no energy to go into it but after last week seeing my phyiatrist and getting another exam i am in even more pain than i was - plus i now have lower back pain shooting down to my right foot killing me - couldn't stand on my leg on sat.
so not in a happy place right now.
Showing posts with label physiatrist. Show all posts
Showing posts with label physiatrist. Show all posts
17 May, 2010
16 March, 2010
More catching up...
Maybe separating it by body part will be easiest:
1)Neck was still a wreck so continued through beginning of January. I felt we weren’t getting anywhere and well, obviously my PT agreed, because she broke up with me. We both thought I needed to see another doctor. I was at my wits end and wasn’t sure which direction to go in seeing as though I’ve been to every kind of doctor I can think of. I got the name of a spine surgeon – Dr. Michael Neuwirth - from my hand dr. I made an appointment to see him after my hand surgery (see below). He said that he wanted to do the following: a 2 level anterior cervical discectomy and osteophytectomy with a 2 level anterior cervical fusion using structural allograft and an anterior cervical plate. I think I walked around in shock that day. Not only did this sound huge, the doctor didn’t take my insurance and at the time Beth Israel still wasn’t out of negotiations w/ UHC. After flipping out for a couple of days and emailing the dr with my million and one questions – I started to think more sensibly. I realised I needed more opinions. My friends that are chiros were already dead set against it. Can’t really blame them. I made an appointment with my physiatrist, and continued to research. What I found were reports that once your spine is fused, it puts more pressure on the adjacent joints and they begin to degenerate. That was the last thing I need because my spine is already degenerating faster than most people my age. I saw Dr. Panagos about a week later and told him what was going on – still the pain was horrific and I have no life other than work and the couch. He felt the surgery was pretty heavy duty as well and not necessarily the best idea. He’s seen patients have that type of surgery and not any relief. He was v. nice and you could tell he really cares about his patients, and empathises with the length of time I’ve had to deal with the medical and insurance companies spinning me around and around. Something really needs to be done to sort out the medical industry in this country. I should know! He gave me another exam and said there were a couple of injections into the muscles he was thinking about. I think his feeling was that the muscles might be causing more pain than the spine. Heck I’ll try anything that is not the surgery at this point. The first idea was Botox – yes I was shocked. Supposedly it can release the muscle and help with the nerves and calm the area down. I don’t know the technical aspects but that was the gist. It is v. expensive and he wasn’t sure we’d get approval from UHC. Miracle of miracles we did. It had to be ordered from a special pharmacy and sent overnight as it has to be kept refrigerated. I had the injection almost two weeks ago. Dr. P said it would take about two weeks to work, and he didn’t do too much as he didn’t want me to get too lax, and said we could “top it off” if need be. Well, so far I’m not seeing much improvement. Two weeks will be in two days, and I’m meant to ring him and let him know what is going on. The first weekend I was a little sore but felt ok. Then last week most of the week I was in a lot of pain from the injections. I had 8 into various muscles on my right side. I was a bit better this weekend – even cleaned my kitchen b/f the neck flipped out - and then once I got to work and sat all day at the computer I was a wreck again. I changed the setting on my chair to make sure I am sitting more upright to see if that helps as well. It’s not easy though, the chair keeps changing back itself! Anyway, the neck is not happy right now. Did go to the gym at lunch – been trying to give the legs a bit of exercise a couple of times a week since I can’t really do too much with the rest. So, still trying to be positive and hope it miraculously kicks in any minute. Fingers crossed.
