mmmartino
01-06-2006, 05:51 PM
I'm looking for someone to talk to who is in the same (or similar) situation as me. I'm at kind of a low point and it would help to know someone else is out there. I had a microdiscectomy six months ago at L5/S1 and my leg has been numb and weak ever since. Now doctors think a nerve was severed and there is no hope for regeneration. I can't walk more than 10 minutes, can't balance, can't work (I'm a documentary producer for Discovery Channel) and have generally slipped into a bit of a funk.
My back feels pretty strong. That's good. I don't have leg pain, just numbness -- so I do feel for all of you that have the severe pain. But it's been a tough thing to accept and to be told there really isn't a reason to hope has been the toughest.
Anyway, would love to hear if anyone else has ended up like me. Doctors say I am one of the 10% who will end up with nerve damage.
My back feels pretty strong. That's good. I don't have leg pain, just numbness -- so I do feel for all of you that have the severe pain. But it's been a tough thing to accept and to be told there really isn't a reason to hope has been the toughest.
Anyway, would love to hear if anyone else has ended up like me. Doctors say I am one of the 10% who will end up with nerve damage.
Sponsor
Taimse
01-06-2006, 06:32 PM
mmmartino. I can certainly understand your funk. I am in one too, as I am looking at having to do something different. I found out last week, that the surgeon who did my carpal tunnel surgery in Feb, nicked a nerve. It maybe permanent too, but I won't know until about a year. Doc that redid surgery Dec. 19, said the nerves at least have a chance to regenerate now, but it may take a year. This past year has been a struggle and I don't really want to repeat it.
I dont' know anything about nerve grafting, but have read a few articles where it has been mentioned. Doc at Mayo who I saw in sept for another opinion mentioned something about nerve grafting, but he told be to go home and live with what I have.
I dont' know anything about nerve grafting, but have read a few articles where it has been mentioned. Doc at Mayo who I saw in sept for another opinion mentioned something about nerve grafting, but he told be to go home and live with what I have.
ladybird988
01-30-2006, 11:36 PM
Hi there. I saw your post and it broke my heart. I am in the same situation as you, only my nerve damage occurred before the microdisectomy. The L4/L5 disk ruptured and damaged the sciatic leaving me unable to lift my toes and having to drag my leg. Are you dragging your leg?
I'm at 18 months post op and the doctors consider that early in the healing process. EARLY! I've been told 3 to 5 years to heal.
Like you, I have numbness that is letting up slowly and leg and foot weakness, that is strengthening slowly. I saw the most improvement at the one year mark.
Strangely, I will go 6 months with little to no improvement, then get increased pain and see an overnight improvement (for example, awoke one morning to find my leg went from 20% strength to 70% overnight). I have been told that it is normal to do that, but mostly people make small improvements.
I don't know about you, but my leg strength can start at 70% when I awake and then fluctuate throughout the day, all the way down to 5% where I can hardly lift my leg. It makes it impossible to do things.
Unlike you, I have severe pain up to a level 10 in the leg and foot that feels like a butcher knife.
I don't know if your doctors know for sure that you won't recover. Are they saying you won't recover because they think the nerve is severed because you have no pain?
From my experience, they know little about nerve damage. they guess. My doctors have been very positive. This is what I have been told. That though it is hard, exercise, because exercise increases the blood flow which heals the nerve, and building muscle also strengthens the nerve through blood flow. I was told those that exercise heal. I know, it's hard. I take a percocet and exercise because I want my leg back.
I limp all over and drag myself to the pool 4 days a week where I can do water walking (and it doesn't matter if I fall!) or better yet, use a flotation belt that allows me to move that leg better in a slow water jog because I'm suspended in the water. The water also allows you to stretch easier in ways you can't on land, especially with this condition. And as you know, our muscles get all out of whack from limping, so stretching is imperative.
Walking is hard with a weak leg. The pool is much better.
