Desperate for help after L5/S1 FUSION

[cudacat08]

Jan 2007 Excrutiating pain after a few years of suffering a lower back pain,kept being told nothing wrong
After 5 months and in so much pain i paid for a private consultation,that ordered mri's and xray done,which showed up severe DDD at L5/S1 & synovitis NHS for lumbar fusion Sept 2007.
Fusion 19th sept,no xrays used during surgery,just fluorescope.
discharged after delay checking xrays,all ok for 3-4 weeks,since have gotten worse with the pain in my right lower side of back,which radiates both sides some urinary incontinence,reoccurrance of freezing feet with bluish discolouration,nausea,uncontrolled sweating,numbness in parts of lower legs that varies day by day.
Doctor has sent a letter to my NS twice explaining how concerned he is,and i was sent for MRI,NS said all was fine,but report said they couldnt exclude another disc protrusion,no mention of hardware
A month ago i sent and paid for all my medical records from the hospital i had my op at,as i am so desperate with the pain,the xray 1 day post op seems to show that the right L5 screw enters the corner(or not) of the vertebrae,and then exits the top of the L5 vertebrae into the healthy disc space aboveat an exteme angle,IS THIS CORRECT?
I am desperate to get an answer,my doctor sent me for an xray last week and asked the radiographer if there was a misplaced screw and he wouldnt comment,i just need an answer.
Im only 35,and have now to rely on a wheelchair,as i can only walk a very short distance.

Is this screw misplaced? i was fine at first after my op,then i started physio,and pain has been getting worse,and other symptoms ever since.
Please help

[cudacat08]

Hi,
Thankyou again,

I have made a copy of all my scans and xrays and they have now been sent to a neurosurgeon in London for a second opinion,fingers crossed for me till i get the report.
big hugs

[kittyluv1]

Is that the normal followup for spinal surgery in the NHS?  It sounds as if your recovery could be delayed without proper evaluation and treatment of new symptoms that occur.
I'm sorry that you are having such difficulty ---
I had my cervical fusion done six months ago (excellent results), but I was seen at regular intervals of no longer than six weeks to assess my progress and obtain postop x-rays.

You started physiotherapy much earlier than I -- didn't begin until nearly 8 wks postop.
If there are problems with the hardware, your doctor should be investigating the situation until a complete assessment is made.  I know it is difficult to keep calling, but they may just respond more quickly with frequent requests.  If not from your original surgeon, is it possible to obtain a second opinion from someone not currently involved in your case?

[cudacat08]

Forgot to mention to you that i saw my surgeon the night of my operation,
then had to phone every week to try and get a follow up to see him.
I finally saw him 10 months after my operation,and had had no aftercare at all during that period,just physio starting 2 weeks after that just made everything worse.
During any recent mri's,and xrays,i have only ever seen him once since my operation.
When i did see him the once because of the extensive back spasm i was suffering he prescribed me diazapam,and gabapentin,and said he'd see me for a follow up in 6 to 8 weeks,and that is now 12months ago!
As you can imagine,im so down with it all
Thankyou for bringing me a smile

[cudacat08]

Thankyou so much for all your kind words,every one on here is such a great source of strength to me at the moment.
The problem with the xrays is that i had 1 taken 1 day post op,which my neurosurgeon never saw because he wasnt in the hospital that day,in my medical records it says that it was done,but the page is completely blank with no illustation as to hardware,no comments at all to go off.
The next xray i had was at my doctors request 2 weeks ago,after i received a copy of those original xrays.
The xrays were requested not asking about the fusion,but specifically about whether the hardware was all in the correct position or not.
The radiologist would not answer the question,and when my doctor called him,he wouldnt commit either was for fear of repercussions.
Its so difficult because that is the last thing im thinking of,im just trying to get an answer to this question.
It all just seems to be so much harder the longer the pain goes on,and im running out of steam fast,just so worn out with it all.you guys keep me smiling though,thanks so much for all your support,
youre a star

[kittyluv1]

I am sorry to hear of your prolonged discomfort and the onset of such disabling symptoms following your lumbar fusion.
The probability of additional degenerative changes in adjacent vertebral levels of the lumbar spine is one potential source of your pain/sensory changes.  The addition of urinary incontinence and difficulty with ambulation are suggestive of more involvement with the spinal cord as well as the spinal nerve roots. If your recent MRI was "fine" and no new problems are noted at adjacent vertebral levels, then the focus would be on any potential hardware failure or screw displacement.
The difficulty with looking at x-rays without a trained eye is that what appears misplaced may not be as it seems.  If the radiologist who interpreted the films documented on his report that the screw appears to be loose or incorrectly placed, the surgeon would hopefully have addressed this situation during your immediate postop recovery,
Hardware failure can occur during later stages of recovery (including the two years since your surgery), but is usually visualized on the MRI or other imaging studies needed to provide clarity.
If your medical records include the radiologist report, see if there is any mention of screw alignment.  Subsequent x-ray exams taken to assess the status of your fusion should also make any notation of any hardware problems.
Thankfully your doctor is pursuing further investigation and is making efforts to obtain confirmation of any interval changes to adjacent vertebrae or any possible hardware failure.  
I am not familiar with the process of NHS, but can understand your frustration and concern regarding any further delay in obtaining appropriate intervention to address your increasing neuropathy/myelopathy.
I hope that your condition is assessed appropriately and that you are provided the medical treatment you need.
Best wishes and keep us posted on your progress ----