7 Months Post Bertagnoli ADR with Continued Neuropathy

[Katherine234]

I went to Germany last May with Mark and had 3 level lumbar ADR (S1-L3) in Straubing. I posted a few times before the surgery and have not participated in the forum for awhile. I apologize for being the equivalent of a fair weather friend but I really need some support. I will appreciate any comments.

I went back to work after 4 months and at a company meeting a few weeks later my legs were on fire. It was so scary. Basically, it has continued since then with varying intensities and locations. I've had two caudle epidurals and have gone from 300 a day of gabapentin to 2400 a day. I'm sleepy and trying to do a demanding corportate job at a company where there have been layoffs. Some days I feel relatively OK, other days it doesn't seem to matter what I do. Positions that were once comfortable and good for pain relief now can make things worse (laying on my back).

Right now things have settled in my feet and I have not had to travel for work for 6 weeks. I'm concerned that when I go back to regular travel (30-40% of the time) things will balloon again.

I took my time getting out of the brace - 5 months and I wonder if I'm having trouble because of that. I don't think that's logical but what if the nerves developed adhesions becasue I wasn't moving enough. I'd had problems for so long - since I was a teen - and I'd had to learn to be super careful (right movements, rest, core strength training etc.) that I was afraid to go too fast and my body seemed to need it. What finally got me out of it was when the burning in my legs became worse when I wore it.

I just wonder if my outcome is my fault. I enjoyed my time off, I walked, rested, read, went to the beach. Now I feel awful. Maybe I didn't take it seriously enough.............

I can relate to Jamie's comments. I'm not suicidal but I'm pretty down. If I lose my job I'm in a mess. I'm single with a mortage and all my benefits are through my job. I feel like I don't have a safety net without that job and it's really hard to care much about corportate non-sense right now.

Please help me with some perspective
Katherine

[jamie5136]

Wow, same surgery, same doctor, same age and still pain.... mine is sitting pain and some leg pain and only getting worse. From what I see on these forums, the ADR is certainly not for everyone. I am now being told I need 1-3 fusions, which would delete my whole surgery with Dr. B. I should have just gotten a fusion from day one and saved all of that money. I was never told why my discs sunk, nothing... they began to sink right away, but they never caught it and now want more money to fix it! So, they want me to go more broke, etc. Any normal human being would be sad beyond belief and angry.

What has Dr. B told you... but, I have been told it is 3 months to get a call from him. This is not fair. I hope that these ADR's are approved here in the states so people can get care in the states and address issues immediately.

Do you have subsidence? How are your x-rays?

Could just be post surgery pain, but I am no expert. Have you had tests in your legs to test function? Any injections in your back? MRI's, Cat Scans? I don't think you are supposed to wear that brace for 5 months, or at least this is what I was told.

I am sorry you are going through this. Many days I wish a meteor would fall out of the sky and konk me on the head... my days are consumed with my back/sitting pain. My family is so fabulous and my boyfriend is incredible.... so, that is good, but my boyfriend wants to get married, but why marry a cripple? This pain does a major number on one's self esteem, especially if you work, are used to working and rely on your salary to live.... I was going to get my PhD, but now I can barely sit and type and do regular work from home.

You can call me at any time, but I am not a doctor, I just had the same exact surgery as you with the same doctor, so I might have some insight.

Good luck and hang in there!

[Katherine234]

Jamie,

I would like to talk. When it comes to sharing not so positive stuff I'm pretty private - probaly too much so. Will you send me a number where I can call you using the private message function? I'll call but probably not right away. I'm pretty overwhelmed.

My X-rays look good. No sinking or slidiing. I had vertoboplasty at all 3 levels even though my bone scan was normal. Dr. B got in there and thought I needed it. I've had neuropathies on and off in different places for years but they have always resolved with rest and strength training. I just now can contract my abdomin without making the burning go through the roof. I guess that is progress.

I think your situation requires attention in a way mine does not. I have contacted Dr. FM and got the same advice as from my surgeon here - rest, pain management, time to heal. My sugeon here said he has seen a few anterior patients have nerve irritation post surgery. My surgeon here has done about 40 single level ADR's and has trained with Dr. B so he has some pretty good knowledge although he has never followed a 3 level ADR before.

I do think we share the same feelings of hopelessness and fear. I tend to isolate when things are not going well so beyond a few close friends I have let my social network shrink. It's hard for folks to get it when you can move around fine yet you are talking about being in pain. For me - I just don't want to go anywhere or explain anything or sit there and hurt and pretend to follow the conversation etc. I feel like that sounds so awful but it's how I feel.

