Nerve Damage S1/L5

[Griffen]

Once you know what is going on & learn to adapt it is nowhere near so worrying.There are good days & not so good days but you kind of get use to it.

My advice would be to make an appointment to see a private consultant. Then, if an MRI etc is needed, ask if you could have that as an NHS patient. If nothing else you may be seen & get a scan quicker.

If you go down that route write up a kind of "victim impact statement" making a list of all your symptoms,how it is affecting your life,treatments to date & any questions you have. Dress up smartly & take it with you so that you can make sure you don't forget anything.I found you get better results if you are fairly business like about the whole thing. Strange but true.

[housemd89]

Originally Posted by Griffen

Once you know what is going on & learn to adapt it is nowhere near so worrying.There are good days & not so good days but you kind of get use to it.

My advice would be to make an appointment to see a private consultant. Then, if an MRI etc is needed, ask if you could have that as an NHS patient. If nothing else you may be seen & get a scan quicker.

If you go down that route write up a kind of "victim impact statement" making a list of all your symptoms,how it is affecting your life,treatments to date & any questions you have. Dress up smartly & take it with you so that you can make sure you don't forget anything.I found you get better results if you are fairly business like about the whole thing. Strange but true.

Thanks alot for that. Just curious, were you're feet always cold as well?

[Griffen]

I didn't suffer from cold feet.Instead, pain along the arch of the foot,aching ankle/ankles,sore knees & feeling as tho my legs were being slapped with really awful stinging nettles,crawling sensations, aching pains in the buttocks & sore lower back. Sometimes it only affected one leg sometimes both. I also found it was difficult to walk sometimes because I lost power to the legs.

The thing I have learnt is that pain sensations are only error messages issued at random & depend on the degree of nerve pinch.In my case any inflammation will pinch the nerves more & cause the "heavy leg" feeling.

[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

[housemd89]

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]

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]

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?