I will say that after doing water exercises 7 days a week for 2 months I lay in bed one night and felt my entire foot bathed in electricity and then BAM i could feel my toes again. I believe it was the exercise.
A pain doctor told me that we need to exercise slowly, so we can do more, because if you're like me, exercise causes my leg to weaken (sometimes I have only 5% strength in that leg and cannot even put my weight on it. Hence, a cane).
I had felt the toe numbness let up for 3 seconds twice, and that gave me hope. So, if you have any signs of numbness letting up, I'd say there is hope. Have you had any?
For me, they say I will regain most of the use of my leg and foot but will always have some weakness. They don't know if the pain will ever let up. Actually, it keeps increasing.
Otherwise, my advise to you is the same thing I'm now doing. I've realized the doctors are worthless in treating this, so it's time to find other help through nutrition and supplements. And I'm going to locate a naturopath. I get the impression that when nerve damage is involved, doctors don't want to touch you.
It's not enough to treat the pain (in your case there is none or little), we have to supply our bodies with what we need to HEAL.
These are the supplements I've read about that help nerve damage to repair:
Acetyl L-carnitine (for nerve health)
alpha lipoic acid
benfotiamine
R+ lipoic acid
magnesium
L-glutamine (acts like neurontin from what I'm told)
and for muscle problems and fibromyalgia: malic acid and magnesium. You'll need to research these.
As a producer (I'm a writer) you need to take that skill and research all you can (as you're doing) about nerve damage. This is the story of your life - literally.
It IS possible to heal. You need to believe that. Though you do not have pain, I recommend the book "The Pain Cure" by Dharma Singh Khalsa. It explains a lot about how to heal from this type of thing, in a holistic manner, from diet to supplements to exercise to meditation. It was recommended to me by a leading back surgeon who cured his pain with the help of the book. That's a good place to start. He lists a ton of supplements and explains it well.
I hope this helps. The way I see this is, if I can help ONE person somehow, from the horror I am experiencing, then it's all worth it. I am writing a book about spirituality and healing (from something else) and then this hit, and now it's looking like I need to write a book just about neuropathy! Only I don't have time because I'm focused on the other book. Maybe you can, and educate the world about it? We need to find a positive in this. I have to know I can help others. That's all that gets me through most days when i'm screaming in level 10 pain.
I will say I am finding it hard to find information on nerves and neuropathy that is written in terms the average adult can understand. Nor any books by people who have suffered it. If anyone knows of any books, please list!
I am trying to get into a pain program at the hospital because my pain is very intense, and they have a nutritionist, biofeedback expert, physiotherapist (spelling?) etc who I am hoping will help. This turns into a monstrosity of a condition to deal with, affecting your whole life, so the faster you get help, the better. I am so depressed, I can barely keep going.
Good luck to you. ALL of you. I will check back here periodically. Hope that helps. I believe you can heal.
I'm at 18 months post op and the doctors consider that early in the healing process. EARLY! I've been told 3 to 5 years to heal.
Like you, I have numbness that is letting up slowly and leg and foot weakness, that is strengthening slowly. I saw the most improvement at the one year mark.
Strangely, I will go 6 months with little to no improvement, then get increased pain and see an overnight improvement (for example, awoke one morning to find my leg went from 20% strength to 70% overnight). I have been told that it is normal to do that, but mostly people make small improvements.
I don't know about you, but my leg strength can start at 70% when I awake and then fluctuate throughout the day, all the way down to 5% where I can hardly lift my leg. It makes it impossible to do things.
Unlike you, I have severe pain up to a level 10 in the leg and foot that feels like a butcher knife.
I don't know if your doctors know for sure that you won't recover. Are they saying you won't recover because they think the nerve is severed because you have no pain?
From my experience, they know little about nerve damage. they guess. My doctors have been very positive. This is what I have been told. That though it is hard, exercise, because exercise increases the blood flow which heals the nerve, and building muscle also strengthens the nerve through blood flow. I was told those that exercise heal. I know, it's hard. I take a percocet and exercise because I want my leg back.
