Degenrative disk disease and severe nerve damage

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MT Lady
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Date Joined Jul 2008
Total Posts : 969
   Posted 10/19/2017 7:45 PM (GMT -7)   
Hello fellow pain warriors. I've been a member for many many years, just haven't posted in quite a while. I also have fibromyalgia and that is where I use to spend most of my time. I had back problems back then, diagnosed with fibro 30 years ago, but I thought it was a part of fibro. I've learned over the years that I have degenerative disk disease throughout my thoracic and lumbar spine. December, 2016, 11 months ago, I had surgery; L3/4 and L4/5 laminectomy for spondylolithesis and severe spinal stenosis, and L4/5 fusion. Four weeks post surgery, nerve pain down leg (right) was gone! Then, it came back, only worse and has continued for 11 months, but also in my left leg. I've gone to phys therapy on and off throughout this time period and today, I have a nerve and muscle test (EMG/NCV) performed by a neurologist. He share some information, stating it is preliminary and would have final results sent to my surgeon and PCP. He told me I have severe nerve damage from T2 through S1 on my right leg, and L5/S1 severe nerve damage on the left leg. He then asked me if the surgeon left any hardware in me. I said yes, there are rods and screws to hold the fusion. I asked if he thought that had something to do with this nerve damage. He told me to call my surgeon and he will review results and discuss with me. So I left messages for both neurosurgeon and orthopedic surgeon and not surprisingly, I've not heard back as yet. I'm a wreck. This news is terrifying me. I have no idea what this means, will it get worse? Do I have to have surgery again and if so, my goodness, all the way down my spine? Anyone here dealing with this and have any information you can share? I'd be so grateful. Thanks so much

straydog
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Date Joined Feb 2003
Total Posts : 15152
   Posted 10/20/2017 7:42 AM (GMT -7)   
Hello MT Lady & welcome back. After reading your post I can understand your fears. I would imagine your next step will be imaging to see what all is going on in there. Not sure if your hardware is compatible for an MRI but they can do CT's. A member recently posted about having a 3D Ct that showed issues that a regular CT did not reveal.

I do know of people needing their hardware removed because of nerve issues. This happened to my husband's close friend. They did what we use to call a 360 fusion, pretty radical surgery, they go in the stomach & back. He did not do well & 15 months later they removed all of the hardware. He did much better after that.

All you can do at this point is wait to hear from the drs. I would keep calling them until someone returned my call. Perhaps consider making an appt & go in & be seen. The waiting is the hardest.

Please let us know what you find out. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

MT Lady
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Date Joined Jul 2008
Total Posts : 969
   Posted 10/23/2017 5:21 PM (GMT -7)   
Thanks so much for reading my post and responding, Susie. In the past 11 months, I've had 1 CT and 3 x-rays. The CT was done about 2 mo after surgery because the nerve pain was so severe, I couldn't lie down to sleep, had to sit up in a chair with pillows stuffed around me. Ortho surgeon ordered the CT and told me all was "good." Then, at some visits, I was seeing him about every 6 weeks, he had xrays taken and again told me "no problem at the surgery site." I've heard from some people that trying to get an opinion from another surgeon is highly unlikely. So do I trust this guy to be honest?
Fibromyalgia, Osteoarthritis, scoliosis, DDD L1/L2, L3/L4, L5/S1, sciatica, severe spinal stenosis L5/S1, severe facet joint pain syndrome, hypothyroidism.

straydog
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Date Joined Feb 2003
Total Posts : 15152
   Posted 10/24/2017 3:57 AM (GMT -7)   
MT Lady, it is not uncommon at all for people to get a 2nd opinion after having surgery. Usually, the only time another dr will not see someone is if the surgery is recent. You are far enough out that you should not have a problem getting a consult. So, if you decide this is something you may consider I would not hesitate in doing it.

The dr should have been taking xrays to monitor the progress of your fusion. It takes quite a while for a fusion to become solid, even with all the new technology used these days. A Ct will not show nerve damage. I am not sure why the dr hasn't considered an EMG study to check the nerves.