2)Hand surgery #5! Wow – who ever thought I’d be saying that? This was minor COMPARED to all of my other hand surgeries. Thankfully!!! It was for Dequervain's tendonitis Dr. Melone did my surgery, like I would let anyone else touch my hands, and it went pretty well. I wasn’t very nervous – think I was in shock that I had to have another hand surgery – or medical procedure – again. I swear it is non-stop. Surgery was 21 January at Beth Israel Hospital. Of course they were in the middle of a dispute with UHC (they’ve finally resolved but I read somewhere it would only be retroactive to 1 March, which doesn’t help me – so not happy at all as I owe over $2000 to the hospital – at least the dr’s were covered though) and I just couldn’t put this off anymore. I’d been waiting for a long time and my patience had run out. Two years was just too long to be sleeping with a splint. I requested the first surgery as it is one of the most important things to do. Seriously, you can’t eat, you’ve not slept the night before, so it motivates you to get it over with as soon as possible. That and since I have been on e of those patients that made everyone else’s surgeries get delayed, I know better. So at the hospital at 6am! Of course they don’t tell you the doctors don’t show up until 8.30! Beth Israel has quite a system. They gather a group together in the waiting room, then bring you back to changing areas. They say you can see the person you came with after you change. Just so you know, they don’t . I had to beg to let my mother come up before my surgery as there was no way I was going in w/o seeing her and I knew she was freaking out as well since she thought that we could see each other later too. This is what we were told. Beware of liars…I get changed, then they take you one by one to ask a couple of questions. After that they take the group of you up in a lift to the floor above, and walk you to the pre-op/post-op room. After waiting for a while, timing depends on where you are seated, the nurses seem to start at the far end and work their way down, a nurse finally came to ask me a million questions and do blood pressure, pregnancy tests, etc. I asked her if my mother could come up and gave her a whole spiel about how I have had so many surgeries and my mother and I have a “thing” and I need to see her b/c I won’t go into the OR w/o seeing her. I was nice and she was like ok, then fobbed it off on another nurse. The other nurse was v. busy, thing she was the head nurse, and forgot, so I gently reminded her and then she did it right away and someone sent up my mother. She was so relieved, as was I. Of course it is also nice to have company when you still have another hour or so to wait for the doctor. The anesthesiologist came by and we went over everything, Dr. Patel was his name. He was v. nice and good sense of humour. Nothing worse than a doctor w/o a personality! So we’re waiting and waiting and then at about 8.20 my tummy felt wonky so just to play it safe I went to the loo. Of course this was when Dr. Melone comes in, so my mother told him where I was and he walks down and even though I’m still in the loo – being perfectly fine –have the craziest tummy – he’s outside calling my name. I came out and was like – hello – I had to use the toilet! But all in good fun, we get on v. well. He was saying he couldn’t believe it’s our no. 5 and how long we’ve been doing this – for 18 years! The intern/resident dr was all shocked like how can you be so casual w/ him? I think they’re all scared of his reputation but I’ve never been intimidated – heck it’s my body – I’m going to deal with the doctor as I please. Besides, he is a v. funny guy when you get to know him. Unfortunately he still supports Georgetown basketball – his greatest flaw. I went to SU so we argue about Bball.Dr. M signs off on my arm and I get wheeled into the OR. I was actually looking forward to this b/c my neck had been killing me and I had not slept in forever, so sedation sounded like a gift from G-d! They did a local on my hand and wrist, about 3 or 4 injections, and you are awake because they want to make sure the area is numbed up. Afterwards they knock you out – the best part! Afterwards they bring you back to the same room you started out it – and I was so tired but relaxed. My neck didn’t hurt for a whole hour, so I didn’t want to get out of the bed. I kept asking for more pain meds and not to be moved as I was afraid my neck would start to hurt again. I have to say everyone was most accommodating. They let my mother come up for a couple of minutes to see me then sent her away until I was able to move to the chair area where they have some snacks and drinks to eat. All in all nothing like the other hand ops – a lot less painful for sure. I had to wear a splint for about 11 days, then they took that off and the stitches out, gave me some exercises to do and sent me home. Wrist is still a bit sore and swollen, and they didn’t warn me that my thumb would be numb-ish for a while, but all in all it’s good.
3)I had to have another abscess drained the week of Christmas. Again, no idea what caused it. Then this week that area started hurting again. Seriously, I really would think I’m a hypochondriac if it was not proved that there is something wrong when I get to the dr’s office. I went to Dr. A on Friday and he said that – yes, get ready for it – I had another infection but it was a fistula this time. I don’t even know what to say or do anymore. This is ludicrous. There is no proof that I have Crohn’s – even the dr’s say that – but yet I keep getting these infections. He put me on both Flagyl and Cipro for a week (in the middle of the week at present) and going back on Thursday at 2pm. Yes, it is a miracle I’m not in a mental institution yet. Plus you can’t drink on Flagyl so tmrw will be the first St. Patrick’s day I’m sober since university. Well, I need to do my laundry anyway…
1)Neck was still a wreck so continued through beginning of January. I felt we weren’t getting anywhere and well, obviously my PT agreed, because she broke up with me. We both thought I needed to see another doctor. I was at my wits end and wasn’t sure which direction to go in seeing as though I’ve been to every kind of doctor I can think of. I got the name of a spine surgeon – Dr. Michael Neuwirth - from my hand dr. I made an appointment to see him after my hand surgery (see below). He said that he wanted to do the following: a 2 level anterior cervical discectomy and osteophytectomy with a 2 level anterior cervical fusion using structural allograft and an anterior cervical plate. I think I walked around in shock that day. Not only did this sound huge, the doctor didn’t take my insurance and at the time Beth Israel still wasn’t out of negotiations w/ UHC. After flipping out for a couple of days and emailing the dr with my million and one questions – I started to think more sensibly. I realised I needed more opinions. My friends that are chiros were already dead set against it. Can’t really blame them. I made an appointment with my physiatrist, and continued to research. What I found were reports that once your spine is fused, it puts more pressure on the adjacent joints and they begin to degenerate. That was the last thing I need because my spine is already degenerating faster than most people my age. I saw Dr. Panagos