I limp all over and drag myself to the pool 4 days a week where I can do water walking (and it doesn't matter if I fall!) or better yet, use a flotation belt that allows me to move that leg better in a slow water jog because I'm suspended in the water. The water also allows you to stretch easier in ways you can't on land, especially with this condition. And as you know, our muscles get all out of whack from limping, so stretching is imperative.
Walking is hard with a weak leg. The pool is much better.
I will say that after doing water exercises 7 days a week for 2 months I lay in bed one night and felt my entire foot bathed in electricity and then BAM i could feel my toes again. I believe it was the exercise.
A pain doctor told me that we need to exercise slowly, so we can do more, because if you're like me, exercise causes my leg to weaken (sometimes I have only 5% strength in that leg and cannot even put my weight on it. Hence, a cane).
I had felt the toe numbness let up for 3 seconds twice, and that gave me hope. So, if you have any signs of numbness letting up, I'd say there is hope. Have you had any?
For me, they say I will regain most of the use of my leg and foot but will always have some weakness. They don't know if the pain will ever let up. Actually, it keeps increasing.
Otherwise, my advise to you is the same thing I'm now doing. I've realized the doctors are worthless in treating this, so it's time to find other help through nutrition and supplements. And I'm going to locate a naturopath. I get the impression that when nerve damage is involved, doctors don't want to touch you.
It's not enough to treat the pain (in your case there is none or little), we have to supply our bodies with what we need to HEAL.
These are the supplements I've read about that help nerve damage to repair:
Acetyl L-carnitine (for nerve health)
alpha lipoic acid
benfotiamine
R+ lipoic acid
magnesium
L-glutamine (acts like neurontin from what I'm told)
and for muscle problems and fibromyalgia: malic acid and magnesium. You'll need to research these.
As a producer (I'm a writer) you need to take that skill and research all you can (as you're doing) about nerve damage. This is the story of your life - literally.
It IS possible to heal. You need to believe that. Though you do not have pain, I recommend the book "The Pain Cure" by Dharma Singh Khalsa. It explains a lot about how to heal from this type of thing, in a holistic manner, from diet to supplements to exercise to meditation. It was recommended to me by a leading back surgeon who cured his pain with the help of the book. That's a good place to start. He lists a ton of supplements and explains it well.
I hope this helps. The way I see this is, if I can help ONE person somehow, from the horror I am experiencing, then it's all worth it. I am writing a book about spirituality and healing (from something else) and then this hit, and now it's looking like I need to write a book just about neuropathy! Only I don't have time because I'm focused on the other book. Maybe you can, and educate the world about it? We need to find a positive in this. I have to know I can help others. That's all that gets me through most days when i'm screaming in level 10 pain.
I will say I am finding it hard to find information on nerves and neuropathy that is written in terms the average adult can understand. Nor any books by people who have suffered it. If anyone knows of any books, please list!
I am trying to get into a pain program at the hospital because my pain is very intense, and they have a nutritionist, biofeedback expert, physiotherapist (spelling?) etc who I am hoping will help. This turns into a monstrosity of a condition to deal with, affecting your whole life, so the faster you get help, the better. I am so depressed, I can barely keep going.
Good luck to you. ALL of you. I will check back here periodically. Hope that helps. I believe you can heal.
simby
02-01-2006, 06:05 AM
hi martino,
i had a micro-d on l4/5 in may, 2004. I was one of the unlucky few (5%) that then developed spondy (slippage that ended up bone crunching bone with the nerve being flattened in between).
The pain was worse than ever.
In July, 2005, i had a fusion at that same level. I am now 6 months post-op. While i still have pain issues and neuropathy, i am a lot better off than i was pre-op.
The nerve damage that caused the foot drop was believed to be permanent. Surprisingly, i could walk on my heels and get that left foot's toes and ball of foot to come off the floor. So it seems that the damage is lessening.
it can take up to a year and a half for the nerves to regerate. Even when the nerves are severed on purpose to relieve pain, they will usually regenerate with time.
sending hugs and good, healing thoughts.
sims
i had a micro-d on l4/5 in may, 2004. I was one of the unlucky few (5%) that then developed spondy (slippage that ended up bone crunching bone with the nerve being flattened in between).
