3 Level Disc Replacement in Germany and Still in Pain

[jamie5136]

I emptied my bank account and retirement funds and borrowed money to finally go to the "best" surgeon in the world in Germany, Dr. Bertagnoli. I went alone and spent about one month there. I went to get 2, but determined I needed 3. The third one subsided and I needed cement injected into my back. In addition to the back pain and not being able to do anything, I also can't sit at all. I have tried every chair. I thought the replacements would resolve this, but it made it worse. My back flexibility is better, but I can't sit and my job requires that I sit.

I have had numerous MRI's, x-rays and injections into the facet and ganglion impar and no help. The next step is an SI joint injection from a specialist in MN. Dr. B's office has totally finally called me back after 9 months and only when I begged to talk to someone. Not sure if the ADR made this sitting pain worse. Sometimes I think I should have just had a flipping fusion here in the states at the Texas Back institute. I don't sleep w/out pills, am depressed and I can't sit, so I have to work from bed.

Thankfully I work for my Dad. Otherwise, I would have to go on disability and make one sixth of what I make. I am lost, scared, sad and cry all the time. I am 42, female, in good shape, no kids, educated, good job, great family and friends and a great boyfriend, but this constant sitting paid is ruining my life and I have grown to hate doctors; I don't trust any of them. I am considering just removing them and getting the fusion; not sure. HELP. I feel like I just want to die.

L3-S1 Disc replacement Germany, Dr. B. Pro-Disc L
2 Microdiscectomies by Dr. Kevin Gill
Countless blocks
Countless x-rays and MRI's

[Maria]

Jamie,
I am sorry to read about your increased pain or still terrible pain with sitting. This was a bigger or worst problem for me as well after my 2nd discectomy years ago as well as lower extremity bilat horrible burning pain that lasted far too long with out really good pain management mostly just because PM wasn't such a developed specialty back in the early '90's.

That being said I'm wondering if you're being treated by a PM with medications? It looks like you're getting some types of injections so I'm thinking you have seen or are seeing a PM.

Not so much so you can have something to help you sit because it just might be that your body isn't ready for that yet but rather to reduce the pain and therefore probably reduce the depression that's felt with a less than yet pain reducing surgery. I don't know if you're a candidate for a revision or if it's too early to be contemplating this as some people just have a longer turn around time with recovery over all and it makes for a really rough go of things tho ? not sure what your options are or what you'd be advised. Of course I'd imagine only expert surgeons that do revisions can give you advice on this.

I don't mean at all to minimize your pain or anything you are going thru but as you stated you're fortunate to be working for your father it appears rather than some heartless company with a bottom line only and have good friends/family/bf support so that's all good even if the pain is just rotten and not at all what you expected from this surgery.

Things can change~ there's that possibility re feeling better in the future so please just try not to sink completely into depression and if you are that deeply depressed (as in suicidal ideation) than please get immediate counseling or help with these feelings. If you're not taking any antidepressants you may find them very helpful for mood elevation.

Again, sorry to read what happened in your case and I'm wishing you the best. Please keep us posted.

[dshobbies]

Jamie,

What an unfortunate welcome to the forum. I am assuming your surgery was about 9 months ago because Dr. B finally called you after that amount of time? What did he say was the problem? Do your tests show anything out of place, facet problems or anything new?

First, I agree with Maria re a pain managment specialist. Then, I also want to tell you that you can still have a good recovery. My surgery was 4 years ago. I found these forums about 1 year before that. I noticed a pattern develop during all this time. Those who do well initially, are pretty much good to go after 1 year. Those who don't, but who will ultimately have a good outcome, take about 2 years. I know of another woman, a little older, who had a single level and nothing but problems afterwards. She became suicidal and her pain hadn't lessened at all. Her activity level did not improve. Sitting and standing, walking, etc. were impossible for her. She tried doctors and doctors and all thought she was crazy, there was no evidence that anything was causing her pain. Then, about 2 years out, she began to improve. Everything got better. Now she's about 4 years out and she's climbing mountains. She still has moments and as she told me, her back is OKish but she has her life back.

I too didn't do too well in the beginning, mostly due to nerve damage sustained during surgery. I was on heavy meds and crutches for 6 months. Sitting and standing took their sweet time in coming back and even today, I can't do all I could but am so happy I can do those things I love.

Jamie, we all hope for the best, do everything right and sometimes it's beyond our grasp or sometimes, we just have to give it more of a chance than we would have liked. Based on my observations which are completely unscientific, you might have to give it more time. True, you may need something further but then again, you may not. I'm just trying to give you some hope and tell you things might not be as bleek as they appear right now.

Please hang in there and post as often as necessary to keep your spirits up. Let us help you as only those who have walked in those same shoes can.

By the way, I finally convinced my friend to go on anti-depressants. She didn't want to, argued with me until she was blue, but I ultimately won and she reluctantly took them until the pain finally subsided and she was able to deal with life again. I beg you to do the same. That's what help is. Suicide on my watch is simply not an option! No, no, no!!!

I realize this isn't going to be the best holiday season for you but maybe 2010 will be better - and better- and better.

Dale

[jamie5136]

Originally Posted by Maria

Jamie,
I am sorry to read about your increased pain or still terrible pain with sitting. This was a bigger or worst problem for me as well after my 2nd discectomy years ago as well as lower extremity bilat horrible burning pain that lasted far too long with out really good pain management mostly just because PM wasn't such a developed specialty back in the early '90's.