Has he talked about trying you on any of the medications used to treat nerve pain? There are several that is often used. For back related nerve pain I have seen more people have success with Lyrica than any of the others. I take a low dose of Gabapentin for a pinched nerve in my neck. But, again Lyrica is what I have seen more success with for back issues.

I read your post in the Fibro forum & you mentioned being on Flexeril for a muscle relaxer. How is that working out for you? Most complain it is too sedating & can only take it at bed time. Which means they really are not getting much benefit. I have been on a muscle relaxer called Baclofen for many years now. I take it 3 times a day on a schedule. It does not sedate me or make me groggy. It has a completely different make up compared to regular muscle relaxers and works differently. It works on the CNS, very effective for me & many others. You can look it up at Drugs.com to read about it. This may be something to consider. Same with Lyrica, look it up at Drugs.com.

It disturbs me that you are struggling so much & not much being tried to give you any relief. Surgeons are notorious about this once surgery has been done. They say the surgery went fine & therefore the patient should not be having issues. I would imagine before long you will be referred back to your referring dr, this is what typically happens. The two medications I have listed are meds your PCP can prescribe if getting seen by the surgeon is an issue.

Please keep us posted on how you are doing. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

MT Lady
Veteran Member


Date Joined Jul 2008
Total Posts : 969
   Posted 10/26/2017 7:58 PM (GMT -7)   
Once again, I very much appreciate your information. To answer your questions: The ortho surgeon, who is the one that I have been seeing over the past 11 months, did order an EMG/NCV, which was performed last week. The results showed moderate to severe nerve damage, right side, L2 to S1, and moderate to severe nerve damage, left side, L5/S1. His recommendation was to go back to the pain mngmnt dr, who I have seen over the past 6 mo or so, but all he wants to do is nerve injections, which I refused to do. I've had far too many over the past 15 - 20 years, done, done, done with injections in and around my spine. When I tried to "pin" the ortho surgeon down with questions about what is happening to my spine, he was extremely vague, would not give me a straight answer. He was NOT the surgeon I picked. I went to a neurosurgeon who recommended the ortho surgeon; they worked together on my surgery. The neurosurgeon is next to impossible to talk to let alone see. I saw him twice after surgery and have not been able to get back in to see him. Now, I have an appt in two weeks. Apparently the ortho surgeon called the neurosurgeon and whatever he told him, his office found time for him to see me. As far as meds, over the years, I have tried them all...gabapentin, Lyrica, Cymbalta, Pristique, Mobic to name a few and every one of them have caused very unpleasant side effects that I'm not willing to live with. I've been on Norco for a long time, I NEVER take more than prescribed and thank goodness, it does help my pain, doesn't make it go away, but I'm able to function. I use ice also and I'm stretching, using what I learned in PT. Thank you for the info on the muscle relaxer. I too only take 1 Flexeril at night, so I'd be interested to see if being able to take something during the day would help. I probably sound so naive...here I am, 66 years old and I really believed the surgeon when he told me he could fix this, I could have a very successful surgery. Those that have had lumbar spinal surgery, laminectomy and fusion, understand what an extremely painful surgery it is to recover from and I end up with more pain than when I went in... confused

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15152
   Posted 10/27/2017 7:05 AM (GMT -7)   
MT Lady, if you discuss the Baclofen with the dr be sure that you are started at the lowest dose. You may experience a little drowsiness in the beginning. This usually clears up in a week or two. Another thought is getting in a heated pool & walking in the water. Perhaps a YMCA or a gym has heated pools. Something to consider. At least in water you don't have to worry about injuring yourself. In the summer I am in my pool, jacuzzi in the cooler months.

