Degenrative disk disease and severe nerve damage

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.

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.

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.

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.

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...

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!

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

Reading your post, I just had to reply. I have not been logged on in a while. Reading your post was as if I was writing it myself. I too had back surgeries and now severe with severe, severe nerve damage. I never had nerve damage until I had the back surgery. In fact my leg nerve damage began immediately 2 months after having the surgery. I was told that I needed a revision surgery that I had 4 months after the surgery, but it did nothing but get worse by the months. I have tried every pain medication, epidural shots, rehab, you name it, I had it. In fact, I am still fighting a workers compensation case 10 years now. Exactly. I suffer with anxiety and depression because my quality of life is so low and I am not a lay in the bed type of person. I enjoy being active and living a life, but due to what the doctors had done to my body, I have to now have thoughts in my head about wanting to live to see the next day or not. I have hardware left in my body that I want out. I had pain pumps, spinal cord stimulator, I have been on almost every pain medication, but it does not help with burning nerves that feel as if someone is pouring hot burning oil onto your lower extremities 24/7. I wish there was some type of class action lawsuit that we can file. I was told by my surgeon in 2009 that if I had the back surgery that I would be better. Yeah, really? but guess what, I have to pop pills first thing every morning just to get my day going. I even had rhizotomy recently with the promise that I would have some months of relief. But guess what. My research was correct. When the nerves grow back, it hurts even worse. You try to find some relief, and would almost try anything, because you get almost desperate, and know really seem to understand because they look at you from the outside, but they have no real idea what hell your body is experiencing. I hope that you find relief in the name of God.

Delynn Turner
Laminectomy fusion L4-L5 2009, revision 2009,
Revision fusion, 2012
Spinal Cord stimulator
on several pain medications, sleep medications, anxiety and depression

Post Edited (Lynnzack) : 3/7/2018 11:50:12 AM (GMT-7)