[Misc] Help please - Spinal Stenosis

[marlowe]

Sorry to hear about your problems. I was born with an inherited degenerative neurological condition but fortunately remain not too adversely affected at the moment. The same cannot be said for my daughter who inherited the condition off me and led her to develop severe scoliosis by the of age 14 which required corrective spinal surgery which was very successful.

Her surgeon's name was Jonathan Lucas who's a specialist spinal surgeon and I would certainly recommend him....although I have just read that the best surgeon to operate on spinal stenosis is a neuro-surgeon.

As you probably already know there are various treatment options for spinal stenosis including minimally invasive surgery, stem cell therapy and also an implant called vertiflex superior which relieves pressure on the nerves.

As for pain management have you considered acupuncture?

There is also the drug gabapentin which they use specifically for nerve pain which my daughter was on for a while.

 

[Surf's Up]

Yes, I've had spinal stenosis. I had a 4 hour operation to relieve the pressure of my vertebrae compressing my spinal column in 2011 at Guys Hospital. This consisted of the surgeon going behind the offending vertebrae and carefully shaving off the spinal column side of the vertebrae to reduce its size and thus the pressure on my spinal column. Suffice it to say it was a fairly precarious procedure, one slip and I could've ended up in a wheelchair, but the surgeon was great and to date I've managed to live a reasonably normal and active life following the surgery. This particular procedure is called a Partial Laminectomy and surgery is normally only undertaken as a last resort when all other approaches (pain killers, physiotherapy, etc) have failed. Also the procedure can be performed by surgeons from two specialist fields - Neurology or Orthopaedics. My surgeon was a Neurosurgeon specialising in backs so he had performed this operation many times

 

[Surf's Up]

 

[Zeberdi]

Thank you for your replies - @Surf's Up and @marlowe and @BLOCK F for your advice and shared experience- there’s some really helpful information in your posts. @Change at Barnham thank you again for earlier

I‘m waiting for second opinion from a neurologist /neurosurgeon - at the moment the protocol seems to be try steroid injections first - but that is not curative and pain is there for a reason to safeguard against further damage to the nerves - with my liver problems and kidney disease, steroids that might not be an option anyway especially as I am already on a ridiculous amount of medication including immunosuppressants and SSIs - my blood pressure gets dangerously high on steroids too.

Gabapentin I had years ago for the complex regional pain syndrome - it gave me the most severe migraine but will discuss all options.

Anyway - apologies for the wobble earlier.

 

[marlowe]

You might find this forum useful where people share their experiences of spinal stenosis..

spinal stenosis

Get answers and support from others like you

www.patientslikeme.com

 

[Zeberdi]

You might find this forum useful where people share their experiences of spinal stenosis..

spinal stenosis

Get answers and support from others like you

www.patientslikeme.com

I’m not big on group sharing tbh - I tried that with the Cancer forum a few years ago and it all got very depressing as people’s lives just seemed to revolve around their illness - my thing is to push through with work, visiting family, going to football etc despite it all and compartmentalise it so it doesn’t rule my life - I need the distractions to keep me sane!

I have found NSC very helpful though despite the paucity of people who have posted similar experiences on this thread. So I decided to follow advice from one poster and get a consultation with a neurosurgeon which GP was happy to refer me to. Unfortunately I also need a lung biopsy too at the moment which the Respiratory consultant at Addenbrookes informed me by phone on Thursday as my last lung CT showed ’abnormalities’ - also I was hospitalised last week with an unexplained rash and breathing issues so clearly they are concerned but they may not be able to do a biopsy without the go-ahead from a neurosurgeon to say it would be safe because of the stenosis

 

[maresfield seagull]

The steroid injection s may help reduce the inflammation in the nerves Which maybe highly agitated due to being compressed If you are in constant pain It might just let them settle down enough to get some relief
Without masking the pain like some opiates might ?
Everybody's body is different though
And I don't know how severe your situation is

 

[loz]

I was struggling standing and walking for a couple of years and was blaming a hip I had replaced 3x after the first 2 operations went wrong. I was bent over my foot was going numb with pain and I had to rest every 50 yards, I was 58!,

I could no longer stand the pain so went back to the hip doctor he said the hips fine and sent me to have a scan, they found I had spinal stenosis, I had a couple of steroid injections and the first one worked but not the second so I went for a spinal fusion.