about a week later and told him what was going on – still the pain was horrific and I have no life other than work and the couch. He felt the surgery was pretty heavy duty as well and not necessarily the best idea. He’s seen patients have that type of surgery and not any relief. He was v. nice and you could tell he really cares about his patients, and empathises with the length of time I’ve had to deal with the medical and insurance companies spinning me around and around. Something really needs to be done to sort out the medical industry in this country. I should know! He gave me another exam and said there were a couple of injections into the muscles he was thinking about. I think his feeling was that the muscles might be causing more pain than the spine. Heck I’ll try anything that is not the surgery at this point. The first idea was Botox – yes I was shocked. Supposedly it can release the muscle and help with the nerves and calm the area down. I don’t know the technical aspects but that was the gist. It is v. expensive and he wasn’t sure we’d get approval from UHC. Miracle of miracles we did. It had to be ordered from a special pharmacy and sent overnight as it has to be kept refrigerated. I had the injection almost two weeks ago. Dr. P said it would take about two weeks to work, and he didn’t do too much as he didn’t want me to get too lax, and said we could “top it off” if need be. Well, so far I’m not seeing much improvement. Two weeks will be in two days, and I’m meant to ring him and let him know what is going on. The first weekend I was a little sore but felt ok. Then last week most of the week I was in a lot of pain from the injections. I had 8 into various muscles on my right side. I was a bit better this weekend – even cleaned my kitchen b/f the neck flipped out - and then once I got to work and sat all day at the computer I was a wreck again. I changed the setting on my chair to make sure I am sitting more upright to see if that helps as well. It’s not easy though, the chair keeps changing back itself! Anyway, the neck is not happy right now. Did go to the gym at lunch – been trying to give the legs a bit of exercise a couple of times a week since I can’t really do too much with the rest. So, still trying to be positive and hope it miraculously kicks in any minute. Fingers crossed.
2)Hand surgery #5! Wow – who ever thought I’d be saying that? This was minor COMPARED to all of my other hand surgeries. Thankfully!!! It was for Dequervain's tendonitis Dr. Melone did my surgery, like I would let anyone else touch my hands, and it went pretty well. I wasn’t very nervous – think I was in shock that I had to have another hand surgery – or medical procedure – again. I swear it is non-stop. Surgery was 21 January at Beth Israel Hospital. Of course they were in the middle of a dispute with UHC (they’ve finally resolved but I read somewhere it would only be retroactive to 1 March, which doesn’t help me – so not happy at all as I owe over $2000 to the hospital – at least the dr’s were covered though) and I just couldn’t put this off anymore. I’d been waiting for a long time and my patience had run out. Two years was just too long to be sleeping with a splint. I requested the first surgery as it is one of the most important things to do. Seriously, you can’t eat, you’ve not slept the night before, so it motivates you to get it over with as soon as possible. That and since I have been on e of those patients that made everyone else’s surgeries get delayed, I know better. So at the hospital at 6am! Of course they don’t tell you the doctors don’t show up until 8.30! Beth Israel has quite a system. They gather a group together in the waiting room, then bring you back to changing areas. They say you can see the person you came with after you change. Just so you know, they don’t . I had to beg to let my mother come up before my surgery as there was no way I was going in w/o seeing her and I knew she was freaking out as well since she thought that we could see each other later too. This is what we were told. Beware of liars…I get changed, then they take you one by one to ask a couple of questions. After that they take the group of you up in a lift to the floor above, and walk you to the pre-op/post-op room. After waiting for a while, timing depends on where you are seated, the nurses seem to start at the far end and work their way down, a nurse finally came to ask me a million questions and do blood pressure, pregnancy tests, etc. I asked her if my mother could come up and gave her a whole spiel about how I have had so many surgeries and my mother and I have a “thing” and I need to see her b/c I won’t go into the OR w/o seeing her. I was nice and she was like ok, then fobbed it off on another nurse. The other nurse was v. busy, thing she was the head nurse, and forgot, so I gently reminded her and then she did it right away and someone sent up my mother. She was so relieved, as was I. Of course it is also nice to have company when you still have another hour or so to wait for the doctor. The anesthesiologist came by and we went over everything, Dr. Patel was his name. He was v. nice and good sense of humour. Nothing worse than a doctor w/o a personality! So we’re waiting and waiting and then at about 8.20 my tummy felt wonky so just to play it safe I went to the loo. Of course this was when Dr. Melone comes in, so my mother told him where I was and he walks down and even though I’m still in the loo – being perfectly fine –have the craziest tummy – he’s outside calling my name. I came out and was like – hello – I had to use the toilet! But all in good fun, we get on v. well. He was saying he couldn’t believe it’s our no. 5 and how long we’ve been doing this – for 18 years! The intern/resident dr was all shocked like how can you be so casual w/ him? I think they’re all scared of his reputation but I’ve never been intimidated – heck it’s my body – I’m going to deal with the doctor as I please. Besides, he is a v. funny guy when you get to know him. Unfortunately he still supports Georgetown basketball – his greatest flaw. I went to SU so we argue about Bball.Dr. M signs off on my arm and I get wheeled into the OR. I was actually looking forward to this b/c my neck had been killing me and I had not slept in forever, so sedation sounded like a gift from G-d! They did a local on my hand and wrist, about 3 or 4 injections, and you are awake because they want to make sure the area is numbed up. Afterwards they knock you out – the best part! Afterwards they bring you back to the same room you started out it – and I was so tired but relaxed. My neck didn’t hurt for a whole hour, so I didn’t want to get out of the bed. I kept asking for more pain meds and not to be moved as I was afraid my neck would start to hurt again. I have to say everyone was most accommodating. They let my mother come up for a couple of minutes to see me then sent her away until I was able to move to the chair area where they have some snacks and drinks to eat. All in all nothing like the other hand ops – a lot less painful for sure. I had to wear a splint for about 11 days, then they took that off and the stitches out, gave me some exercises to do and sent me home. Wrist is still a bit sore and swollen, and they didn’t warn me that my thumb would be numb-ish for a while, but all in all it’s good.