I hope you can get some relief.
Susie
Moderator in Chronic Pain & Psoriasis Forums

MT Lady
Veteran Member


Date Joined Jul 2008
Total Posts : 969
   Posted 10/27/2017 7:23 AM (GMT -7)   
Actually I am able to exercise by using treadmill or elliptical. The intense pain is when sitting and lying down. So I’m grateful for that. I will keep dosing of Baclofen in mind thanks. Miriam
Fibromyalgia, Osteoarthritis, scoliosis, DDD L1/L2, L3/L4, L5/S1, sciatica, severe spinal stenosis L5/S1, severe facet joint pain syndrome, hypothyroidism.

pitmom
Veteran Member


Date Joined Jan 2015
Total Posts : 2152
   Posted 10/27/2017 9:17 AM (GMT -7)   
I haven't seen you mention any vitamin supplements. B-12 is really good for the nervous system. As we age, we absorb less of B-12 from our dietary consumption. You may want to try the ones you put under your tongue for better absorption. Hope this helps.
multiple surgeries for rotator cuff both shoulders with residual chronic impingement syndrome, ulnar nerve transposition, carpal tunnel release, multiple wrist surgeries, multiple herniated discs, tarlov cysts, whiplash, bursitis of hips, grade 5 right shoulder separation and torn labrum, ovarian cysts, fibroid tumors of the uterus

Raew64333
Regular Member


Date Joined Sep 2017
Total Posts : 33
   Posted 10/27/2017 7:50 PM (GMT -7)   
I hope you find relief soon.. Have you went to Pain Management?? I lived with chronic pain for many years suffering.. I don't know your exact condition but I suffered from Degenerative Disc Disease.. Tramadol turned out to work for me long time. When all the meds stoped working surgery was next step.. I have had 2 acdf multi level surgeries and finally pain med free!!! I had to keep pushing my doc to get these results.
Don't give up. Keep pursuing better health.
Sending up a prayer for you. Hugs

MT Lady
Veteran Member


Date Joined Jul 2008
Total Posts : 969
   Posted 10/29/2017 8:21 PM (GMT -7)   
I do take supplements, B complex, Biotin, Zinc vitamin D, Magnesium maleate (I have fibromyalgia), CoQ10, fish oil and melatonin. Yes, I've gone to pain management, who really just wants to do nerve injections. Over the course of over 20 years, I have had FAR TOO MANY and I simply refuse to do more. He's very reluctant to give pain meds. When I first saw him, he did prescribe morphine, low dose (15 mg) which along with Norco, really helped the nerve pain. I took it for about two months and got off of it. I still take Norco, my rheumatologist prescribes it for me. The nerve pain has worsened over the past couple of months but since my rheumy has prescribed Norco, the pain Dr won't see me becuase he says I violated our contract by getting opioids from another doctor. Funny thing is, both doctors are at the SAME practice so they both have access to my electronic chart and can see what I've been given. Crazy world we are living in...
Fibromyalgia, Osteoarthritis, scoliosis, DDD L1/L2, L3/L4, L5/S1, sciatica, severe spinal stenosis L5/S1, severe facet joint pain syndrome, hypothyroidism.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15152
   Posted 10/30/2017 6:40 AM (GMT -7)   
MT Lady, the Contract you signed with the PM dr stated you would not obtain pain meds from any dr. It doesn't matter that the drs were in the same group. This is standard with any PM dr.. PM drs are very strict on this.

You obviously have a pinched nerve causing the radiculopathy. I do not blame you a bit for no more injections, steroids have their own set of problems when used in excess. I went the steroid route & ended up with osteoporosis when I was in my 40's. I was on IM injections for 3 years every 6 weeks & landed in the hospital.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

kchw496
New Member


Date Joined May 2017
Total Posts : 17
   Posted 10/30/2017 7:54 AM (GMT -7)   
I have never heard of "violation of contract" by getting meds from another doctor in the same group. So crazy!

Just curious, did your doctor recommend those supplements? I find that some are very open and some are not.

Thanks!

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15152
   Posted 10/30/2017 9:26 AM (GMT -7)   
kchw, yes it is very much considered a violation. Treatment of chronic pain is very strict & getting more restrictive by the day. The war on "over prescribed opioids" has had a profound affect on chronic pain patients. Many people with a long term relationship with their PM drs have ended up with zero pain medication & without a PM dr.. These are model patients never had an issue with their dr.. The government has these drs worried about being flagged & scared of losing their license. There are shortages of PM drs in many places because they are so limited in what they can do for a patient without having someone looking over their shoulder. There is a prescription monitoring system in place, they know who is doing what, this includes the drs being monitored. I would not want to be a young person with chronic pain as they will get little help.
Susie
Moderator in Chronic Pain & Psoriasis Forums

