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 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!

[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."

[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 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.

[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.