3)I had to have another abscess drained the week of Christmas. Again, no idea what caused it. Then this week that area started hurting again. Seriously, I really would think I’m a hypochondriac if it was not proved that there is something wrong when I get to the dr’s office. I went to Dr. A on Friday and he said that – yes, get ready for it – I had another infection but it was a fistula this time. I don’t even know what to say or do anymore. This is ludicrous. There is no proof that I have Crohn’s – even the dr’s say that – but yet I keep getting these infections. He put me on both Flagyl and Cipro for a week (in the middle of the week at present) and going back on Thursday at 2pm. Yes, it is a miracle I’m not in a mental institution yet. Plus you can’t drink on Flagyl so tmrw will be the first St. Patrick’s day I’m sober since university. Well, I need to do my laundry anyway…
16 June, 2009
Good and bad
Well it's been quite a weekend. Thursday's prep was okay, it definitely could have been worse. I took the two tablets that came w/ the prep at noon, for lunch I had jello and 8oz of broth around 14.00 and around 16.30 started to cramps all over. I figured I should go home then in case they got worse. I started the drink about 17.15 when I got home, just wanted to get it over with. Unfortunately the doctors office said I couldn't take any valium that night to help sleep so I knew it was going to be a rough time. I drank about 8 oz. every 10-15 minutes. I made sure it was cold and I used a straw and put it way back on my tongue so the taste wasn't as bad as it would have been. I also had lemon sucking candies between each glass and that definitely helped. A few times my throat just closed up and I had to spit it out - it had a mind of it's own. I didn't really have to go to the loo for over an hour, and I was pretty much done with it by then. On and off for a little while and then just gassy for the rest of the night. I slept for a little while but was up for good at 3am! My mother was sleeping over and she woke up around 4.30am and we were up for the rest of the am.
We left the house extra early at arrived at the doctors office at 7.50am for an 8.15am appointment. Unfortunately we were told after a few minutes that the doctor had been called into emergency surgery. It happens. I said I really didn't want to have to do the prep again and they assured me they'd get the procedure done that day, and to come back at noon. I was none too happy, between my neck / shoulder agony, starving and lack of sleep. We went all the way back home and miraculously I passed out for a couple of hours. Before we left to go back to the doctors I rang to make sure he was still going to be there, and was told yes, definitely come in. So off we went again. When we arrived at exactly noon, I had a funny feeling. By 12.23 I told my mother that in 7 minutes I was going to go postal. At this point I was beyond hungry and in a lot of pain w/ my neck. Then one of the staff asked me to come to the back with my mother. I knew that wasn't a good sign. He said the doctor was still in surgery and they were expecting him at 14.30, but there was no guarantee. I could 1)wait, 2)wait for another doctor but that wouldn't be till about 15.00 or later, or 3) reschedule. I said 3 wasn't an option as I barely have any days left off and unless they were going to pay me, it wouldn't work. Wasn't keen on a different doctor doing it, but the main thing was it was even a longer wait. I went with my gut and said I would stick it out for Dr. A. Thankfully they also let me take a clonazepam to relax and gave me an ice pack for my neck. For the next two hours my mother and I sat in the back waiting. Thankfully at 14.35 one of the staff came back and said to change. I let out with such a scream! Who would ever have thought I'd be that excited for a colonoscopy. When the doctor came in I gave him a kiss! He was v. sweet and said he wouldn't have not shown up for me. I really do like him, it's so hard to find good doctors and I am v. lucky I have a few v. v. good ones. They knocked me out and all was over within half an hour or so. Dr. A said I had a v. good looking colon and he had taken biopsies but really didn't think they'd say anything. So it's v. good all looks well but we still don't have an answer as to why I keep getting the peri rectal abscesses. Oh well, I've never been easy to diagnose so why start now?!?