That being said I'm wondering if you're being treated by a PM with medications? It looks like you're getting some types of injections so I'm thinking you have seen or are seeing a PM.

Not so much so you can have something to help you sit because it just might be that your body isn't ready for that yet but rather to reduce the pain and therefore probably reduce the depression that's felt with a less than yet pain reducing surgery. I don't know if you're a candidate for a revision or if it's too early to be contemplating this as some people just have a longer turn around time with recovery over all and it makes for a really rough go of things tho ? not sure what your options are or what you'd be advised. Of course I'd imagine only expert surgeons that do revisions can give you advice on this.

I don't mean at all to minimize your pain or anything you are going thru but as you stated you're fortunate to be working for your father it appears rather than some heartless company with a bottom line only and have good friends/family/bf support so that's all good even if the pain is just rotten and not at all what you expected from this surgery.

Things can change~ there's that possibility re feeling better in the future so please just try not to sink completely into depression and if you are that deeply depressed (as in suicidal ideation) than please get immediate counseling or help with these feelings. If you're not taking any antidepressants you may find them very helpful for mood elevation.

Again, sorry to read what happened in your case and I'm wishing you the best. Please keep us posted.

Thank you Maria for your words. Yes, I see PM doctors and get yet another injection on Wednesday along with a sitting down MRI, which I had to discover on my own. I mean the while sitting must be originating somewhere. It is not the tailbone, it has been determined, but it must be something and now that I have had this surgery and it is worse, I have to come to the conclusion that the surgery extended my body so much so that it is crushing or impinging something. I have hydrocodone, which can help, but I have such bad insomnia and it can keep me up at night and cause insomnia. I do not take anti-depressants because they also cause insomnia, badly. I have tried the tricyclic which make you more drowsy, but they cause massive weight gain and frequent urination. Once I took one pill and had to go to the bathroom like 30 times and of course this was throughout teh night. I took Seroquel for 5 or so years, but had to get off it due to some complications... so, I have tried. I hope I don't need a revision as I have gained back all of my flexibility and can do things I never could, but I can't sit. And, to be honest, my father is aging and our company may not be open much longer and then I am in trouble. I am degreed, but I can't sit. And, nobody is going to hire me to work from home, I don't think. I worry about these things. I wish I knew a doctor who could just tell me, "This is where your pain is coming from and this is what we are going to do."

[jamie5136]

Originally Posted by dshobbies

Jamie,

What an unfortunate welcome to the forum. I am assuming your surgery was about 9 months ago because Dr. B finally called you after that amount of time? What did he say was the problem? Do your tests show anything out of place, facet problems or anything new?

First, I agree with Maria re a pain managment specialist. Then, I also want to tell you that you can still have a good recovery. My surgery was 4 years ago. I found these forums about 1 year before that. I noticed a pattern develop during all this time. Those who do well initially, are pretty much good to go after 1 year. Those who don't, but who will ultimately have a good outcome, take about 2 years. I know of another woman, a little older, who had a single level and nothing but problems afterwards. She became suicidal and her pain hadn't lessened at all. Her activity level did not improve. Sitting and standing, walking, etc. were impossible for her. She tried doctors and doctors and all thought she was crazy, there was no evidence that anything was causing her pain. Then, about 2 years out, she began to improve. Everything got better. Now she's about 4 years out and she's climbing mountains. She still has moments and as she told me, her back is OKish but she has her life back.

I too didn't do too well in the beginning, mostly due to nerve damage sustained during surgery. I was on heavy meds and crutches for 6 months. Sitting and standing took their sweet time in coming back and even today, I can't do all I could but am so happy I can do those things I love.

Jamie, we all hope for the best, do everything right and sometimes it's beyond our grasp or sometimes, we just have to give it more of a chance than we would have liked. Based on my observations which are completely unscientific, you might have to give it more time. True, you may need something further but then again, you may not. I'm just trying to give you some hope and tell you things might not be as bleek as they appear right now.

Please hang in there and post as often as necessary to keep your spirits up. Let us help you as only those who have walked in those same shoes can.

By the way, I finally convinced my friend to go on anti-depressants. She didn't want to, argued with me until she was blue, but I ultimately won and she reluctantly took them until the pain finally subsided and she was able to deal with life again. I beg you to do the same. That's what help is. Suicide on my watch is simply not an option! No, no, no!!!

I realize this isn't going to be the best holiday season for you but maybe 2010 will be better - and better- and better.

Dale

Dr. B suggested some injections and another special CT scan, and the sitting MRI. He said we must find the origin of the pain, which was obvious to me, but i am glad he called me. He said the clicking in one of my discs is normal as long as nobody else can hear it...hmmm, seems curious to me. I can hear it and that can't be normal, but remember, I had this sitting pain before the ADR surgery, so the problem existed before, but this surgery made it worse. The tests I have had to far show nothing. The disc that was subsiding is stable and has been, so that is not the issue. I am sure, like the woman you were talking about, the doctors will say, "we see nothing," over and over and over, but when I go to sit and I feel burning stabbing pain in my lower back and coccyx, SOMTHING is wrong. Because it is a nerve issue, tests don't show issues in those areas, only the device and soft tissue and bone.
By the way, anti-depressants cause massive insomnia and when coupled with pain management, I would never sleep. This is why I avoid both. A double-edged sword of sorts.