I agree with the person who posted about wellbutrin. It's used in patients who don't do well on regular anti-depressants like prozac or cymbalta. It doesen't seem to give folks that bouncing off the wall feelling. I take it with a small amount of zoloft and anti-anxiety meds and that works well for me. Maybe you could tolerate the wellbutrin.

It's good to talk. Take care, Katherine

[jamie5136]

Wow, Dr. B did the cement at all three levels. Wish he did that for me.... Had he done that, I would not be in this position. Maybe he is doing this for all patients now after so many people have had subsidence (I know of three so far) and he does not want to risk it... too late for me.

Yes, I isolate and people don't get it... I just want to curl up in a ball and sleep and sleep and sleep... but, I don't sleep w/out pills, so I have to stay up and worry about my pain and my anger.

Again, I am not a doctor, but honestly, I think that if your discs are in place and you have no issues with the structure, you will eventually heal; it takes time. It has only been 7 months and honestly, I have heard it can take over one year. So, my thought is to follow the doctor's advice.

Interesting to know he did the 3 level vertoplasty on you... guess he learned his lesson there. I hear some doctors do that in ALL cases... I will IM you.

Originally Posted by Katherine234

Jamie,

I would like to talk. When it comes to sharing not so positive stuff I'm pretty private - probaly too much so. Will you send me a number where I can call you using the private message function? I'll call but probably not right away. I'm pretty overwhelmed.

My X-rays look good. No sinking or slidiing. I had vertoboplasty at all 3 levels even though my bone scan was normal. Dr. B got in there and thought I needed it. I've had neuropathies on and off in different places for years but they have always resolved with rest and strength training. I just now can contract my abdomin without making the burning go through the roof. I guess that is progress.

I think your situation requires attention in a way mine does not. I have contacted Dr. FM and got the same advice as from my surgeon here - rest, pain management, time to heal. My sugeon here said he has seen a few anterior patients have nerve irritation post surgery. My surgeon here has done about 40 single level ADR's and has trained with Dr. B so he has some pretty good knowledge although he has never followed a 3 level ADR before.

I do think we share the same feelings of hopelessness and fear. I tend to isolate when things are not going well so beyond a few close friends I have let my social network shrink. It's hard for folks to get it when you can move around fine yet you are talking about being in pain. For me - I just don't want to go anywhere or explain anything or sit there and hurt and pretend to follow the conversation etc. I feel like that sounds so awful but it's how I feel.

I agree with the person who posted about wellbutrin. It's used in patients who don't do well on regular anti-depressants like prozac or cymbalta. It doesen't seem to give folks that bouncing off the wall feelling. I take it with a small amount of zoloft and anti-anxiety meds and that works well for me. Maybe you could tolerate the wellbutrin.

It's good to talk. Take care, Katherine

[dshobbies]

Katherine,

Just had a surgery myself and promised myself I would stay off the forum for awhile but I too had legs on fire. This is nerve pain. I was taking 2700 mg of Neurontin daily, (switched to Lyrica, supposedly less side effects) for two years. My ankle and foot still bother me. The big difference is my pain began right after surgery and yours began after four months. My nerve damage was caused during surgery thus the immediate pain. Why yours started after four months IMHO, I think needs investigation. If you don't already have a pain management doctor, find one and like all doctors, some are better than others. Perhaps this is some kind of delayed reaction??? but you should find out for sure. I doubt you caused it. FYI, I should probably still be on either N or L but choose to live with the now very controllable pain. This is a personal choice.

Jamie, this is quite different from sitting difficulties which I don't think relates to nerve pain but comes from, among other things, the tailbone pushing up on the spine. For the time being, until you either have revision surgery or ???, you might try using something called a Tush Cush, a pillow with the tailbone section cut out, available at Relax the Back stores. Others have them but their quality is the best and they're not terribly expensive. While sitting, it takes some of the pressure off your tailbone.

Also tried wellbutrin and reacted quite badly. Caused permanant tinnitis, a lesser side effect.

Good luck, Dale

[Katherine234]

Dale and Jamie - Thanks

I posted a picture on my profile. It's with a nurse at St. Elizabeth's hospital in Straubing. I think her name was Helga but she spoke no English. At first she seemed very stern but we warmed to each other and I was sad to leave her. We had to practically drag her into the picture. Turns out she was rather shy.

I have a celiac like syndrome (no gluten) so food was an issue for me. I brough some of my own food including jello and Helga was the one who brought it to me once I was ready for more than broth. Things really were going beautiful for me until 4 months. I hope I'm just going through healing pains. Please keep the support coming. It's helping. Thanks so much.