The pain was worse than ever.
In July, 2005, i had a fusion at that same level. I am now 6 months post-op. While i still have pain issues and neuropathy, i am a lot better off than i was pre-op.
The nerve damage that caused the foot drop was believed to be permanent. Surprisingly, i could walk on my heels and get that left foot's toes and ball of foot to come off the floor. So it seems that the damage is lessening.
it can take up to a year and a half for the nerves to regerate. Even when the nerves are severed on purpose to relieve pain, they will usually regenerate with time.
sending hugs and good, healing thoughts.
sims
angelwings171
02-15-2006, 10:22 AM
I am dealing with a L5/S1 problem at the moment. No slippage or disc problems yet.
Are you attending PT? If so, have them check your pelvis to make sure it is in place. My hips are continuosly shifting. The left side will be higher than the right by as much as 3 inches with one side shifted backwards. Once they are able to "put everything back in place" the pain subsides immediately making sitting, standing, and walking possible.
Also an e-stem has been a savior when nothing else works.
I am just beggining this journey am also looking for alot of information to help with this situation.
Angela
Are you attending PT? If so, have them check your pelvis to make sure it is in place. My hips are continuosly shifting. The left side will be higher than the right by as much as 3 inches with one side shifted backwards. Once they are able to "put everything back in place" the pain subsides immediately making sitting, standing, and walking possible.
Also an e-stem has been a savior when nothing else works.
I am just beggining this journey am also looking for alot of information to help with this situation.
Angela
mmmartino
02-15-2006, 07:39 PM
Thank you so much to all of you who responded to my message.
Ladybird, thank you especially for sharing your story. I have been waiting and waiting for someone to tell what it feels like when (if) feeling comes back and I so appreciate your description of what has been going on with you. It's like, no-one can give me any answers and I feel like I'm floundering in a vacuum! I guess it is just so different for everyone there is no one way to say what are good signs and what are bad (especially when signs that I might be getting feeling back, like tingling or pain, could also be bad signs). It really is so confusing and oftentimes depressing.
To answer your question, yes, I can lift my leg and my toes. I can't stand on tiptoe or flex most of the muscles in that leg. My calf and glutes have completely atrophied.
Ladybird, I was also glad (well, you know what I mean) to hear that you also feel that the leg strength fluctuates throughout the day. I truly thought I was going crazy and did not understand how that could happen. One day it feels like what my new version of "normal" is, the next day I can barely lift that leg to walk up stairs.
I hate to say it but to answer your other question, no, I do not feel that the numbness has let up at all. It has been six months since the surgery and everything feels exactly the same. I had been hoping that the changes are just so incremental that I don't notice them (one millimeter at a time), instead of thinking of this as the worst possible sign.
As far as exercise goes, yes, I am giving it all I've got. I try to swim and bike at the gym. I HATE walking, as I"m sure you understand. I still can't go more than 20 minutes at a time and my limp gets worse and worse.
Anyway, I really, truly appreciate everything that you have written. Please know that yes, you have helped one person feel better and more optimistic. Thank you for that.
Ladybird, thank you especially for sharing your story. I have been waiting and waiting for someone to tell what it feels like when (if) feeling comes back and I so appreciate your description of what has been going on with you. It's like, no-one can give me any answers and I feel like I'm floundering in a vacuum! I guess it is just so different for everyone there is no one way to say what are good signs and what are bad (especially when signs that I might be getting feeling back, like tingling or pain, could also be bad signs). It really is so confusing and oftentimes depressing.
To answer your question, yes, I can lift my leg and my toes. I can't stand on tiptoe or flex most of the muscles in that leg. My calf and glutes have completely atrophied.