[Maria]

Jamie,
I have to tell you that I wasn't able to work as an RN after injuring my back in '82 working in Neurosurgery so I went back to Grad school and got my MSN/NP but I couldn't sit in chairs or at desks so I brought a bean bag chair with me and semi reclined for my classes. Did people think I was weird? At first but who gives a rats arse was my stance. I had a goal and I was going to get there.. In my statistics class I had to lie across the long table in class so I could see the board. My instructor was most kind about this after intially telling me I could not attend class like that. Or to any other instructor that took that position I always said ~ Ok I'll go to the Disabled Students Resources Dept and get what I need to be able to "lie down" in class.

Well, I graduate and now have to find a job where I don't have to sit and I do as I was seeing patients in ambulatory care tho I became the clinic coordinator/manager and I then had to start sitting at meetings and so forth and had an office that I had to "sit" in .. oh yeah~ everyone quickly learned I didn't do sitting well and would avoid it at all costs because my comfortable limit was about 2 minutes. I stood at meetings, stood in my office and so forth.

My last position that lasted 5 years and would have gone on if I could have remained at work was as a Telephonic Triage/Advice Nurse for a Managed Care co. and they hired me even tho I said I had to stand at my station as I couldn't sit so my station was adapted for standing altho there was a chair there as well in case I had to sit. I had one arm removed so that I could usually place my knee on it and sort of stand and support myself that way and had a cushioned mat like hairdressers use at my feet for greater support. I had a step stool under the desk and could shift my weight regularly. When I took my breaks I went to my van and laid down to rest my back.

It can be done. I avoided sitting for years and years and now within the last few years I can sit again socially as in going out to eat and so forth. I believe it's from L5S1 autofusing.

Still when I travel coast to coast I buy 3 plane seats to fly so I can lie down or else I couldn't manage the pain from that length of sitting even with getting up several times. I used to stand most of the 5 hour flight but now people are not allowed to be out of their seats most of the flights so that's not really possible.

I don't know where your pain is originating from tho I do just want to give you hope ~ believe me I have suffered greatly with pain and I have gone thru much tho I'm real glad I stuck out the bad bad dark times and kept hoping life would get better pain wise. It did. Sure I use some pain medication and Neurontin tho I'm just glad to have this much relief.

I stopped working about 8 years ago and maybe if I had pursued further spine surgery recommended I would still be working altho I hope to one day return anyway somehow.

Wishing you the best and please hang in there. Life can really present some intense challenges tho when the tide changes for the better it's really good to still be here~

[jamie5136]

Originally Posted by Maria

Jamie,
I have to tell you that I wasn't able to work as an RN after injuring my back in '82 working in Neurosurgery so I went back to Grad school and got my MSN/NP but I couldn't sit in chairs or at desks so I brought a bean bag chair with me and semi reclined for my classes. Did people think I was weird? At first but who gives a rats arse was my stance. I had a goal and I was going to get there.. In my statistics class I had to lie across the long table in class so I could see the board. My instructor was most kind about this after intially telling me I could not attend class like that. Or to any other instructor that took that position I always said ~ Ok I'll go to the Disabled Students Resources Dept and get what I need to be able to "lie down" in class.

Well, I graduate and now have to find a job where I don't have to sit and I do as I was seeing patients in ambulatory care tho I became the clinic coordinator/manager and I then had to start sitting at meetings and so forth and had an office that I had to "sit" in .. oh yeah~ everyone quickly learned I didn't do sitting well and would avoid it at all costs because my comfortable limit was about 2 minutes. I stood at meetings, stood in my office and so forth.

My last position that lasted 5 years and would have gone on if I could have remained at work was as a Telephonic Triage/Advice Nurse for a Managed Care co. and they hired me even tho I said I had to stand at my station as I couldn't sit so my station was adapted for standing altho there was a chair there as well in case I had to sit. I had one arm removed so that I could usually place my knee on it and sort of stand and support myself that way and had a cushioned mat like hairdressers use at my feet for greater support. I had a step stool under the desk and could shift my weight regularly. When I took my breaks I went to my van and laid down to rest my back.

It can be done. I avoided sitting for years and years and now within the last few years I can sit again socially as in going out to eat and so forth. I believe it's from L5S1 autofusing.

Still when I travel coast to coast I buy 3 plane seats to fly so I can lie down or else I couldn't manage the pain from that length of sitting even with getting up several times. I used to stand most of the 5 hour flight but now people are not allowed to be out of their seats most of the flights so that's not really possible.

I don't know where your pain is originating from tho I do just want to give you hope ~ believe me I have suffered greatly with pain and I have gone thru much tho I'm real glad I stuck out the bad bad dark times and kept hoping life would get better pain wise. It did. Sure I use some pain medication and Neurontin tho I'm just glad to have this much relief.

I stopped working about 8 years ago and maybe if I had pursued further spine surgery recommended I would still be working altho I hope to one day return anyway somehow.

Wishing you the best and please hang in there. Life can really present some intense challenges tho when the tide changes for the better it's really good to still be here~

So, you never had an ADR surgery? Did doctors ever figure out the source of your pain? Your story is encouraging and inspirational. I sadly can't take any time off and have to work full-time in bed. When I try to sit, I have to adjust from side to side sitting on my leg and I even got a sitting forward chair from Hag, but it still hurt. The Stance chair is sold out and the company is not longer making them, so if you know of a chair where I can stand, I would appreciate it. Thanks Maria!