MT Lady
Veteran Member


Date Joined Jul 2008
Total Posts : 969
   Posted 10/30/2017 7:53 PM (GMT -7)   
Well, the magnesium maleate I've been on for about 30 years. Back when I was diagnosed with fibro, there was very little information and very few docs even believed it was a condition. I was SO fortunate to have gone to a pain clinic, yes they had them back then, where the pain doc recognized I had more than a "bad back" and referred me to a rheumatologist who diagnosed me with fibro. She had a journal in her office, FM News, I think that was the name of it that I read while waiting for her and I remarked how much I learned form it and she told me to take it home. I subscribed to it and that was my fibro lifeline. From that journal, which was written for patients and doctors, I learned so much about what may and may not work. That is where I learned of some of the supplements I take. My PCP, cardiologist, and rheumatolgist are aware of the supplements I take. They've not remarked about them at all. As far as the contract, yes, I am aware that I agreed to not get opioids from any other doctor while under his care but I honestly thought I was through seeing him. I had stopped taking the 15 mg of morphine he had prescribed. I refused to do injections, so I didn't see the point in seeing him any more, so I went back to my rheumy who has been writing my Rxs for Norco for many years. Then, the nerve pain revved up again down both my legs, and I went back to the ortho surgeon, who sent me to PT and recommended I go back to pain doc and get a nerve injection so I made an appt to see him, thinking I'll try one more injection and that is when, when he walked in, he gave me hell for getting the opioids from another doctor. I didn't even bother telling him why I did, that I didn't think I'd be back. As it turned out, he refused to give the nerve injection that day, even though I had scheduled the appt specifically for the nerve injection...his PA told me when I was waiting for him in the patient room that he doesn't give nerve injections on Wed, and I was there on a Wed. Then he came in and gave me hell and I just sat there and swallowed. I made another appt for the injection, left and a few days later, canceled it. I cannot see going back to this man. He has credentials up the you know what but as far as I'm concerned, he's an ***. I know they are concerned about their licenses and I realize there is an opioid epidemic but I've been going to the same practice for 20 years and all he need do is take time to read my chart to see I've never taken more than what has been prescribed for me. But, that's the problem, they don't take the time to really get to know the patient. They see you as a way to make money for the practice...keep selling those epidural injections. I wish more people were aware how serious the side effects can be including causing adhesions which can be the cause of your nerve pain in your spine. With all the nerve damage I have in so many areas of my lumbar spine, who knows if some of it isn't from the injections? I'm sorry I'm really ranting. I'm so frustrated. I know I'm not the first person to have lumbar spinal surgery and end up with more nerve pain now than before the surgery. I was so sure this was going to work and some of that confidence was because of what the surgeons told me, how confident they were it was going to be successful. I'm sure in time I will learn to accept it all. I've suffered from depression and anxiety for a very long time, like a lot of you with chronic pain. It makes it so much more difficult to try to handle more pain. Thanks for listening/reading...I very much appreciate it xoxoxox Miriam
Fibromyalgia, Osteoarthritis, scoliosis, DDD L1/L2, L3/L4, L5/S1, sciatica, severe spinal stenosis L5/S1, severe facet joint pain syndrome, hypothyroidism.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15152
   Posted 10/31/2017 6:04 AM (GMT -7)   
Miriam, I understand everything you have stated above. Yes, you are correct the injections are a huge money maker for the drs. But, they do not tell patients the long term effects of having numerous injections done. That cuts into the bank account too much. Now, with the so called opiate crisis this is all many of them offer.

I am glad you have a compassionate rheummie to help with your care. The fact that you had a surgery that created worse problems is devastating to a person. Are you seeing a dr for your depression, I sure hope so. Depression & chronic pain go hand in hand. You are absolutely right about acceptance. It took me a long time to get there. Fortunately, I had a wonderful psychologist help me wade through those murky waters. Chronic pain was not my only issue. I have other health issues & it just became too much to deal with. With her help I made it. I had a complete change in my life & learned to let go of the old one & have a new one.

Come here & post all you want, this is what this forum is about. Just know you are not alone. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums
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