Best thing I ever had I am like a new person and can’t believe I put up with the pain for about 4 years before seeing anyone. Bellow a before and after.

 

[Zeberdi]

The steroid injection s may help reduce the inflammation in the nerves Which maybe highly agitated due to being compressed If you are in constant pain It might just let them settle down enough to get some relief
Without masking the pain like some opiates might ?
Everybody's body is different though
And I don't know how severe your situation is

They won’t settle down unfortunately as they are constantly freshly irritated by bumpy movement, weight carrying (even a small bag) and cervical instability which happens everytime I turn my head. This effects my balance, causes blurry vision, migraines, breathlessness, constant painful pins and needles, neuropathic itching, carpel tunnel pain, loss of dexterity and trapped nerves in my shoulders.

I am already on Methotrexate for another condition which reduces imflammation.

It has become ‘severe’ in that it has been progressing for 10 years with various medications and neck collars not working. It has got to the point where I am getting quite severe side symptoms now and myelopathy.

I’m not one to fuss or get overly anxious about my health - lived with severe widespread pain and debilitating fatigue since the 1980s and rarely spoke about it). I think any surgical intervention will be a last resort but one that might be necessary now - I will see what the neurosurgeon says.

I was struggling standing and walking for a couple of years and was blaming a hip I had replaced 3x after the first 2 operations went wrong. I was bent over my foot was going numb with pain and I had to rest every 50 yards, I was 58!,

I could no longer stand the pain so went back to the hip doctor he said the hips fine and sent me to have a scan, they found I had spinal stenosis, I had a couple of steroid injections and the first one worked but not the second so I went for a spinal fusion.

Best thing I ever had I am like a new person and can’t believe I put up with the pain for about 4 years before seeing anyone. Bellow a before and after.

Tbh your type of story is why I recently pushed to see a neurologist and requested a scan. If there could be a life without so much pain, it would be a life changer!

 

[BLOCK F]

I was struggling standing and walking for a couple of years and was blaming a hip I had replaced 3x after the first 2 operations went wrong. I was bent over my foot was going numb with pain and I had to rest every 50 yards, I was 58!,

I could no longer stand the pain so went back to the hip doctor he said the hips fine and sent me to have a scan, they found I had spinal stenosis, I had a couple of steroid injections and the first one worked but not the second so I went for a spinal fusion.

Best thing I ever had I am like a new person and can’t believe I put up with the pain for about 4 years before seeing anyone. Bellow a before and after.

I am pleased for you. It is a horrible condition.
As I posted earlier, neither the jabs nor the spinal release and co-flex stabilisation op have helped me.

 

[BLOCK F]

They won’t settle down unfortunately as they are constantly freshly irritated by bumpy movement, weight carrying (even a small bag) and cervical instability which happens everytime I turn my head. This effects my balance, causes blurry vision, migraines, breathlessness, constant painful pins and needles, neuropathic itching, carpel tunnel pain, loss of dexterity and trapped nerves in my shoulders.

I am already on Methotrexate for another condition which reduces imflammation.

It has become ‘severe’ in that it has been progressing for 10 years with various medications and neck collars not working. It has got to the point where I am getting quite severe side symptoms now and myelopathy.

I’m not one to fuss or get overly anxious about my health - lived with severe widespread pain and debilitating fatigue since the 1980s and rarely spoke about it). I think any surgical intervention will be a last resort but one that might be necessary now - I will see what the neurosurgeon says.

Tbh your type of story is why I recently pushed to see a neurologist and requested a scan. If there could be a life without so much pain, it would be a life changer!

Good luck with whatever treatment you go with Zeb. I hope it works better than my Spinal Stenosis treatments.

 

[Zeberdi]

I am pleased for you. It is a horrible condition.
As I posted earlier, neither the jabs nor the spinal release and co-flex stabilisation op have helped me.

How did your trip go btw - did you manage the journey in the end?

 

[BLOCK F]

How did your trip go btw - did you manage the journey in the end?

It isn’t happening until August and is my son’s wedding. We will be taking your good advice and get the Thameslink train from Brighton to St. Pancras and then on to Kings Cross for the Newcastle train. Luckily, my sister lives in Brighton and we will stay with her the night before.