i have hypermobility ehlers danlos syndrome (basicially too much collegan). As a result I have various illnesses and severe degenerative disc disease. I have had four failed disectomies over the course of the last six years on L5/S1 and in January I am having a PLIF spinal fusion on L4/5 and L5/S1. Am interested to hear from anyone experiencing similiar
I'm new and am having PLIF Spinal Fusion on 2... - Pain Concern
I'm not sure I'd do this. Your spine may still move at the ligaments, facet joints, the neck or the thoracic area I have DDD three slipped discs and EDS. My understanding is that fusion doesn't help EDS folk. Have you had an opinion from a rheumatologist that specialises in EDS and has cervical cranial instability and Chiari syndrome/tethered cord been ruled out first with a dynamic upright MRI. I wouldn't contemplate surgery until I'd had this checked out whatever your neurosurgeon tells you.
Hi Megan 75, last year my rheumatologist (specialising in EDS) advised against the fusion but agreed to try the fourth disectomy due to extreme uncontrolled pain after me losing power in my legs and fallen down stairs . This surgery did not work in fact it made matters much worse. I no longer can walk without the use of a rollator am house bound almost 24/7. I have nerve damage on my left side which results in very little power in my left leg on waking and none by nightfall. I have done quite a lot of research into neurosurgeons familiar with HEDS. Of course I have been given no guarantees, it's a gamble but at the moment things are continusing to dis improve. After my experiences of the past 10 years I now feel as if I am in better hands. The neurosurgeon carrying out the fusion surgery is not the same guy who performed the 4 disectomies, I have bade farewell to him some months ago.
Megan thank you so much for your concerns, it's so refreshing to talk to someone who understands the issues. My physiotherapists has devised a strict regime to build up those most important muscles prior to surgery, hydrotherapy etc and I am working so hard to achieve this.
Gentle, gentle hugs sent your way
I was told my nerve damage on my left side and constant sciatica was to do with my degenerated/slipped discs. I didn't accept this and had a nerve conduction study which indicated piriformis syndrome, also my SI joint/hip traps the nerve when I sit.
I had a steroid injection into my piriformis, and they also discovered I had bursitis in both hips. I had 7 months of physiotherapy to strengthen my weakened muscles and now do 2 sessions of hydrotherapy a week and still do my physio exercises every day.
The nerve pain was the worst pain I have ever experienced. I now take duloxetine for this and it puts it firmly in the background. I never thought I would recover from this but I have. I still have pain and stiffness but nothing like as bad as before.
There is light at the end of the tunnel xx
I am so glad to hear you are getting some relief. Yes I have had the nerve conduction tests carried out and my peritoneal nerve was severed ??????????? during surgery. Latest MRI shows other nerves glued as a result of leak of spinal fluid during last surgery. As part of fusion the surgeon is going to attempt to free up these nerves which would result in less discomfort for me.
I have been on lyrica, nortripilline, OxyContin, oxynorm and others all to no avail. At least the severing of the nerve during the last surgery took away that horrendous pain which there are no words to describe. Now I am on buTrans 20mg patches for pain and take a high potency Cur-cumin (Tumeric ) for inflammation as anti inflammatory interferes with my blood pressure.
Believe you me Megan myself, my physiotherapist and my GP have exhausted every avenue and as it is my decision in the end of the day as they all tell me as of now I have decided to go ahead with the surgery. I still have two months during which I will continue to do research. I am terrified of course I am, I would not be human if I was not. But I have been housebound for 15 months now. I cannot walk for more than 5 minutes now, can't drive, can't sit at all and can't lie comfortably and am willing to take the chance to get my life back.
Megan really appreciate being able to communicate all this to you knowing you have an understanding of the complications HEDS brings with it.
Some years ago I had both my knees replaced and last year my trapezial joint in my left thumb replaced. I recovered from these it was difficult and slow but they are better than they were. I have developed wet macular degeneration disease in my left eye ( theses all can develop with HEDS as you know) as a result of which my eyesight is deteriorating, for this it's necessary to have injections in my eyeball every 6 weeks. These I find difficult because as you know when you have EDS you can have issues with local anaesthetic not been as effective as they could be.
All of this I mention Megan to let you know I am used to taken an extremely active part in my own health and treatment. I am really touched for your concern as to whether I have exhausted every other avenue opened to me but as of now I think I have but as I say I still have 2 months and who knows what may come up
I really hope they can free up your nerves. Are you sure you don't have Chiari syndrome or tethered cord/ occult tethered cord though? This can only be seen on an upright MRI.
Your symptoms are so similar to mine (sciatic nerve was trapped in my case) and I tried all the above meds and nothing worked apart from duloxetine. I'd lost power in my legs too but got this back through intensive physio.
Are you in the states? There are experts on Chiari there and a procedure you can have which we can't have in the UK.
Just concerned for a fellow zebra xx
I am in Ireland Megan we don't even have upright MRI machines. I am with physiotherapist (in Belfast) on next Tuesday and with neurosurgeon on the 21st and I most certainly will be talking to both of them about CHIARI Syndrome and tethered cord and will start my own research also and see what similarities come up, as I said I have 2 months.
Thanks a million for your concern, support and suggestions Megan will let you know how I am get on with research
Megan looked into CHIARI Syndrome over the past 14 years I have had a number of brain angio's and MRI's ( had untreatable brain aneurysm) surely CHIARI would have shown up before now. Tethered cord certainly looks interesting have almost all those symptoms.
Keep smiling zebra
Hi interesting reading your post. I have had Disectomy just 2 & Half months ago. L4/5. I have had 25 years of Back Problems. Unfortunately after week 6, I have Constant Sciatica Symptoms in Left Leg & Foot. Had MRI last week. May need further Surgery!! Not heard of Plif Spinal Fusion. Reading through your post that a Neurosurgeon performed your previous Operations? So wish You Well With All You are Facing!! If you wish to message would be interested to discuss more.
All the Best To You... XXX
So sorry to hear you are starting to experience symptoms again. Are you under the care of a good physiotherapist as strengthening your core as well as pacing yourself can go a long way to feeling more comfortable. What about pain management, what have you tried in this area?
I was only diagnosed with HEDS last year when I discovered that performing discectomies on an already hyper mobile spine just creates more space for that spine which has resulted in my need for the fusion.
Thank you for your wishes
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