Nerve Damage S1/L5

jsewell · #1 (**permalink**) 12-28-2012, 11:40 PM

I have always had cold feet as long as i can remember. I have had some significant spine surgery in the last 5 years and am pretty much fused except for the upper cervical levels and the lowest lumbar level. It has been painful at times. Related to the issue of nerve problems in the lumbar area effecting the legs and lower back, i had surgery in Aug 2012 to repair 2 fractures as well as fuse L4-5. Well i woke up from that one in so much pain, i can't even explain it. I could NOT put any weight on my right leg and little on my left leg. Pain even when not weight bearing. I went home from the hospital after a week and came home able to do nothing except get to the toilet (with lots of pain) and get back to bed. Every 4 days i would suffer the trip upstairs to the shower. It was horrible. I had to wait for my insurance co to approve the surgery to go backwards and reverse what had been done. It was approved quickly as an emergency basis, then i had to wait for my doc to have a free moment on his schedule. Unfortunatley the whole waiting period was 5 weeks.
I felt pretty darn good after the surgery, the weakness of the legs was still there, but no pain , except surgical pain and the back pain was back. It is a long road to regain as much spine health as possible. It sucks!! I used to be a mountain trail runner 4 years ago. Then reduced to hiker and now i dont even go for a walk. The leg pain has come back in the opposite leg that caused the most problem, i have had epidural injections that have helped things, but this must be an ongoing process.
sorry this has been such a long long post.
Oh my ct after the first surgery while i was in excrutiating pain showed nothing abnormal. A few weeks before the second surgery it showed that the screws were pulling out.
so just wanted to share and maybe give someone some insight. Any questions feel free to ask.
Everyone get better!!!
judy

housemd89 · #2 (**permalink**) 01-07-2013, 12:38 AM

Quote:

Originally Posted by jsewell

I have always had cold feet as long as i can remember. I have had some significant spine surgery in the last 5 years and am pretty much fused except for the upper cervical levels and the lowest lumbar level. It has been painful at times. Related to the issue of nerve problems in the lumbar area effecting the legs and lower back, i had surgery in Aug 2012 to repair 2 fractures as well as fuse L4-5. Well i woke up from that one in so much pain, i can't even explain it. I could NOT put any weight on my right leg and little on my left leg. Pain even when not weight bearing. I went home from the hospital after a week and came home able to do nothing except get to the toilet (with lots of pain) and get back to bed. Every 4 days i would suffer the trip upstairs to the shower. It was horrible. I had to wait for my insurance co to approve the surgery to go backwards and reverse what had been done. It was approved quickly as an emergency basis, then i had to wait for my doc to have a free moment on his schedule. Unfortunatley the whole waiting period was 5 weeks.
I felt pretty darn good after the surgery, the weakness of the legs was still there, but no pain , except surgical pain and the back pain was back. It is a long road to regain as much spine health as possible. It sucks!! I used to be a mountain trail runner 4 years ago. Then reduced to hiker and now i dont even go for a walk. The leg pain has come back in the opposite leg that caused the most problem, i have had epidural injections that have helped things, but this must be an ongoing process.
sorry this has been such a long long post.
Oh my ct after the first surgery while i was in excrutiating pain showed nothing abnormal. A few weeks before the second surgery it showed that the screws were pulling out.
so just wanted to share and maybe give someone some insight. Any questions feel free to ask.
Everyone get better!!!
judy

Thanks for the reply, that sounds a hard journey you've been through, hopefully you get better soon.

My cold feet are weird as I don't feel them cold but when i touch them they are always freezing, is yours the same? I notice in your sig you had hammertoe correction and was curious how did it start? My toes are always cramping up and bending in weird ways and it's very hard to get them back to normal and every i'm praying they don't stick like that. What caused your spine problems?