After we left the office on the way to get some food, I received a call from Dr. Panagos' (physiatrist) office saying that they would have to reschedule my appointment for the 16th to the 22nd. I nearly lost it and started crying. I said there was no way I could make it another week and a half without some pain relief and please to sort something out. They asked if I was an existing patient and I said yes, and then they said they'd have the doctor ring me. It was already about 15.30 at this point and I didn't think I'd hear from him by the end of the day.
Amazingly he rang me on Saturday am. He even apologised for ringing on a Saturday. I told him he could call me whenever he wanted! He suggested taking Naproxen 500mg twice a day (not doing a damn thing) and taking two valium for sleep (doesn't help, the clonazepam seems to work better but still not a great sleep). I told him my MRI was scheduled for that afternoon and he said that was good and he should have the results by Tuesday. I did email him yesterday to tell him how painful the MRI was, and that the hospital said the images would be online by Tuesday (today) morning at the latest. The last time I had one 8 months ago for my neck, lying down didn't hurt anything like it does now. 20 minutes of lying flat on my back almost killed me. I could barely move my arm and neck after the test and the tech even had to help me up. I was such a wreck for the next day even! They did give me a disc then with the images but I have no idea what that means. Dr. P emailed me back last night and said he'd ring me today after he saw the images but sadly it's 15.50 and I've still not heard from him. I did leave a message with his nurse but haven't heard from her either. I am just hoping he has a solution for pain relief and we can schedule it soon so I have something to look forward to, because I am so wiped out from this pain I just keep wishing Henry VIII was still around so he could chop my head off!
And the best news of all has nothing (sadly) to do with my health but it's still amazing. I am an aunt again! Now I have a beautiful niece, she was born v. v. early on Saturday!
We left the house extra early at arrived at the doctors office at 7.50am for an 8.15am appointment. Unfortunately we were told after a few minutes that the doctor had been called into emergency surgery. It happens. I said I really didn't want to have to do the prep again and they assured me they'd get the procedure done that day, and to come back at noon. I was none too happy, between my neck / shoulder agony, starving and lack of sleep. We went all the way back home and miraculously I passed out for a couple of hours. Before we left to go back to the doctors I rang to make sure he was still going to be there, and was told yes, definitely come in. So off we went again. When we arrived at exactly noon, I had a funny feeling. By 12.23 I told my mother that in 7 minutes I was going to go postal. At this point I was beyond hungry and in a lot of pain w/ my neck. Then one of the staff asked me to come to the back with my mother. I knew that wasn't a good sign. He said the doctor was still in surgery and they were expecting him at 14.30, but there was no guarantee. I could 1)wait, 2)wait for another doctor but that wouldn't be till about 15.00 or later, or 3) reschedule. I said 3 wasn't an option as I barely have any days left off and unless they were going to pay me, it wouldn't work. Wasn't keen on a different doctor doing it, but the main thing was it was even a longer wait. I went with my gut and said I would stick it out for Dr. A. Thankfully they also let me take a clonazepam to relax and gave me an ice pack for my neck. For the next two hours my mother and I sat in the back waiting. Thankfully at 14.35 one of the staff came back and said to change. I let out with such a scream! Who would ever have thought I'd be that excited for a colonoscopy. When the doctor came in I gave him a kiss! He was v. sweet and said he wouldn't have not shown up for me. I really do like him, it's so hard to find good doctors and I am v. lucky I have a few v. v. good ones. They knocked me out and all was over within half an hour or so. Dr. A said I had a v. good looking colon and he had taken biopsies but really didn't think they'd say anything. So it's v. good all looks well but we still don't have an answer as to why I keep getting the peri rectal abscesses. Oh well, I've never been easy to diagnose so why start now?!?
After we left the office on the way to get some food, I received a call from Dr. Panagos' (physiatrist) office saying that they would have to reschedule my appointment for the 16th to the 22nd. I nearly lost it and started crying. I said there was no way I could make it another week and a half without some pain relief and please to sort something out. They asked if I was an existing patient and I said yes, and then they said they'd have the doctor ring me. It was already about 15.30 at this point and I didn't think I'd hear from him by the end of the day.
