Having a rough time of it and came across this site. Seemed to have some good advice even though I know it good to refresh.
http://www.overcomingpain.com/10steps.html
28 March, 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…
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