[ans]

I am so sorry to hear of your plight. I wonder - and experts can chime in, if a myelogram would help identify your pain sources. Also, my pain management doctor acted as a physiatrist and diagnosed S-I joint pain that was just horrible and fortunately I responded well to an injection. Also, if you're truly feeling suicidal I hope that you see a psychiatrist and get a good Rx; personally I like Cymbalta which helps w/nerve pain too but there's some good stuff. In short, this utterly sucks but w/technology, it ain't over which is so easy for an outsider to say. My very best - Allan

P.S. I know that this ate your money but I can't help but wonder what Dr. Regan and Dr. Filler in Beverly Hills would say about you/your case.

[jamie5136]

Originally Posted by ans

I am so sorry to hear of your plight. I wonder - and experts can chime in, if a myelogram would help identify your pain sources. Also, my pain management doctor acted as a physiatrist and diagnosed S-I joint pain that was just horrible and fortunately I responded well to an injection. Also, if you're truly feeling suicidal I hope that you see a psychiatrist and get a good Rx; personally I like Cymbalta which helps w/nerve pain too but there's some good stuff. In short, this utterly sucks but w/technology, it ain't over which is so easy for an outsider to say. My very best - Allan

P.S. I know that this ate your money but I can't help but wonder what Dr. Regan and Dr. Filler in Beverly Hills would say about you/your case.

I get an SI joint injection on both sides on Wednesday along with my 3rd ganglion impar injection, so that should be a good diagnostic. I have been to only 2 pain med doctors and they both just suggest injections. If these injections do not help, then I don't know what to do. I have heard of a Mylogram, but not sure what it is. Nobody has suggested this. I know Cymbalta is new, but the thing with anti-depressants is, they cause me insomnia and give me too much energy and then I can't sleep at night. I used to take Lexapro which was good, but zero sleep, even if I took it in the morning.

I have never heard of Dr. Filler, but I have Dr. Regan. I hear they do revisions for patients who have had failed ADR. I am hoping my ADR is not a lost situation. I just went for a nice, long, hike, I just can't sit; very weird. I wish it was just the opposite. When I tell people I can't sit, they look at me oddly as it is rare. I am envious of people who can, which I know is strange.

I wonder if I should go see Dr. Regan. I am sure he would be interested in my case as I had a 3 level and one subsided and I still have pain. I would hate to get them out and get a fusion. That is not a gaurantee the pain would go away. I guess w/out knowing where the pain is coming from, I have no plan. There is a doctor in MN who is an SI joint specialist and does SI joint fusions, so if that is the issue, I will see him. There is also a coccyx specialist (although x-rays show it is fine) in NJ should that be the issue. I have a "sit-down" MRI on Tuesday. Maybe that might find something. I think since it is a nerve issue, neither x-ray or MRI will show this, right? Also, how does Cymbalta help with nerve pain? I owe my psychiatrist a visit and will ask him. Now I take Lunesta and Halcion to sleep. I used to take Seroquel, but I had to get off of it. Thanks for your feedback.

[Maria]

There are some chairs at Relax the Back store you might want to try out altho they were mostly over $1000 so then I heard about a lounge chair like version at Home Depot that was on sale for $69 and brought it home and it would have been great for semi reclining and working on my laptop but it was just a bit too big for the space I wanted to put it in so I had to bring it back. Perhaps if you google Relax the Back store you can pull up the link and see the chairs they have where you lie back and your legs are elevated at the knee so it keeps your back supported in a flat position and raises legs at knees taking pressure of the low back.

I think if I were going to work for someone I would have to have a chair like that for computer work (if I wanted to recline) and then a standing station if I were going to stand part of the time and I'd try switching positions as long as standing didn't create a problem.

I now also have a cervical disc bulge and have to pamper my neck as well when working at the computer so that's sort of a drag tho I just try to work with things making my own adaptive type of situations after seeing some of the things out there for people with disabilities that are working that I cannot afford.

Your situation does sound somewhat promising since you're able to hike well and hopefully you will eventually be able to sit again as well. I know I said the same thing as you with regard to wishing it were the other way around as I so missed being able to sit in libraries, on planes, in movies, at the theater/plays, and on and on however I'm thankful for how good I do feel finally and for what I can do comfortably these days.

And no, I did not have ADR. I was slated for a 3 level global fusion back in 2000 and didn't want to have that and pursued trying to get ADR surgery thru WC and in 2003 a 2 level ADR surgery was approved in a trial at UCSF but they stopped the trial before my surgery date and then it wasn't until 2006 that surgery was authorized for me again however by then it was an ADR at L4 and fusion at L5S1.

I am afraid of fusion. Probably unreasonably so however I've waited so many years now since my original injury it appears L5S1 has autofused finally per my OSS and my symptoms are not as severe as they used to be so I'm quite pleased. Also I think the autofusion accounts for why I can now sit at least socially or for like an hour or so without looking like I have ants in my pants.

[jamie5136]

Originally Posted by Maria

There are some chairs at Relax the Back store you might want to try out altho they were mostly over $1000 so then I heard about a lounge chair like version at Home Depot that was on sale for $69 and brought it home and it would have been great for semi reclining and working on my laptop but it was just a bit too big for the space I wanted to put it in so I had to bring it back. Perhaps if you google Relax the Back store you can pull up the link and see the chairs they have where you lie back and your legs are elevated at the knee so it keeps your back supported in a flat position and raises legs at knees taking pressure of the low back.

I think if I were going to work for someone I would have to have a chair like that for computer work (if I wanted to recline) and then a standing station if I were going to stand part of the time and I'd try switching positions as long as standing didn't create a problem.