Amazingly he rang me on Saturday am. He even apologised for ringing on a Saturday. I told him he could call me whenever he wanted! He suggested taking Naproxen 500mg twice a day (not doing a damn thing) and taking two valium for sleep (doesn't help, the clonazepam seems to work better but still not a great sleep). I told him my MRI was scheduled for that afternoon and he said that was good and he should have the results by Tuesday. I did email him yesterday to tell him how painful the MRI was, and that the hospital said the images would be online by Tuesday (today) morning at the latest. The last time I had one 8 months ago for my neck, lying down didn't hurt anything like it does now. 20 minutes of lying flat on my back almost killed me. I could barely move my arm and neck after the test and the tech even had to help me up. I was such a wreck for the next day even! They did give me a disc then with the images but I have no idea what that means. Dr. P emailed me back last night and said he'd ring me today after he saw the images but sadly it's 15.50 and I've still not heard from him. I did leave a message with his nurse but haven't heard from her either. I am just hoping he has a solution for pain relief and we can schedule it soon so I have something to look forward to, because I am so wiped out from this pain I just keep wishing Henry VIII was still around so he could chop my head off!
And the best news of all has nothing (sadly) to do with my health but it's still amazing. I am an aunt again! Now I have a beautiful niece, she was born v. v. early on Saturday!
11 June, 2009
Going on week no. 3
with the neck and shoulder pain. It's not gotten better at all. Last week the physiatrist gave me a taper pack of prednisone. Did absolutely nothing. Nil. Nada. Zippo.
I spent the wkend at my parents trying to not move b/c when I move it hurt more. I tried the shoulder sling but couldn't really tell if it made much of a difference or not.
Monday I rang the physiatrist and made an appt for next Tues, the 16th. It was the first available. Tuesday I was still dying so I rang back and got his nurse - yay a live person. She was very understanding and helpful and said she would talk to him and get back to me. She did in a couple of hours and asked about the pain, if it was the same as back in Dec. I said no it's worse, so she said the dr wants me to have another MRI of my neck. I asked if we should do my shoulder but she said he's pretty sure the pain is originating from the spine, so that's what we'll do. It's scheduled that for this Saturday. In the meantime he gave me Valium to take so I can sleep. I took one last night at 21.00 and ended up waking up at 5 this morning. When I got up to take a shower I was loopy and walking into doors and dizzy and thought I'd fall down in the shower. How can people enjoy this feeling? If it at least got rid of the pain, then I might not mind as much. Anyway I hope the MRI results are quick and that there is something the dr can do on Tuesday to get rid of this major pain because I can't take much more of it, mentally, emotionally or physically. Once we (hopefully) sort the pain out then we have to figure out what to do next. It's one thing having stenosis, but it's another when you have HEDS thrown into the mix. None of the normal options seem available.
Today I have to do the prep for the colonoscopy tmrw. I am pretty nervous since just sitting kills my neck and back and I know I'll spend most of the evening in the loo. Oh well, at least I'll get it over with. I have to say though reading about this HalfLytely stuff does put one off, it sounds so gross. I had to do this once before but it was about 15 yrs ago.
I spent the wkend at my parents trying to not move b/c when I move it hurt more. I tried the shoulder sling but couldn't really tell if it made much of a difference or not.
Monday I rang the physiatrist and made an appt for next Tues, the 16th. It was the first available. Tuesday I was still dying so I rang back and got his nurse - yay a live person. She was very understanding and helpful and said she would talk to him and get back to me. She did in a couple of hours and asked about the pain, if it was the same as back in Dec. I said no it's worse, so she said the dr wants me to have another MRI of my neck. I asked if we should do my shoulder but she said he's pretty sure the pain is originating from the spine, so that's what we'll do. It's scheduled that for this Saturday. In the meantime he gave me Valium to take so I can sleep. I took one last night at 21.00 and ended up waking up at 5 this morning. When I got up to take a shower I was loopy and walking into doors and dizzy and thought I'd fall down in the shower. How can people enjoy this feeling? If it at least got rid of the pain, then I might not mind as much. Anyway I hope the MRI results are quick and that there is something the dr can do on Tuesday to get rid of this major pain because I can't take much more of it, mentally, emotionally or physically. Once we (hopefully) sort the pain out then we have to figure out what to do next. It's one thing having stenosis, but it's another when you have HEDS thrown into the mix. None of the normal options seem available.
Today I have to do the prep for the colonoscopy tmrw. I am pretty nervous since just sitting kills my neck and back and I know I'll spend most of the evening in the loo. Oh well, at least I'll get it over with. I have to say though reading about this HalfLytely stuff does put one off, it sounds so gross. I had to do this once before but it was about 15 yrs ago.
20 November, 2008
coincidence?
I was going through some old medical files that I had accumulated from when I was trying to figure out what was wrong with my hip. It was a very interesting list - I wrote down some things that might fit:
?Myofascial pain syndrome (neuromuscular disease; affects fascia; trigger points)
treated with PT, massage therapy, trigger point injection
?RA (inflammation of joint and tissue around joints; auto immune disease
?polyenthosopathy
-pinched nerve in cervical spine? feels like pinching/pressure in neck and shoots down right side of body
-Ehlers Danlos Syndrome -unstable joints; dislocating shoulder
What I find most interesting about this list is that I a)had this pain in my neck and arm longer than I can remember, it just wasn't as constant, and b) I think I am more qualified than most doctors. No doctor had mentioned anything about Myofascial pain until quite recently, and that was only because it was a physio in Holland. I knew I didn't have RA as I've never tested positive for it, but I guess I wanted to cover all bases. I was diagnosed w/ EDS after this, by a genetic doctor. And now I have been diagnosed with herniated, bulging discs and stenosis. I really should be a doctor.
