospital food really doesn't make me want to eat more, so we finally agreed on some sort of roll with butter, and orange juice. This didn't seem to be a plan my stomach agreed to as after I had one bite I was nauseous. Thankfully that passed or I passed out, who can remember. At some point they put me in the CPM for an hour. I remember crying in agony at first. My mother was there, but then they told her she could leave for a while because I'd be on that for an hour. I was not happy about that, so kept bugging the nurses. After the CPM my mother was not back yet and I had to pee desperately, so the nurse said that I should get in a wheel chair to go to the loo. Earlier I had used a bedpan and that was bloody difficult just to move my hip a bit, so I was not too keen on her idea of actually moving my whole body. She insisted though and I suffered immensely. I'm sure she was doing her job but I doubt she was ready for the level of my agony and my incredibly talented way of letting everyone in the universe know of it. The only thing I can remember from getting me to the chair from the bed was me crying so hard I could not see a thing. The nurse did bring me a whole box of tissues though because of my crying. I couldn't stop. I've been through many surgeries and even my four wisdom teeth being removed, and anyone who has TMJ and has had to do that knows how painful that is. This pain though surpassed all others combined. I still don't know how I made it through. The nurse and the pt took me into the loo and helped me the whole time, but I'm sure the people out in the waiting room were able to hear me screaming in pain. When we opened the door to go back to the hall my mother was standing there and what a look on her face! She looked in as much pain as I was feeling. After this charming trip, they moved me into "phase 2".
In phase 2 they want you to sit in a chair instead of lying in a bed. The PT and nurse both agreed that it was best to leave me in the wheelchair and not even attempt to move me into the chair. This was a great idea because I had no strength to move as well as a huge amount of fear in doing so. I sat there for a while, still I had no concept of time, and then the PT decided it was time to get me walking on crutches. Somehow I managed to walk down one side of the room, and actually climb up their little practice stairs but it's all a blur to me. The pain had taken over my whole body so my brain had all but turned off completely. I said to the PT that a hip replacement would have been easier and she said "oh absolutely".
Finally I was approved to go home, it now being about 4 pm or so. We waiting downstairs with all my new toys for a cab. After we finally got one I thought going in the front would be easier. I don't know if this was a good idea or not, but I just wanted to get home so I could take another pain pill. The cab ride was horrid, every bump made me want to scream. Getting out and into my building is a fuzz to me as well.
I do realise that I've been whinging a bit about the pain this whole write up today, but i have to say that this is the worst most painful thing I have ever gone through. My poor mother is wiped out already. I asked her how she was going to make it three weeks with me if she couldn't handle a day and a half. Hopefully I will improve a bit each day so will not be as reliant on her. I did try to go to the loo last night myself when she was sleeping. I actually did really well, until I tried to get back into bed. I really hurt myself doing that and was a wreck, my dad actually heard me crying and woke up my mother. She was so tired she was in a very deep sleep. The whole point was to try to not wake her, but man was she mad at me for trying to do it myself.
Today I get to take a shower! I don't know how I'm going to get into my shower as it's not the easiest one, but I am determined. And this afternoon I have PT. I am not looking forward to trying to get into a cab again that is for sure.
I will write about what was actually done later as I am exhausted now from all of this typing.
17 September, 2007
pain
just a quick update as i am loopy on pain killers
not to scare anyone off from this type of surgery
but the PAIN IS WORSE THAN ANYTHING YOU CAN POSSIBLY IMAGINE IN THE WORLD.
which is why i am loopy
i have no idea what he did or didn't do b/c when he told me i was loopy on pain killers
not to scare anyone off from this type of surgery
but the PAIN IS WORSE THAN ANYTHING YOU CAN POSSIBLY IMAGINE IN THE WORLD.
which is why i am loopy
i have no idea what he did or didn't do b/c when he told me i was loopy on pain killers
14 September, 2007
The countdown is on
Today has been even more busy than anticipated. I knew it would be hectic because it's my last day at work for three weeks, but it's been non-stop talking to doctors, assistants, nurses, medical equipment people, etc.