I now also have a cervical disc bulge and have to pamper my neck as well when working at the computer so that's sort of a drag tho I just try to work with things making my own adaptive type of situations after seeing some of the things out there for people with disabilities that are working that I cannot afford.

Your situation does sound somewhat promising since you're able to hike well and hopefully you will eventually be able to sit again as well. I know I said the same thing as you with regard to wishing it were the other way around as I so missed being able to sit in libraries, on planes, in movies, at the theater/plays, and on and on however I'm thankful for how good I do feel finally and for what I can do comfortably these days.

And no, I did not have ADR. I was slated for a 3 level global fusion back in 2000 and didn't want to have that and pursued trying to get ADR surgery thru WC and in 2003 a 2 level ADR surgery was approved in a trial at UCSF but they stopped the trial before my surgery date and then it wasn't until 2006 that surgery was authorized for me again however by then it was an ADR at L4 and fusion at L5S1.

I am afraid of fusion. Probably unreasonably so however I've waited so many years now since my original injury it appears L5S1 has autofused finally per my OSS and my symptoms are not as severe as they used to be so I'm quite pleased. Also I think the autofusion accounts for why I can now sit at least socially or for like an hour or so without looking like I have ants in my pants.

Well, I can hike, but for some reason, sitting feels like someone is taking a hot poker and driving it up my tushie or lower spine. I hate to be so graphic, but that is how it feels. I can't find a standing chair, and Relax the Back does not have one. The Stance chair company is no longer making their chair, which would have been perfect. I have also been looking at a Zero Gravity chair, but they are so expensive. And, oddly enough, out of desperation, I thought about getting an inversion table that is seated and using that as a chair. It is just like a regular inversion table but has a chair on it and it has 6 different positions, but it is not designed to be an office chair. I get so frustrated! I am so sorry to hear about your neck. May I ask you a private question? Are you on disability or are you supported by your husband? I was thinking about going on SSI, but I hear it is hard to get for sitting pain and then if you get it, you get paid almost nothing; not enough to survive. You don't have to answer, just wondering.

[Maria]

thanks for bringing that up.. it's what I meant re the Home Depot lounge type of chair that is zero gravity like and there are more like this and they're under $100. RE a standing chair.. no.. I just stood up at my desk and had a chair next to my desk that was on wheels and had an arm removed so I would often just shift positions and sort of support one knee on it while sort of standing and actually leaning forward towards my desk to open up my lumbar space or stretch. At least this is what it felt like I was doing.

When I applied for SSD I was only working part time. Mistake. Better to apply when you're working full time as you want as many work hours on there for the qualifying quarters (years?) that are used to compile this.

I was awarded SSD upon first application (I had a 20 plus year documented history of back probs thanks to WC's records) and then about my 6th month into SSD the place where I had left employment advised me to apply for LTD or long term disability and I qualified for that as well.

I lived with my husband but he wasn't supporting me at any time as I always had my income which was the stable income of the two prior to my applications to disability. I have lived alone for the last 5 years and support myself however my husband is kind enough to keep me on his medical insurance to date ( I do have Medicare tho his
BCBS is extremely helpful re dental and prescriptions).

[jamie5136]

Originally Posted by Maria

thanks for bringing that up.. it's what I meant re the Home Depot lounge type of chair that is zero gravity like and there are more like this and they're under $100. RE a standing chair.. no.. I just stood up at my desk and had a chair next to my desk that was on wheels and had an arm removed so I would often just shift positions and sort of support one knee on it while sort of standing and actually leaning forward towards my desk to open up my lumbar space or stretch. At least this is what it felt like I was doing.

When I applied for SSD I was only working part time. Mistake. Better to apply when you're working full time as you want as many work hours on there for the qualifying quarters (years?) that are used to compile this.

I was awarded SSD upon first application (I had a 20 plus year documented history of back probs thanks to WC's records) and then about my 6th month into SSD the place where I had left employment advised me to apply for LTD or long term disability and I qualified for that as well.

I lived with my husband but he wasn't supporting me at any time as I always had my income which was the stable income of the two prior to my applications to disability. I have lived alone for the last 5 years and support myself however my husband is kind enough to keep me on his medical insurance to date ( I do have Medicare tho his
BCBS is extremely helpful re dental and prescriptions).

Okay, here is that standing chair. If I could find one of these, I would be set: Health Postures Stance Chair

I see the Zero Gravity chairs and there are some for under 100.00, but some for like 1200.00 or more which are obviously padded and have more options.
PC-085 POWER BONDED LEATHER ZERO GRAVITY PERFECT CHAIR - eBay (item 370183400110 end time Dec-29-09 17:27:26 PST)

Do you work at all, or do you live off of SSI? I hear they give you nothing. I envision myself living in an efficiency with a futon eating cat food.

[Maria]

Jamie,
I like the standing chair. Wish they had those on airplanes.. and if I could tilt myself upwards every once in awhile and lie flat for a bit that'd be perfect.

I've tried the Perfect Chair at Relax The Back store and while it was really nice the price was prohibitive for me. The Home Depot Anti Gravity chair was more what I could afford and one could easily add something over the top of it (like a covering) and adapt it well enough~ or at least I think I could have.

There was a guy on one of the spine forums and I don't remember what his exact work was but it was something for which he had to sit or be at a computer 8 hours/day. I remember he posted the type of chairs he was considering trying as he couldn't sit either but he could work, his mind was clear and he was fully functional to work other than not being able to sit because of severe pain from this one position as well. Perhaps someone else here will remember this person as well ~ anyway long story short he did get the station he wanted for work and he continued working. I think it may have even been with a new employer if I recall correctly.