[dridobits]

Katherine and Jamie, I so understand the emotional aspect of what you guys are going through. I didn't have ADR but fusion and the thought of going back to work at 3-4 months astounds me. I know ADR and fusion are not the same obviously but these are both major surgeries.

Seven months is still a matter of months and it seems things can take a long time to heal.

My life is so different now from before my accident I have no idea what normal is and barely remember it but know it was a lot better than things are now. I just have to keep that saying in mind that I can't change my circumstances but I can my attitude. I've been using this on myself when I get really depressed as this stuff obviously can get pretty discouraging to say the least.

Please hang in there, your still recovering. I'm impressed your working!!!

[Rob Wilson]

If you had leg pain and stenosis before ADR and you still have leg pain then there is always the possibility that the stenosis is still there. Just by placing ADR in between the discs does not necessarily widen the foramen. It is very tedious surgery to widen posterior foramen with anterior ADR surgery. Many OS's state that ADR is mainly for back pain not leg pain.

[fuzzy]

My lumbar adr surgery killed most of my legpain.

My cervical killed the remaining leg pain in my right leg.

Leg pain can be triggered by cervical myleopathy, just like headaches.

BUT, I still have plenty of burning, termperature insensitivity which I believe is cause by nerve damage to my myleon. I hope it will resolve over the next several years. It is documented it can take a long time.

Regarding 5 month in the brace, that is a little long. Chance is that your nerves are waking up, just as you are also starting to use your back more.

Hang in there!

[Katherine234]

Originally Posted by dridobits

Katherine and Jamie, I so understand the emotional aspect of what you guys are going through. I didn't have ADR but fusion and the thought of going back to work at 3-4 months astounds me. I know ADR and fusion are not the same obviously but these are both major surgeries.

Seven months is still a matter of months and it seems things can take a long time to heal.

Please hang in there, your still recovering. I'm impressed your working!!!

The emotional aspect is so hard. I'm wondering if I did the right thing, if my actions have somehow brought the burning on, or if I can continue to work at the level I did before the surgery. The angst is hugh and it makes it hard to concentrate on much of anything, work or otherwise. The emotional part - sometimes I feel better physically and therefore emotionally and vice versa is hard for my family (and others) to understand. I really am scared I won't be able to keep up at work or if I am the cost will be so high it won't be worth it. I don't really want to go on disability but in some ways it would be a hugh relief. Thanks for your support

[Katherine234]

Originally Posted by dshobbies

Katherine,

Just had a surgery myself and promised myself I would stay off the forum for awhile but I too had legs on fire. This is nerve pain. I was taking 2700 mg of Neurontin daily, (switched to Lyrica, supposedly less side effects) for two years. My ankle and foot still bother me. The big difference is my pain began right after surgery and yours began after four months. My nerve damage was caused during surgery thus the immediate pain. Why yours started after four months IMHO, I think needs investigation. If you don't already have a pain management doctor, find one and like all doctors, some are better than others. Perhaps this is some kind of delayed reaction??? but you should find out for sure. I doubt you caused it. FYI, I should probably still be on either N or L but choose to live with the now very controllable pain. This is a personal choice.

Good luck, Dale

Dale,

I've been wondering about Lyrica. My psychiatrist prefers neurontin, I haven't asked my PM specialist about it (I do like my PM and to date think he's pretty good). I work with doctors (rheumatologists) for my job and one of them suggested Lyrica and said he himself was on it and thought it was better than neurontin. What was your experience? If I would feel less sedated/have better memory and motivation, or better pain control etc. it could be worth it to switch. Did you taper down your N before switching to L? For me I go into withdrawal pretty quick with N and will have to taper off it slowly if things ever settle down.

Mark has also suggested looking into other causes - I have so little energy and I wonder/hope it's just taking a long time for my nerves to heal.

What's IMHO? Did you have surgery for the leg nerve pain? If yes, what did you have done? Thanks for your support.

Katherine

[Katherine234]

Originally Posted by Rob Wilson

If you had leg pain and stenosis before ADR and you still have leg pain then there is always the possibility that the stenosis is still there. Just by placing ADR in between the discs does not necessarily widen the foramen. It is very tedious surgery to widen posterior foramen with anterior ADR surgery. Many OS's state that ADR is mainly for back pain not leg pain.