Yes, I'm going to rant. And then rant some more. My major problem with the medical system in this country, well, one of them, is that all doctors are trained in parts. There is no doctor that I have found - if you know of one please tell me - that treats a body as a WHOLE. You have to go to a million different types of doctors that specialise in very specific things, and whilst that is good on one level, it is bad when they forget that that part of the body they focus on is actually CONNECTED to the rest of your body!
Where is this all going you ask? Well I had my appointment on Monday with the neurologist, Dr. Fatimi. Please don't go to her, she is dafter than a plank of wood. Perhaps she is just too young and clueless but she really doesn't have any idea what she's doing. My mother came with me to this appointment as I was to have the EMG test. Once we finally got into her office, she said - I thought you were going to have the EMG already? I couldn't believe it. I explained to her how I had had a whole long conversation with her assistants and we rescheduled the visit and the test to that day, from the 3rd. She said yes, I saw you were scheduled and you didn't come. I had to explain that I received a call from her office whilst I was away, and as I didn't return until midnight on the 2nd, I could not ring her office until the morning of the 3rd, and then tell the office that the appointment had been cancelled and rescheduled, which they said oh yeah, we have you for the 17th, for some reason it was still on the 3rd as well. This has to be one of the most disorganised offices ever. It drives me barmy. She didn't apologise or anything. Finally she arranged for the test to be done then, after she kept us waiting in the test room for ever. She didn't really explain what was going to happen, thankfully I had done my research, and did the electrode part first. They write on you for the measurements and then stick electrodes on you and zap you with electricity. This is not fun. I was trying to stay calm. It was extremely painful. Then it got worse, she did the needles. It was like medieval torture but with electricity. At one point she stuck a needle in my hand, in a v. sensitive post-surgery area of my hand that is extremely sensitive, and I lost it. She didn't warn me when she was going to do it or where, and just randomly kept stabbing and zapping. I hope whomever is reading this never has to have this test, but I won't lie. It was horrific.
After she was done, she said - wow you're so sensitive. Gee, a normal person would be in pain, but factor in the fact that I have fibromyalgia and my brain processes pain differently, then of course I was sensitive! That's what I mean about her - completely daft.
We then reviewed my MRI where she didn't even mention half of what the report said, until I brought it up. She then said she thought PT would work and gave me a prescription for that. I had brought along copies of some articles I had read about myofascial pain and dry needling, and gave them to her and explained that I believe (as my chiro does) that I have myofascial trigger points and that they need to be worked out before any PT can be done, because you can't strengthen a muscle that has a trigger point in it. I swear this went in one ear and out the other, then she seemed bothered that I was talking, wrote down the name a physiatrist, and said that I would need to talk to that person about treatment as she doesn't know anything else. What kind of doctor is that? Definitely not the kind that is concerned about a patient. I understand that with the way insurance is set up it is not to benefit the dr or the patient and they all have their numbers to do so they can make money, but if you don't want to treat patients then you shouldn't be a doctor. Period, case closed, regardless of the money. I have been to too many doctors to put up with this kind of crap. I am so fortunate that my primary, Dr. Rosen, takes the time out to talk to me, answer my calls, look into things when I need her to if it's something I can't do myself. And yes, I'm spoiled, but that is what a doctor should be like.
Ok, well, enough about that, sorry, I am just so frustrated.
After the lovely EMG I was in a lot of pain, stabbing, stinging pain. We had some wine and I thought I would be fine by the morning. But I was wrong. I woke up and could barely move my hand and everything was hyper-reactive in my body. The test inflamed everything and set me off down another spiral of bad pain all over my right side. I couldn't even go to work. Yesterday I was still pretty bad, and then I went to the chiro at lunch. He couldn't believe how tight my neck/shoulder area was and said there was a lot of Myofascial stuff going on. So I'm going to see him again tomorrow.
I did make an appointment with a physiatrist, Andre Panagos, at NY Pres who does dry needling, but it's not until the 29th. I heard back from Norman Marcus' office and will see about possibly going there. He doesn't take insurance and the first visit is $465, which I guess is better than $1200. I still can't get over that one!
So, onwards and upwards. My head is spinning from all of this and throbbing as well.