Ok have go as I'm getting sleepy and not sure what I'll be writing next~ g' nite!

[fuzzy]

I also think the fact that you can stand and walk is good news!

I also like the standing chair. It is not available anymore? Thats a pity!

Before my surgery I could not stand and could not sit. After my surgery suddenly I could stand real good but still could not sit. To this very day in those countless office visits meetings I often refuse the chair and just stand which freaks so many people out, they are just not used to someone standing in a meeting! Before the surgery I had to lie on the floor and that of cause was even weirder. But now 2 years later I can sit much butter but I still take opportunities to not sit but stand instead.

I have the "antigrav" chair from Relax The Back. The electric version as I could never pull that lever and push the chair back. I got it before my first (lumbar) surgery and it turned out to not help me at all as it still is a sitting position even when driving it into the flat (antigrav) position I would still hurt and have all kind of problems in my feet. The angle of my legs to my body and still some pressure on something. I could only lie totally flat. So it sat in the corner. Now post lumbar surgery I have improved and I actually like this chair! I would highly suggest to try this chair (the electric one) and sit in it. Do you hurt? Then use the motor to move the chair into the elevated position. Do you still hurt? Is it the postion of your legs relative to your body or is it simply gravity pushing down when sitting that makes you hurt. If it is that I suggest you buy all the special chairs you can find and give it more time before having more procedures! It took me over a year before I started feeling comfortable to sit any length of time.

I also have the motorized office desk from them. Its very good. Years ago I found (at a garage sale) a kneeling chair which is somewhat close to a standing chair which I had rebuilt and then my wife made new pads for it and I still have that is the office. I use this occasionally. This one you sit on your knees and rest your but against a pad. I spend time on a gym ball to temporarely rest on putting the legs to the side like riding a horse.

Between the kneeling chair and the motorized desk I did much better in my own space then visiting other places where there are no options other then regular chairs.

Most importantly I have steadily improved over the course of 2 years. Give it more time. Try to find these chairs as you have a good chance of healing. Don't consider a revision unless you do find a real good reason in your search for the true origin of your pain.

I wish you the best!

[wilsonrob]

Where exactly is your pain? Could it be piriformis syndrome?

[jamie5136]

That is the 64,000 question. I just did your test and felt the glutes stretch, but it actually felt good to stretch like that, so my guess is that it is not the piriformis muscle. I oddly enough found an illustration of a nude woman from behind, brought that into a design program and circled the pain and where it was radiating, but I have not heard back from Dr. B. So, the only way I can describe it is as follows: Image where the tushie crack starts and go up about 3-4 inches or so. That is the main source of pain. That radiates into my buttocks, but rarely, if ever, in my legs. So, when I sit or put any pressure on that part or just sitting, it burns like fire and aches. I end of having to adjust myself by putting one leg under the other and sitting on my legs throughout the day. Even laying in bed with my knees up hurts because this is putting direct pressure on that spot. Dr. Gill and one MRI nurse said, "This is your lower back." So, I assume this means L5-S1. I had this pain before, but this surgery made it much worse, so I have to conclude that I had a pre-existing condition and that the discs did not help the sitting pain; it only aggravated it and it is not getting better. Sometimes it "feels" as though it is my tailbone, or around that area, but x-rays show it is not broken, so Dr. Gill in Dallas said it was not my tailbone. So, I am lost. My thought is that because I grew about 1/2 inch or so that my spine elongated and is pinched or impinging or pressing some type of nerve or joint. Does that make sense. My father seems to think that it is inflammation, like osteo arthritis and that the elongating of my spine could have caused a stress fracture, making it worse; I don't know. Obviously the surgery made it worse. The opinons or guesses I get are plentiful. I am going to get an EMG test here soon. Maybe that will help. Oh, I found that Stance chair, but it is 500.00 just for shipping! I wish I could catch a break sometimes.

Originally Posted by wilsonrob

Where exactly is your pain? Could it be piriformis syndrome?

[dshobbies]

I agree with Rob, that piriformis syndrome should also be investigated. My thinking, that you experience this same pain while lying with your knees up which puts very little pressure on your tailbone, says alot. It sounds like something is being stretched that doesn't want to stretch.

[wilsonrob]

1 of 3 things?

piriformis
SI joint
L5 or S1 nerve

Pain management should be able to diagnosis with injections or RF treatment.

If no leg pain it might be SI joint?

[jamie5136]

Originally Posted by wilsonrob

1 of 3 things?

piriformis
SI joint
L5 or S1 nerve

Pain management should be able to diagnosis with injections or RF treatment.

If no leg pain it might be SI joint?

No pain managment doctor has mentioned anything other than it "could" be the Si joint. It feels like the L5S1 nerve, but I don't know what that is. I get an injection tomorrow in the S1 joint and the doctor does do RF if needed on the ganglion impar, but can RF be done on the S1 joint?

[wilsonrob]

yes. When they do the RF they should do the SI joint. Make sure they do if needed.

[jamie5136]

Originally Posted by wilsonrob

yes. When they do the RF they should do the SI joint. Make sure they do if needed.

Well, I will see if the SI joint injection even helps tomorrow. If it does not, he might not do the RF. I don't know.

[Maria]

Jamie,
Hope you get some relief w/the injection and/or the pm will continue to try and figure out what the pain generator(s) is/are.

I was thinking about a work station I saw somewhere in a magazine a while back. It was a treadmill with a computerized workstation and I think that could easy enough to set up for yourself if you thought that might be helpful.