Rob,

I had both low back & leg pain as well as stenosis (at L3-L4 I think) before the surgery. I don't understand what could cause stenosis besides a blown disc or congenital spinal canal narrowness. In my 20's one doc said I had congenital narroowness but no one else has made this comment - including Dr. B or FM). Will you explain in more detail what you mean? Would continued stenosis show up on MRI? Thanks for your comments

Katherine

[jamie5136]

Well, the pain originates about 3 inches above where the butt crack starts, so lower back. So, when I lay down slightly reclined, it hurts and then sitting hurts. I consulted with a tailbone "guy" and he said my tailbone was not broken and hence was not the issue. I have also had three unsuccessful ganglion impar injections and I have tried every pillow available with zero success. the pain is hot and stabbing, so is some type of nerve pain. Also understand that even before I had the ADR, I still had sitting type pain, but assumed it was discogenic; it obviously is not.... but, nobody can seem to tell me what it is.. doctor's seem to ignore me when I say I have sitting pain. And yes, I have to have a fusion due to the subsided disc. Just trying to decide if I should do the DSS tooling with Dr. Pettine or a plain hard fusion... Dr. B said to use the DSS...TBI does not do this much, I think, so this is why they have said a plain hard fusion. I never know who to believe or trust anymore. I am going to get like 4-5 opinions and then go from there.

Originally Posted by dshobbies

Katherine,

Just had a surgery myself and promised myself I would stay off the forum for awhile but I too had legs on fire. This is nerve pain. I was taking 2700 mg of Neurontin daily, (switched to Lyrica, supposedly less side effects) for two years. My ankle and foot still bother me. The big difference is my pain began right after surgery and yours began after four months. My nerve damage was caused during surgery thus the immediate pain. Why yours started after four months IMHO, I think needs investigation. If you don't already have a pain management doctor, find one and like all doctors, some are better than others. Perhaps this is some kind of delayed reaction??? but you should find out for sure. I doubt you caused it. FYI, I should probably still be on either N or L but choose to live with the now very controllable pain. This is a personal choice.

Jamie, this is quite different from sitting difficulties which I don't think relates to nerve pain but comes from, among other things, the tailbone pushing up on the spine. For the time being, until you either have revision surgery or ???, you might try using something called a Tush Cush, a pillow with the tailbone section cut out, available at Relax the Back stores. Others have them but their quality is the best and they're not terribly expensive. While sitting, it takes some of the pressure off your tailbone.

Also tried wellbutrin and reacted quite badly. Caused permanant tinnitis, a lesser side effect.

Good luck, Dale

[dshobbies]

Katherine,

It pays to have children - sometimes. IMHO is in my honest opinion.

For me Lyrica presented all the side effects plus weight gain as did the Neurontin. Both muted my brain and my eyesight, something I found intolerable since I paint and write.

Yes, I did withdraw from N slightly before switching to L because I tried the lowest dose of Lyrica first. Weird but I withdrew from narcotics with no problem but both N & L gave me problems.

Many people have less side effects with Lyrica and it is definitely worth trying. Everyone is an individual and finding what's right for you can take time but usually worth the effort. In this instance, I'd go with your pain management doctor.

And no, I didn't mean to suggest that your tailbone was broken, but it does push up on your spine when you sit on it, thus your pain when sitting if it's pressing on something... or????

I had very little leg pain prior to surgery. My nerve root was 'irritated' during surgery and though much better, is still bothering me. In this instance, I found acupuncture, suggested by my pm, to be extremely beneficial. I started it about 18 months out but was told had I started 6 months out, my improvement would have been better.

You mentioned you pain is stabbing. Is this constant or intermittant? If intermittant, it also may be your nerves waking up as fuzzy suggested.

If you pm doesn't believe you, find another doctor who does. Nerves take too long to heal and damage may become permanant.

Also, if you have the means, you might want to consult with Dr. Regan in Los Angeles. He seems to have a lot of experience in revision surgery. Talk to Mark about him.

Dale

[Rob Wilson]

Katherine,

I am just saying that if you had stenosis (narrow foramen) pre ADR surgery then you might still have stenosis post ADR. Just by placing ADR in between the discs does not necessarily widen the foramen. It is very tedious surgery to widen foramen with surgery from the front stomach side.

[phylly]

Katherine,
I just recently switched to a combo of Lyrica and nuerontin after being brain dead and sleepy for two years. It has been miraculous. I feel I have my mind and my personality back. It may be worth giving it a try. I can't believe I waited so long and so much of my nerve pain quieted down also. Obviously it's not all gone but much more manageable. I hope this helps you a bit?