First of all I received an email from Dr. Davis' (the genetic dr) assistant. I had emailed her on Wednesday after the echo to let her know how it went. Dr. Davis is out today so hopefully will hear about the report early next week. She also decided to arrange for the biopsy, so her assistant had to send me some forms to sign off on. I am relieved she's decided to have it done now as it will be one less cutting episode for me. I had a biopsy on my shoulder once and it was not an enjoyable event. So one less thing for me to deal with, yippee! She also informed me that my prep on Monday was scheduled for 7.30am and surgery for 8.00am. It helps to have insider contacts! I am very relieved that I am the first surgery scheduled.
After my chiro appointment (have I mentioned how much I love Active Release Therapy?!?), I came back to work and had two messages waiting for me. One was from a nurse at HSS and the other from biotech regarding the Game Ready unit.
First I rang the nurse back at HSS. She went through the typical items: no food or water after midnight, wear loose clothing, no jewelry, and confirmed that someone would be coming with me. Then she said I had to arrive at 5.45am! I couldn't believe it. What can they possibly do with me for over two hours. But I guess I shouldn't complain, I wanted to be the first surgery of the day. The nurse also said I should be going home by noon. I'm not holding my breath about this statement, we'll see if she was right. I know how things can get delayed in hospitals all too well.
Next I rang back the biotech lady. Just as a note, Game Ready (GR) units are not covered under medical insurance, as they feel you can just use ice packs and don't need the GR. This would be great if ice packs would stay in place and would apply compression, but they don't. It's just a sneaky way for the insurance companies to get out of paying for something that they really should cover! The lady said that I need to pay for it now and it would be at the hospital, so that's all sorted. I also had her fax me the receipts so I could send it into my FSA plan, I figured one less thing to do after surgery, and at least now I'm not loopy on pain meds. Plus I would like to be reimbursed as soon as possible. This item costs $295 for 21 days!!!
So I think that is as up-to-date as I can be for the moment. My next post will probably be after surgery, so have a great weekend!
First of all I received an email from Dr. Davis' (the genetic dr) assistant. I had emailed her on Wednesday after the echo to let her know how it went. Dr. Davis is out today so hopefully will hear about the report early next week. She also decided to arrange for the biopsy, so her assistant had to send me some forms to sign off on. I am relieved she's decided to have it done now as it will be one less cutting episode for me. I had a biopsy on my shoulder once and it was not an enjoyable event. So one less thing for me to deal with, yippee! She also informed me that my prep on Monday was scheduled for 7.30am and surgery for 8.00am. It helps to have insider contacts! I am very relieved that I am the first surgery scheduled.
After my chiro appointment (have I mentioned how much I love Active Release Therapy?!?), I came back to work and had two messages waiting for me. One was from a nurse at HSS and the other from biotech regarding the Game Ready unit.
First I rang the nurse back at HSS. She went through the typical items: no food or water after midnight, wear loose clothing, no jewelry, and confirmed that someone would be coming with me. Then she said I had to arrive at 5.45am! I couldn't believe it. What can they possibly do with me for over two hours. But I guess I shouldn't complain, I wanted to be the first surgery of the day. The nurse also said I should be going home by noon. I'm not holding my breath about this statement, we'll see if she was right. I know how things can get delayed in hospitals all too well.
Next I rang back the biotech lady. Just as a note, Game Ready (GR) units are not covered under medical insurance, as they feel you can just use ice packs and don't need the GR. This would be great if ice packs would stay in place and would apply compression, but they don't. It's just a sneaky way for the insurance companies to get out of paying for something that they really should cover! The lady said that I need to pay for it now and it would be at the hospital, so that's all sorted. I also had her fax me the receipts so I could send it into my FSA plan, I figured one less thing to do after surgery, and at least now I'm not loopy on pain meds. Plus I would like to be reimbursed as soon as possible. This item costs $295 for 21 days!!!
So I think that is as up-to-date as I can be for the moment. My next post will probably be after surgery, so have a great weekend!
12 September, 2007
There's something beating here inside my body and it's called a heart...
This was the coolest test I've ever had to do. It's like an ultrasound for those of you who have had those, but it's your own heart. I had a fab tech who explained absolutely everything that we were seeing on the screen, as well as telling me why each thing was important to check and what the ranges of normal were. Those of you that know me are aware of how much I love details and explanations, so I was thoroughly enjoying the test. I know it seems strange, but it just made it more like a hands on class experience more than a test. The results will be sent to my genetic doctor tomorrow, so hopefully Friday I will know what they are and if she wants to proceed with the biopsy.