Ladybird, I was also glad (well, you know what I mean) to hear that you also feel that the leg strength fluctuates throughout the day. I truly thought I was going crazy and did not understand how that could happen. One day it feels like what my new version of "normal" is, the next day I can barely lift that leg to walk up stairs.
I hate to say it but to answer your other question, no, I do not feel that the numbness has let up at all. It has been six months since the surgery and everything feels exactly the same. I had been hoping that the changes are just so incremental that I don't notice them (one millimeter at a time), instead of thinking of this as the worst possible sign.
As far as exercise goes, yes, I am giving it all I've got. I try to swim and bike at the gym. I HATE walking, as I"m sure you understand. I still can't go more than 20 minutes at a time and my limp gets worse and worse.
Anyway, I really, truly appreciate everything that you have written. Please know that yes, you have helped one person feel better and more optimistic. Thank you for that.
can'tdance
03-14-2006, 09:50 PM
I've been coping (sometimes better than others) with lower back and pelvic pain, muscle spasm and progressive muscle weakness since a traumatic childbirth fifteen years ago. While a hypermobile sacrum has long been presumed the culprit, I've had a nagging suspicion for some time that there is nerve damage and today a physical therapist voiced that same suspicion.
She said that she thinks I have "nerve damage and scarring" at L4-5, S-1 because of the clear involvement of the sciatic nerve. She asked me to wiggle my toes with the intent of "gliding" the nerve, and I immediately felt discomfort in the area of the piriformis muscle, with discomfort building since then in the quadratus lumbarum and pelvic floor, consistent with sciatic/pudendal nerve irritation.
I had an EMG years ago and it was "inconclusive" at L4-5. That was after five years of being bounced out of doctors' offices being told "it was all in my head". If I was strong enough, I would throw something at someone :mad: Last year my neurologist did some rather cursory elements of a physical exam and was satisfied that the "signals are getting through" at L4-5, so he saw no reason to be concerned.
For a long time I have noticed that lifting increases my pain -- is that so for any of you?
I don't seem to have any motor deficits, but I have significant muscle wasting on the left side, which is the side where I have pain. The Winter months when the weather is damp and cold, impact my condition very negatively -- moreso than would seem reasonable.
Does any of this resonate with any of you? I am so tired of pain and of my life getting progressively more limited. By the way, I don't mean to minimize what anyone else is experiencing by complaining about my own situation and I apologize if it comes across that way.
She said that she thinks I have "nerve damage and scarring" at L4-5, S-1 because of the clear involvement of the sciatic nerve. She asked me to wiggle my toes with the intent of "gliding" the nerve, and I immediately felt discomfort in the area of the piriformis muscle, with discomfort building since then in the quadratus lumbarum and pelvic floor, consistent with sciatic/pudendal nerve irritation.
I had an EMG years ago and it was "inconclusive" at L4-5. That was after five years of being bounced out of doctors' offices being told "it was all in my head". If I was strong enough, I would throw something at someone :mad: Last year my neurologist did some rather cursory elements of a physical exam and was satisfied that the "signals are getting through" at L4-5, so he saw no reason to be concerned.
For a long time I have noticed that lifting increases my pain -- is that so for any of you?
I don't seem to have any motor deficits, but I have significant muscle wasting on the left side, which is the side where I have pain. The Winter months when the weather is damp and cold, impact my condition very negatively -- moreso than would seem reasonable.
Does any of this resonate with any of you? I am so tired of pain and of my life getting progressively more limited. By the way, I don't mean to minimize what anyone else is experiencing by complaining about my own situation and I apologize if it comes across that way.