[grantwb1]

Hello Kathrine,

I am about 4 months post op from a one level fusion l5-s1 and can say that the nerves in my right leg/back have gone up and down in pain levels. I have a sitting job and have been back to work for about two months. I am now in PT and at first my nerve pain got better but now has flared back up. My PT says not to worry that the nerves are still figuring out they have been tortured. I personally will not be worried bad until I get a year out.

I really understand getting depressed over this too, when my leg pain is bad it cuts my happiness factor in half.

I love lyrica, of all the meds I have taken this is the best, gets rid of a lot of my nerve pain and for me nowhere near the fog that nurontin gives. I am an IT guy so I need my snap and lyrica enables me to have snap and get relief.

wishing a no pain day for all my spiney friends!!!!

I am available for PM's if you have any Q's

[Maria]

Grant,
So glad to hear you give Lyrica this endorsement! I just this moment while writing this got a call from my PM's office stating they are sending me a Lyrica script in the mail to fill and start taking!!!! Whooohooo! I sure hope it will work for me as I've been on Neurontin since '98 and have had such fog it's killer.

My hub is an IT guy too so I know you've really got to be sharp~ then there's people like me.. the end users.. duhhhh

[zfontana]

Originally Posted by phylly

Katherine,
I just recently switched to a combo of Lyrica and nuerontin after being brain dead and sleepy for two years. It has been miraculous. I feel I have my mind and my personality back. It may be worth giving it a try. I can't believe I waited so long and so much of my nerve pain quieted down also. Obviously it's not all gone but much more manageable. I hope this helps you a bit?

who did your revision surgery?

[naki]

Originally Posted by jamie5136

Wow, same surgery, same doctor, same age and still pain.... mine is sitting pain and some leg pain and only getting worse. From what I see on these forums, the ADR is certainly not for everyone. I am now being told I need 1-3 fusions, which would delete my whole surgery with Dr. B. I should have just gotten a fusion from day one and saved all of that money. I was never told why my discs sunk, nothing... they began to sink right away, but they never caught it and now want more money to fix it! So, they want me to go more broke, etc. Any normal human being would be sad beyond belief and angry.

What has Dr. B told you... but, I have been told it is 3 months to get a call from him. This is not fair. I hope that these ADR's are approved here in the states so people can get care in the states and address issues immediately.

Do you have subsidence? How are your x-rays?

Could just be post surgery pain, but I am no expert. Have you had tests in your legs to test function? Any injections in your back? MRI's, Cat Scans? I don't think you are supposed to wear that brace for 5 months, or at least this is what I was told.

I am sorry you are going through this. Many days I wish a meteor would fall out of the sky and konk me on the head... my days are consumed with my back/sitting pain. My family is so fabulous and my boyfriend is incredible.... so, that is good, but my boyfriend wants to get married, but why marry a cripple? This pain does a major number on one's self esteem, especially if you work, are used to working and rely on your salary to live.... I was going to get my PhD, but now I can barely sit and type and do regular work from home.

You can call me at any time, but I am not a doctor, I just had the same exact surgery as you with the same doctor, so I might have some insight.

Good luck and hang in there!

Had ADR done by Dr. Jung at Beta Klinik in 2010, but I am still in same pain, some times, worse! My hard earned $ GONE! Fusion? Might have to go that dreaded route!

[zfontana]

[quote=naki;17122]Had ADR done by Dr. Jung at Beta Klinik in 2010, but I am still in same pain, some times, worse! My hard earned $ GONE! Fusion? Might have to go that dreaded route!

How was your facets before surgery?

[Maria]

I'm rereading this thread and wondering how people are doing? I had terrible nerve pain thru out my lower half of my body first episodically before my first spine surgery in '89. Then after that it went away only to return with a horrendous vengence after my '92 percutaneous discectomy. Went on Elavil 50mg for about 5 years until I was put on Neurontin for 12 years (1800mg/day) and then the last time I posted on this thread I was getting a Lyrica script. Got 10 years worth of ESIs which also helped my back pain greatly and I think this pain to some degree tho nothing like the back pain.

Never used the Lyrica script. Stopped taking Neurontin (gabapentin) I think nearly 3 years now. Have not had the neuropathies like before. Occasionally will have them very lightly tho nothing like before.

I was once so down in the dumps with life with this torturous kind of pain. I am very thankful for the improvement in my pain and while I know it sounds like an awful amount of time to have to go thru to improve I have to say that it's like I never had that type of pain (has been this way since about 2006).

So I'm just wondering how others here are doing since the origination of this thread.