I had bought a great treadmill back when I was having the worse prob and wanted to walk inside and paid around $600 for it and it would have been easy to set a laptop up at it (don't know what it would take to connect it to a network).

My husband works setting up networks (LAN?/other?) I'm not really that into it just know that's his biz on the side or part of it at least for small companies and various private clientele. You and others here may know much more about this than me. I don't really have the aptitude for this type of thing.

[e-gal]

Everyone's recovery path is different, often depending on your condition pre-surgery. I had 3level lumber with Dr. B in Straubing 10/06. I felt good after the surgery but really my recovery continued for about 2 years. I tried the traditional anti-depressants for pain but they made me too sleepy. Finally, a friend suggested Wellbutrin, which isn't one they normally use. However, I felt better immediately. The pain was still there but it went from the front of my consiousness to the back, a little hard to describe. It also gave much more energy, which let me get more active, which helped my recovery. I didn't realize that I actually was depressed until after I started this drug. My outlook on life has improved dramatically and I have come to accept that this is my life. I made a decision not to return to work because I have limitation in how long I can sit or stand, but this is still improving. I still need PT but only about 1 x a week. I still think that my life will continue to get better, so don't give up but work at your recovery.

[jamie5136]

Well, I just found out that my L5-SI subsided superiorly and this was not caught, so I have a situation in that part of my back that, in a sense, slipped through the cracks. Someone, not a doctor, found this for me. This could be the cause of the pain as the pain is getting worse and nothing seems to help. I can't sit or lay down on my back. Anti-depressents make me so anxious and have too much energy and then I get insomnia, so they don't make me sleepy, but very awake. I can ask a doctor about medications to change my outlook, as of now it is not so good. I will probably need an extraction of that lower disc and then a fusion, so more surgery and more recovery. I don't know if this is the source of my pain. I just don't seem to get any definite answers, which is the most frustrating part. Thank you for your feedback. I appreciate it.

Originally Posted by e-gal

Everyone's recovery path is different, often depending on your condition pre-surgery. I had 3level lumber with Dr. B in Straubing 10/06. I felt good after the surgery but really my recovery continued for about 2 years. I tried the traditional anti-depressants for pain but they made me too sleepy. Finally, a friend suggested Wellbutrin, which isn't one they normally use. However, I felt better immediately. The pain was still there but it went from the front of my consiousness to the back, a little hard to describe. It also gave much more energy, which let me get more active, which helped my recovery. I didn't realize that I actually was depressed until after I started this drug. My outlook on life has improved dramatically and I have come to accept that this is my life. I made a decision not to return to work because I have limitation in how long I can sit or stand, but this is still improving. I still need PT but only about 1 x a week. I still think that my life will continue to get better, so don't give up but work at your recovery.

[Maria]

Jamie,
Did you have BMD (bone mineral density testing) prior to your ADR surgery?

[ans]

J: Are you on pain meds? I can't tolerate excruciating pain and stay remotely sane. I found that Avinza, one dose/24 hours has been a blessing for me. I hope that you get everything fixed right and maybe Dr. Regan might be they guy to see, but alas insurance and costs.

My best, Allan

[jamie5136]

Originally Posted by Maria

Jamie,
Did you have BMD (bone mineral density testing) prior to your ADR surgery?

Yes, I did. When I was there, L3-L4 sunk, but they injected that cement stuff at that level and at L4-L5, just in case, but they did not at L5-S1 and the disc sunk upwards. The doctor's assistant said everything looked "perfect." Well, nothing has been perfect since April and I have been chasing this issue down ever since and this whole time the real doctor never saw these x-rays, so it is back to a fusion for me. I am angry, sad and confused.

[jamie5136]

Originally Posted by ans

J: Are you on pain meds? I can't tolerate excruciating pain and stay remotely sane. I found that Avinza, one dose/24 hours has been a blessing for me. I hope that you get everything fixed right and maybe Dr. Regan might be they guy to see, but alas insurance and costs.

My best, Allan

I take Tramadol every day, but just one and if I need to be in a good mood for a couple hours and semi-pain free, I take one hydrocodone.... And yes, my patient advocates (who found the problem) are going to put me in touch with Regan. I have insurance, but he is not on my plan, I am sure, so more out of pocket money. Sadly, this could have been avoided if they looked at my post op x-rays more carefully. This lower disc is completely subsided superiorly. This is obviously a part of the issue. Now a fusion is on the horizon. I know, more out of pocket money. I live almost walking distance from the Texas Back Institute, but I don't think they like dealing with revisions... many don't know how to take the ADR out. Seems fairly simple to me. I would rather stay here in Dallas than travel even more, but I want the best. I would hate to have to go back to Germany. I was there for one month. I think the thing that makes me so upset is that I did my homework for 2 years on this procedure and this doctor and now, in hind site, I should have just done the fusion. This ADR has destroyed my life. Tell me more about this medication. Is it additive? I work at a pharmacy and can find out however.

[Maria]

It's Morphine Sulfate extended dose. I prefer the term physiologically dependent.

Getting relief on one Tramadol is pretty good and perhaps you should try a medicine such as ans has mentioned. I suffered for YEARS until starting low dose Methadone which I'm sure you know what that is and yes one can become physiologically dependent on it and I have. I take 12mg/once daily and have been on the same dose for 8 years. My level of relief is good and I can function pretty well albeit as I've mentioned I'm not working.