newtin
03-14-2006, 11:27 PM
[FONT=Franklin Gothic Medium]MMMartino:
I have been struggling with Lumbo Sacral Disc Disease with progressive Arachnoiditis for almost 25 years now. I broke my back at the L-5/S-1 level 24 years ago this coming May and caused all of my other existing problems to come to the forefront a lot sooner than they otherwise would have. I endure a level of pain known only to those who experience it not to mention the numbness, pins and needles and burning sensations that are ever present within my entire lower body. I did not answer your post to complain about my problems I just wanted to let you know that there are many out there that have similar problems to those of yours and none of them are any easier to deal with on a daily basis. You have to keep plugging along so to speak even though it seems to be at times useless to do so. I know that you are having problems dealing with the idea that there is nothing else anyone can do for you because I have been told the same thing several years ago but I still have problems accepting that fact but it is true. I wish that there were some words of wisdom to be had here in this scenario however, by this time you have heard them all. I certainly do not wish to be a downer nor do I wish to discourage you in anyway but the truth is not always easy to deal with but if you are like me I would much rather deal in facts of the matters at hand than with some rosy overpainted picture that produces false hopes or further distortions of the truths that we must deal with just to get through each and every day. Having said that, I would like to let you know that I would like to be there for you if and when there is any need for a friend to talk to about this or any other problem in this realm. I have never been one to share much of my private life but after experiencing the things that I have in the past 25 years from a Medical perspective that is, I did finally reconcile myself to the fact that I am not the only one out there and it does help to converse about the trials and tribulations that our problems bring to our lives on a daily basis every chance that we get. I will stop rambling for now but rest assured if you need me I will try to be there for you.
Always a friend,
Steve
I have been struggling with Lumbo Sacral Disc Disease with progressive Arachnoiditis for almost 25 years now. I broke my back at the L-5/S-1 level 24 years ago this coming May and caused all of my other existing problems to come to the forefront a lot sooner than they otherwise would have. I endure a level of pain known only to those who experience it not to mention the numbness, pins and needles and burning sensations that are ever present within my entire lower body. I did not answer your post to complain about my problems I just wanted to let you know that there are many out there that have similar problems to those of yours and none of them are any easier to deal with on a daily basis. You have to keep plugging along so to speak even though it seems to be at times useless to do so. I know that you are having problems dealing with the idea that there is nothing else anyone can do for you because I have been told the same thing several years ago but I still have problems accepting that fact but it is true. I wish that there were some words of wisdom to be had here in this scenario however, by this time you have heard them all. I certainly do not wish to be a downer nor do I wish to discourage you in anyway but the truth is not always easy to deal with but if you are like me I would much rather deal in facts of the matters at hand than with some rosy overpainted picture that produces false hopes or further distortions of the truths that we must deal with just to get through each and every day. Having said that, I would like to let you know that I would like to be there for you if and when there is any need for a friend to talk to about this or any other problem in this realm. I have never been one to share much of my private life but after experiencing the things that I have in the past 25 years from a Medical perspective that is, I did finally reconcile myself to the fact that I am not the only one out there and it does help to converse about the trials and tribulations that our problems bring to our lives on a daily basis every chance that we get. I will stop rambling for now but rest assured if you need me I will try to be there for you.
Always a friend,
Steve
can'tdance
03-15-2006, 01:09 PM
Steve,
Would you be willing to talk about the practical day-to-day aspects of how you cope? Do your symptoms wax and wane? Are there times when the best thing is just to shut down and do nothing for awhile and let the nerve irritation calm down?
I know you weren't responding to my post, but I, for one, could really benefit from knowing how someone who has done this for 25 years manages. Also, do you find that the more you try to rise above your situation the more others minimize it because they decide you "look okay to them"?
Thanks.
Would you be willing to talk about the practical day-to-day aspects of how you cope? Do your symptoms wax and wane? Are there times when the best thing is just to shut down and do nothing for awhile and let the nerve irritation calm down?
I know you weren't responding to my post, but I, for one, could really benefit from knowing how someone who has done this for 25 years manages. Also, do you find that the more you try to rise above your situation the more others minimize it because they decide you "look okay to them"?
Thanks.
newtin
03-17-2006, 03:11 AM
Can't Dance:
Glad to converse with you anytime. Let me know how and when.
Steve
Glad to converse with you anytime. Let me know how and when.
Steve