Sadly this was the highlight of my week. My stress/anxiety level has been very high. This past Saturday I was walking along in the market and my left leg gave out. Other than almost falling on my face, it freaked me out because it is my right leg that is having surgery, my left leg is meant to be supporting me for the next month or so! Thankfully it hasn't happened again since Saturday (when it lasted for a couple of hours) but my left hip is actually hurting more than the right one now. I don't know how I'm going to make it through this, hopefully I will get some superhuman power in the next four days before surgery.
Shana tova! May you and your loved ones have a healthy and happy New Year.
Sadly this was the highlight of my week. My stress/anxiety level has been very high. This past Saturday I was walking along in the market and my left leg gave out. Other than almost falling on my face, it freaked me out because it is my right leg that is having surgery, my left leg is meant to be supporting me for the next month or so! Thankfully it hasn't happened again since Saturday (when it lasted for a couple of hours) but my left hip is actually hurting more than the right one now. I don't know how I'm going to make it through this, hopefully I will get some superhuman power in the next four days before surgery.
Shana tova! May you and your loved ones have a healthy and happy New Year.
11 September, 2007
Insurance
Last week got away from me and then I was on the island for the weekend so haven't had a chance to update the blog.
I spoke with the insurance company again on Friday and this time ended up
with someone who was actually helpful. I know it's hard to believe that a helpful person exists at an insurance company, but now we know at least one does!
I asked him to check about the ECHO. He didn't ask me for a code at all, just put me on hold and came back and said "yes you're covered at 100% so long as it's a network provider (which it is)". Gee that was easy, so I decided to try my luck. I decided I might as well ask about everything else regarding the biopsy since he seemed to be more educated than the daft cow I spoke to the day before. I listed off the six codes, he put me on hold again, and came back and said that it is all covered so long as it's a "medical necessity". I asked him if he could explain what exactly that was according to Oxford's definition and he was (shockingly) happy to. He said so long as your doctor feels it's necessary versus something like you want to have a blood test just for the heck of it. (why anyone would is beyond me, but you get the point).
I explained to him that the woman I spoke to the day before told me that I needed pre-authorisation for the lab codes I gave. He said that they do NOT require pre-authorisation, and so long as the doctor and facility are in network, it is covered. I checked with him about the lab in Seattle that my doctor said we would send my tissue to, as it is the one in the country that does this type of testing. To my huge relief he said that if it's the only lab that does that type and it's what the doctor needs, the facility would be viewed as "in network" and covered at that rate.
I am still weary that when all is done the insurance company will say it isn't covered, but I will just have to cross that bridge if/when I come to it. For now I'm going with the "it's all covered" idea!
I spoke with the insurance company again on Friday and this time ended up
with someone who was actually helpful. I know it's hard to believe that a helpful person exists at an insurance company, but now we know at least one does!
I asked him to check about the ECHO. He didn't ask me for a code at all, just put me on hold and came back and said "yes you're covered at 100% so long as it's a network provider (which it is)". Gee that was easy, so I decided to try my luck. I decided I might as well ask about everything else regarding the biopsy since he seemed to be more educated than the daft cow I spoke to the day before. I listed off the six codes, he put me on hold again, and came back and said that it is all covered so long as it's a "medical necessity". I asked him if he could explain what exactly that was according to Oxford's definition and he was (shockingly) happy to. He said so long as your doctor feels it's necessary versus something like you want to have a blood test just for the heck of it. (why anyone would is beyond me, but you get the point).
I explained to him that the woman I spoke to the day before told me that I needed pre-authorisation for the lab codes I gave. He said that they do NOT require pre-authorisation, and so long as the doctor and facility are in network, it is covered. I checked with him about the lab in Seattle that my doctor said we would send my tissue to, as it is the one in the country that does this type of testing. To my huge relief he said that if it's the only lab that does that type and it's what the doctor needs, the facility would be viewed as "in network" and covered at that rate.
I am still weary that when all is done the insurance company will say it isn't covered, but I will just have to cross that bridge if/when I come to it. For now I'm going with the "it's all covered" idea!
06 September, 2007
The good news is...
that the doctor didn't tell me there is nothing wrong with me and she has no idea what it is.
The bad news is that it is some sort of collagen disorder, to be named (possibly) at a later day, and there is nothing much one can do to fix this type of thing. I kind of knew that was coming though with all of my compulsive research.