I'm just furious that i've had this since last April and not had one diagnostic test.

jsewell · #3 (**permalink**) 01-07-2013, 04:33 AM

I have no idea how the hammertoes formed. They are on both feet well i had the 4 toes operated on in the left side. Yesterday i walked into a door and broke at least one of them, it is so bruised and not quite in the same position it should be.
As far as what started all the spine problems, I wish i really knew. One thing i have is hypopituitarism. So my pituatary which is the master gland is not performing well. The hormones are very powerful things and when replacing it is very difficult to get the adjustments that Mother Nature is so good at. One of the functions of growth hormone after you have finished growing is to maintain bone density or help a lot in the process. So far i have not been able to convince my insurance co that i need the replacement treatment because it is expennsive. So therefore i have got a lot of spine fractures . Also my neck broke in a very strange way. It was very technically difficult surgery to perform and not done very much at all. I only found one case in the UK from a while ago. One surgery throws everything else out of alignment and i did start off with scoliosis too. I will also need to go on some bone density meds when my most recent fusions have healed to a certain level.

I sure hope you can get some diagnostics going on . It must be so frustrating. When i lived in Georgia with an HMO my doc said no one would ever touch my back , it he could only see my incision down from my neck to my butt. They sure did nothiing in the east coast but push anit inflammatories which proceeded to ruin my stomach. I really am a mess!!
again good luck
judy

housemd89 · #4 (**permalink**) 01-09-2013, 05:02 AM

Just curious to any UK members, I have priced an MRI privately and they said I need a referral from ym doctor or I could see a consultant privately then see what he thinks. Any one know what's the best idea? Just get the scan?

housemd89 · #5 (**permalink**) 01-16-2013, 03:59 PM

Ok some help needed please. I'm just back from seeing a senior physio who said i have hyper mobility and altered neurodynamics and a very bad core. She said it will be a long road back to recovery but still thinks i don't need a scan as "you only need a scan if you are getting surgery". Again i replied with surely you scan to see if you need surgery not the other way about (it's all about money saving). So I told her i'm going private and getting a refferal from my GP on Friday. She then tried to persuade me not to and said "a scan could show i have a prolapsed disc when i have no symptoms". So not sure what that's about but this is almost 10 months i have been suffering and i've had enough.

Anyway sorry for the rant and back on topic has anyone had similar problems like hyper mobility and altered neuro dynamics?

mmglobal · #6 (**permalink**) 01-19-2013, 06:37 PM

Your physio deals with the failures and is trying to keep you from being one. Great outcomes spend little time with him. I appreciate the sentiment that spine surgeons may be too quick to act upon pathology observed in the imaging, but that does not mean that the imaging will not be useful. It is not the be-all, end-all decider. Not doing a scan because it may lead to surgery is absurd. It is only another one of many tools that will be used to help you make a more informed decision about your treatment.

Having said all that... spine surgery sucks and should be avoided if possible. My little rant above is very useful info... but if you find yourself with failed back surgery, it will seem like very bad advice.

Mark

housemd89 · #7 (**permalink**) 01-22-2013, 01:47 AM

Quote:

Originally Posted by mmglobal

Your physio deals with the failures and is trying to keep you from being one. Great outcomes spend little time with him. I appreciate the sentiment that spine surgeons may be too quick to act upon pathology observed in the imaging, but that does not mean that the imaging will not be useful. It is not the be-all, end-all decider. Not doing a scan because it may lead to surgery is absurd. It is only another one of many tools that will be used to help you make a more informed decision about your treatment.

Having said all that... spine surgery sucks and should be avoided if possible. My little rant above is very useful info... but if you find yourself with failed back surgery, it will seem like very bad advice.

Mark

Yeah I tried to explain to her surgery is the last thing I want, it's typical NHS wanting to save money. I think going to go private gave them the kick they needed and they phoned to tell me I am getting a scan, good news at last. They seem to think I may have Ehlers Danlos Syndrome, the hypermobility type. I have read online this can cause scollosis and herniated discs.