?Myofascial pain syndrome (neuromuscular disease; affects fascia; trigger points)
treated with PT, massage therapy, trigger point injection
?RA (inflammation of joint and tissue around joints; auto immune disease
?polyenthosopathy
-pinched nerve in cervical spine? feels like pinching/pressure in neck and shoots down right side of body
-Ehlers Danlos Syndrome -unstable joints; dislocating shoulder
What I find most interesting about this list is that I a)had this pain in my neck and arm longer than I can remember, it just wasn't as constant, and b) I think I am more qualified than most doctors. No doctor had mentioned anything about Myofascial pain until quite recently, and that was only because it was a physio in Holland. I knew I didn't have RA as I've never tested positive for it, but I guess I wanted to cover all bases. I was diagnosed w/ EDS after this, by a genetic doctor. And now I have been diagnosed with herniated, bulging discs and stenosis. I really should be a doctor.
Yes, I'm going to rant. And then rant some more. My major problem with the medical system in this country, well, one of them, is that all doctors are trained in parts. There is no doctor that I have found - if you know of one please tell me - that treats a body as a WHOLE. You have to go to a million different types of doctors that specialise in very specific things, and whilst that is good on one level, it is bad when they forget that that part of the body they focus on is actually CONNECTED to the rest of your body!
Where is this all going you ask? Well I had my appointment on Monday with the neurologist, Dr. Fatimi. Please don't go to her, she is dafter than a plank of wood. Perhaps she is just too young and clueless but she really doesn't have any idea what she's doing. My mother came with me to this appointment as I was to have the EMG test. Once we finally got into her office, she said - I thought you were going to have the EMG already? I couldn't believe it. I explained to her how I had had a whole long conversation with her assistants and we rescheduled the visit and the test to that day, from the 3rd. She said yes, I saw you were scheduled and you didn't come. I had to explain that I received a call from her office whilst I was away, and as I didn't return until midnight on the 2nd, I could not ring her office until the morning of the 3rd, and then tell the office that the appointment had been cancelled and rescheduled, which they said oh yeah, we have you for the 17th, for some reason it was still on the 3rd as well. This has to be one of the most disorganised offices ever. It drives me barmy. She didn't apologise or anything. Finally she arranged for the test to be done then, after she kept us waiting in the test room for ever. She didn't really explain what was going to happen, thankfully I had done my research, and did the electrode part first. They write on you for the measurements and then stick electrodes on you and zap you with electricity. This is not fun. I was trying to stay calm. It was extremely painful. Then it got worse, she did the needles. It was like medieval torture but with electricity. At one point she stuck a needle in my hand, in a v. sensitive post-surgery area of my hand that is extremely sensitive, and I lost it. She didn't warn me when she was going to do it or where, and just randomly kept stabbing and zapping. I hope whomever is reading this never has to have this test, but I won't lie. It was horrific.
After she was done, she said - wow you're so sensitive. Gee, a normal person would be in pain, but factor in the fact that I have fibromyalgia and my brain processes pain differently, then of course I was sensitive! That's what I mean about her - completely daft.
We then reviewed my MRI where she didn't even mention half of what the report said, until I brought it up. She then said she thought PT would work and gave me a prescription for that. I had brought along copies of some articles I had read about myofascial pain and dry needling, and gave them to her and explained that I believe (as my chiro does) that I have myofascial trigger points and that they need to be worked out before any PT can be done, because you can't strengthen a muscle that has a trigger point in it. I swear this went in one ear and out the other, then she seemed bothered that I was talking, wrote down the name a physiatrist, and said that I would need to talk to that person about treatment as she doesn't know anything else. What kind of doctor is that? Definitely not the kind that is concerned about a patient. I understand that with the way insurance is set up it is not to benefit the dr or the patient and they all have their numbers to do so they can make money, but if you don't want to treat patients then you shouldn't be a doctor. Period, case closed, regardless of the money. I have been to too many doctors to put up with this kind of crap. I am so fortunate that my primary, Dr. Rosen, takes the time out to talk to me, answer my calls, look into things when I need her to if it's something I can't do myself. And yes, I'm spoiled, but that is what a doctor should be like.
Ok, well, enough about that, sorry, I am just so frustrated.
After the lovely EMG I was in a lot of pain, stabbing, stinging pain. We had some wine and I thought I would be fine by the morning. But I was wrong. I woke up and could barely move my hand and everything was hyper-reactive in my body. The test inflamed everything and set me off down another spiral of bad pain all over my right side. I couldn't even go to work. Yesterday I was still pretty bad, and then I went to the chiro at lunch. He couldn't believe how tight my neck/shoulder area was and said there was a lot of Myofascial stuff going on. So I'm going to see him again tomorrow.
I did make an appointment with a physiatrist, Andre Panagos, at NY Pres who does dry needling, but it's not until the 29th. I heard back from Norman Marcus' office and will see about possibly going there. He doesn't take insurance and the first visit is $465, which I guess is better than $1200. I still can't get over that one!
So, onwards and upwards. My head is spinning from all of this and throbbing as well.
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