Dr. Davis is a very lovely and (seems) knowledgeable genetic doctor who has seen many people in my situation. She was understanding and patient and asked many questions. I had brought with me as many records as I could regarding various surgeries, lab tests, scans and the sort. I also wrote up a list of two pages everything that is wrong with me and what hurts. Amazing how long that list was. The best question was "are you always in pain". Right then I knew I liked her because she "gets it". I told her the honest truth, that I can't remember a day that I haven't been in pain. Sadly when most people hear you say this, they don't believe you and start asking "so what hurts at this moment". I just tell them the list would be shorter regarding what doesn't hurt, and yet, they still have their doubts. I'm not trying to play for sympathy here, I just really liked the fact that this doctor seems to understand what kind of "life" I have been living.
I was with her for about an hour and a half. She spoke to me first and then examined me. Genetic doctors do a lot of measurements she said, and they sure do! She also said that it's ironic that one can look healthy and be such a mess inside. Another thing most people don't get. "Oh, you're not feeling well? But you look just fine, nothing can be wrong with you". You'd be amazed how much of that I get.
So onto the next steps. There is no exact test for condition X as I will call it now, for lack of the "official" title at present. However, if I do have one type of condition, a heart issue could possibly be related, so to play it safe she wants me to have and ECHO done. Ok, fair enough. I am not really that nervous about that since I'm getting cut-up the next, I'm more concerned about the latter.
The doctor also said she would like to get a biopsy of some tissue so they can study my collagen. We're hoping this can be done during surgery since I will be "opened" then. That leads me to the bigger issue.
BLOODY INSURANCE COMPANIES! Why can't you just ring up, ask a question, and get a proper answer? Can it truly be that difficult or do they make it a requirement to be a)obnoxious b)daft c)not helpful when they hire people? I rang up to check that the ECHO would be covered. The response was "what is the code". I don't know, is there more than one code for an ECHO (obviously a daft question from the sound of her reply). "I can't help you without a code". Ok, fair enough, I will try to get that and ring back, but I have a bunch of OTHER codes I needed to check with her about the biopsy. She places me on hold and then finally comes back. "All codes are billable, but subject to medical necessity". I swear, a simple yes or no would be brilliant!
Ok, so what is medical necessity and how do I prove that? "You'll have to ask your doctor, she would know". These people are just so helpful. She also told me that if they are going to take the biopsy during the surgery, I need a new approval for the surgery. I said, I have that already, can't this doctor, the doctor NOT doing the surgery, just send in a separate request? Finally she concedes that yes, this can be done as well. It's like smashing ones' head in a brick wall.
As it stands, I rang and sent an email to Dr. Davis's office with this information and they are looking into it.
The moral of this story is, well, there is none, just a statement - INSURANCE COMPANIES ARE CRAP!!! But then again, you knew that already, didn't you?
The bad news is that it is some sort of collagen disorder, to be named (possibly) at a later day, and there is nothing much one can do to fix this type of thing. I kind of knew that was coming though with all of my compulsive research.
Dr. Davis is a very lovely and (seems) knowledgeable genetic doctor who has seen many people in my situation. She was understanding and patient and asked many questions. I had brought with me as many records as I could regarding various surgeries, lab tests, scans and the sort. I also wrote up a list of two pages everything that is wrong with me and what hurts. Amazing how long that list was. The best question was "are you always in pain". Right then I knew I liked her because she "gets it". I told her the honest truth, that I can't remember a day that I haven't been in pain. Sadly when most people hear you say this, they don't believe you and start asking "so what hurts at this moment". I just tell them the list would be shorter regarding what doesn't hurt, and yet, they still have their doubts. I'm not trying to play for sympathy here, I just really liked the fact that this doctor seems to understand what kind of "life" I have been living.
I was with her for about an hour and a half. She spoke to me first and then examined me. Genetic doctors do a lot of measurements she said, and they sure do! She also said that it's ironic that one can look healthy and be such a mess inside. Another thing most people don't get. "Oh, you're not feeling well? But you look just fine, nothing can be wrong with you". You'd be amazed how much of that I get.
So onto the next steps. There is no exact test for condition X as I will call it now, for lack of the "official" title at present. However, if I do have one type of condition, a heart issue could possibly be related, so to play it safe she wants me to have and ECHO done. Ok, fair enough. I am not really that nervous about that since I'm getting cut-up the next, I'm more concerned about the latter.