I'm sorry to hear about the situation you're in and hope that it can be resolved in a manner that does allow for maximal function for you and less to no pain.

I know first hand the frustration of high expectations for a surgery and failure for whatever reason however I didn't pay for my surgery, WC did and yet I was just as angry and dejected and felt my life ruined as well.

One of the reasons I didn't want to do ADR here in the states was because no one was doing vertebroplasty (sp) with and I had osteopenia so I had wanted to wait and go abroad but in the time of waiting my pain levels got much better and then I thought "better the devil I know than the devil I don't" and after living thru such awful hell with that post 2nd surgery type of pain I chose PM for now and until my spine just craps the heck out totally I think. Oh yes, now I have osteoporosis in my lumbar spine and facets at L4 and L5S1 are degenerated probably too much for ADR (so I waited too long it looks like for that surgery thus making fusion which I originally did not want my only option now for more surgery).

Don't beat yourself up for your decision. You did your homework, you made your decision.

As to the surgeon I don't know what to say. My personal opinion is every surgeon has a reason why he or she does their procedure his or her way and maybe he didn't look at the films before hand tho our own bodies react in ways no one can predict when it comes to spine surgery.

Someone might be at the top of his or her game and I still think there's no quarantees with spine surgery. If there was I would have had a 3rd one by now.

[ans]

J: A doctor who had a one level ADR and who read a mere 5000 articles before his surgery turned me on to this pain management site. I really like it and hope you find it useful on perusing around:

Pain Medicine & Palliative Care: Pain Medicine

I am amazed that you can sleep with such few pain meds.

When I was prescribed extended release morphine sulphate, I freaked and said "Morphine!?". The PM said "what's your problem"? Then I educated myself and wish I saw a PM specialist and knew this stuff years ago. And I took a course on "Substance Abuse" for my degree and learned nothing of this.

My very best as you're in a rough bind. - ans

[Maria]

Good link. So I am thinking normally... hmmmm!

[Eddie G]

I have a note from my doctor that I bring with me to public events where I need to sit with my exercise ball. It's surprising how many event staff security guards who just dont get it. I walk in with a cane and a ball and they always seem to have to call a supervisor.

"Duhh ...dis is different...duhh...dis is not the same ding... duh...U have to sit in a chair like everyone else duhh...dis is not what Im used to duhh"

"But sir, I have had multiple spine surgeries. I cant sit in your uncomfortable plastic chairs. Here is a note from my doctor"

"Duhh, I gotta show dis note to my boss duhh...We dont see too many of u invalids. If U throw that ball we are gonna throw u outta here."

"Yeah sure, I went through all this trouble with a cane, a ball, a doctors note, and a wheelchair accessible seat, just so I can throw my $25 exercise ball away into the crowd and get kicked out."

Man I have even been to a broadway show where it took them 20 minutes to figure out that I actually bought a wheelchair seat for a reason. They were trying to squeeze me into the middle of a row and expected me to sit on a ball, on top of a chair! The wheelchair seat I bought was empty & available and they just couldnt understand that I wanted to sit where there was no seat to sit on. They finally got me to my seat but it was like pulling teeth. I had to tell my life story to each different usher.
I NEED A WHEELCHAIR SEAT BECAUSE I BRING MY OWN SITTING DEVICE!!! WHY IS THIS SO HARD TO UNDERSTAND? Gosh!

I think those massage chairs that you see at the mall where people kind of kneel, look real comfortable. I may get one. Until then, remember that diners have counters and alot of restaurants have bars. Just stand at the bar & eat dinner. I've been doing it for 6 years.

[mmglobal]

Hey Eddie... the visual of sitting atop a swiss ball atop a theater seat is pretty funny!

Here's to wishing us all a better 2010.

Mark

[jamie5136]

May I ask why you have sitting pain? I am always so fascinated how the low spine makes it so only a small percentage of people affected with spinal issues have this sitting pain. Thanks!

Originally Posted by Eddie G

I have a note from my doctor that I bring with me to public events where I need to sit with my exercise ball. It's surprising how many event staff security guards who just dont get it. I walk in with a cane and a ball and they always seem to have to call a supervisor.

"Duhh ...dis is different...duhh...dis is not the same ding... duh...U have to sit in a chair like everyone else duhh...dis is not what Im used to duhh"

"But sir, I have had multiple spine surgeries. I cant sit in your uncomfortable plastic chairs. Here is a note from my doctor"

"Duhh, I gotta show dis note to my boss duhh...We dont see too many of u invalids. If U throw that ball we are gonna throw u outta here."

"Yeah sure, I went through all this trouble with a cane, a ball, a doctors note, and a wheelchair accessible seat, just so I can throw my $25 exercise ball away into the crowd and get kicked out."

Man I have even been to a broadway show where it took them 20 minutes to figure out that I actually bought a wheelchair seat for a reason. They were trying to squeeze me into the middle of a row and expected me to sit on a ball, on top of a chair! The wheelchair seat I bought was empty & available and they just couldnt understand that I wanted to sit where there was no seat to sit on. They finally got me to my seat but it was like pulling teeth. I had to tell my life story to each different usher.
I NEED A WHEELCHAIR SEAT BECAUSE I BRING MY OWN SITTING DEVICE!!! WHY IS THIS SO HARD TO UNDERSTAND? Gosh!

I think those massage chairs that you see at the mall where people kind of kneel, look real comfortable. I may get one. Until then, remember that diners have counters and alot of restaurants have bars. Just stand at the bar & eat dinner. I've been doing it for 6 years.