The doctor also said she would like to get a biopsy of some tissue so they can study my collagen. We're hoping this can be done during surgery since I will be "opened" then. That leads me to the bigger issue.
BLOODY INSURANCE COMPANIES! Why can't you just ring up, ask a question, and get a proper answer? Can it truly be that difficult or do they make it a requirement to be a)obnoxious b)daft c)not helpful when they hire people? I rang up to check that the ECHO would be covered. The response was "what is the code". I don't know, is there more than one code for an ECHO (obviously a daft question from the sound of her reply). "I can't help you without a code". Ok, fair enough, I will try to get that and ring back, but I have a bunch of OTHER codes I needed to check with her about the biopsy. She places me on hold and then finally comes back. "All codes are billable, but subject to medical necessity". I swear, a simple yes or no would be brilliant!
Ok, so what is medical necessity and how do I prove that? "You'll have to ask your doctor, she would know". These people are just so helpful. She also told me that if they are going to take the biopsy during the surgery, I need a new approval for the surgery. I said, I have that already, can't this doctor, the doctor NOT doing the surgery, just send in a separate request? Finally she concedes that yes, this can be done as well. It's like smashing ones' head in a brick wall.
As it stands, I rang and sent an email to Dr. Davis's office with this information and they are looking into it.
The moral of this story is, well, there is none, just a statement - INSURANCE COMPANIES ARE CRAP!!! But then again, you knew that already, didn't you?
05 September, 2007
Yet another doctors visit
Tomorrow is my appointment with the genetic doctor. I don't know if I'm more afraid of getting a diagnosis or having another doctor tell me that they can't suss out what is wrong with me. I'm thinking it's the latter of the two. Then again, if I get a diagnosis that does not mean that they will have a "fix" for what is wrong with me. It's all very much twisting my brain into a pretzel.
I admit at this point in my life I am completely and utterly sick of doctors. After my experiences with some of them you begin to wonder if they actually know what they are doing. Yes, I've been lucky with a few, my hand surgeon for example was brilliant. However it did take me three years and seven doctors to find him. In the course of that adventure, one *supposed* top hand surgeon saw me a year or so into the hunt and said that there was nothing wrong with me and the next time my hand hurt to call him to complain and not my mother. You have to love that bedside manner! I was young at the time and completely devastated by that. The git had me thinking that it was all in my head and to be honest, after all the wacky things I've had wrong, you do start to wonder if it is all "in your head".
So that leaves tomorrow, and the fear of another doctor saying "we don't know what's wrong with you" and then the self doubt of thinking that perhaps it really is "just in my head". Yes I know not all of it is, but if you had the list in front of you that I've just written up for the doctor of all of my pains and symptoms and issues, it's hard to believe it's just one person with all of these complaints.
On an aside, I've been flipping out about the crutches situation. When I tried the forearm crutches at PT last week, they did not feel that great. Since then I have been debating whether to get the millennium crutches that I have read about on the different boards. I finally decided to just go ahead and order them because I've heard such good things and at this point, I have to make a decision one way or another. Hopefully it's the right one for my hands as well as my hips.
I admit at this point in my life I am completely and utterly sick of doctors. After my experiences with some of them you begin to wonder if they actually know what they are doing. Yes, I've been lucky with a few, my hand surgeon for example was brilliant. However it did take me three years and seven doctors to find him. In the course of that adventure, one *supposed* top hand surgeon saw me a year or so into the hunt and said that there was nothing wrong with me and the next time my hand hurt to call him to complain and not my mother. You have to love that bedside manner! I was young at the time and completely devastated by that. The git had me thinking that it was all in my head and to be honest, after all the wacky things I've had wrong, you do start to wonder if it is all "in your head".
So that leaves tomorrow, and the fear of another doctor saying "we don't know what's wrong with you" and then the self doubt of thinking that perhaps it really is "just in my head". Yes I know not all of it is, but if you had the list in front of you that I've just written up for the doctor of all of my pains and symptoms and issues, it's hard to believe it's just one person with all of these complaints.
On an aside, I've been flipping out about the crutches situation. When I tried the forearm crutches at PT last week, they did not feel that great. Since then I have been debating whether to get the millennium crutches that I have read about on the different boards. I finally decided to just go ahead and order them because I've heard such good things and at this point, I have to make a decision one way or another. Hopefully it's the right one for my hands as well as my hips.
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