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Help for adhesive arachnoiditis

Hello,

I have been diagnosed with marked adhesive arachnoiditis of the lumbar and sacral spine via MRI recently.  However, evidence of "nerve clumping" has been noted in previous MRI as far back as 4 yrs.

My symptoms began in 2003 with low back pain, bowel & bladder problems and radiculopathy down both legs. At that point, I underwent surgery for L5/S1 fusion with lumbar decompression. Ten days later I returned to surgery because of a screw misplacement (impinged the canal).  The neurosurgeon left the incision open after this surgery and I developed a wound infection and spent the next 4 months on triple IV antibiotics.

I seemed to recover fairly well from this ordeal, but at about 6 months post-op I began to develop intense back pain again and the symptoms returned with a vengeance. I had been walking about 5 blocks daily, but the pain and numbness kept me away from the park. I was placed on narcotic pain meds which barely touched the pain and neurontin which kept me in a fog all the time.

A year post-op I sought out a new spine doc who saw more problems on MRI.  He said that the hardware used was outdated and probably not a good choice for the fusion.  I had degenerative disc disease of the entire lumbar spine and a probable non-union of the fusion. So, I underwent another HUGE spine surgery with anterior and posterior fusion of L3 through S1. This one was alot more difficult to recover from.

Again, about 6 months post-op I began to have debilitating pain, numbness down both of my legs, burning sensations followed by cold sensations from the thoracic region all the way down to my toes. I had intermittent periods of horrible nerve pain in any area.  My legs became weaker and it felt like I was walking in deep sand all the time.  So, at 10 months post op I had another MRI and a CT scan which showed breakdown of L1/L3.  My doctor thought also that the hardware may have been causing the other symptoms, so I underwent another surgery to remove the hardware and fuse L1-L3.  

I never did recover fully from that surgery.  Symptoms returned again about 6 months later.  Another MRI and CT scan SHOWED mal-union of L2/3.  My doctor was concerned and took my case along with all the X-rays to a conference on spine surgery and all 19 physicians agreed that there was definitely a mal-union that required another surgery to fix. It was also discovered that I had a curvature in the thoracic region that was putting more pressure on the recent fusions.  Actually, it was the other way around. Last summer I did undergo the surgery.  When the doc went in, he discovered everything fused solid.  He took out the latest hardware and simply closed.  When I woke from the anesthesia I was horribly depressed to hear that he did nothing to help take the pain away.  His parting explanation was that my spine would have to undergo another HUGE surgery from the neck to the sacrum to help me.  He would have to contour the spine again to take the pressure off.  I HAVE HAD IT!!!

A few months later I had another MRI where the radiologist actually documented the adhesive arachnoiditis.  When I tried to call my doctor, he never returned my call.  I began doing as much research as possible on arachnoiditis.  However, I have not been able to find much on the internet.  I have EVERY SINGLE symptom listed, some much worse than others.  Over the past several months I have come to accept that this was probably my problem to begin with and the 5 surgeries just made it worse.  Now that I know, I can almost pinpoint my first vague symptom following 2 myelograms in the 1980's.

Today I have severe pain and much difficulty walking.  I cannot walk over 20 feet without an assistive device.  I sleep poorly because of the pain.  Although my weight has increased, I don't have much of an appetite.  I am on a 50mcg Duragesic patch, 4 10/325 percocet daily, lyrica 150 mg daily and still experience tremendous nerve and back pain.  I have been to a pain doctor who told me I was not a candidate for spinal steriod injections.  I have been turned down by 3 other pain specialists because of multiple back surgeries.  I don't know where to turn to get help. So far, the ONLY thing that has been effective is deep tissue massage.

My big questions are:
1.  What kind of a physician do I need to see to take care of me?
2.  Is there anything that can be done for advanced adhesive arachnoiditis?
3.  Can you recommend anything that might help?

Thank you.
5 Responses
462061 tn?1212614815
That's a good question.  Which kind of doctor would you see?
Avatar universal
Hi there, I was just wondering if you ever forund out anything more regarding your arachnoiditis. I too have been diagnosed with arachnoiditis. I am a neurological ICU RN and work at one of the top 10 NeuroScience hospitals in the nation, so I have access to
Avatar universal
Good grief....and I thought that I had been through a lot!  My issues with arachnoiditis seem minor next to what you have experienced...and I am so sorry for your pain.  Knowing what I know now and having exhaustively researched adhesive arachnoiditis, I agree totally with your pain doctor that you are not a candidate for any kind of steroid injection.  What I would do is make an appointment with the Neurology department at the Mayo Clinic.  When you call for an appointment (no referral necessary) they will ask you to send copies of your most recent MRI and CT scans for review before they set up the appointment.  Assuming they see what you think they will, they will have you come in and see a neurologist, who will then send you to the Neurosurgery department for consultation.  Mayo Clinic is the #1 rated hospital in the nation in this area.  Do it now and see if they can provide any help for your pain.
Avatar universal
who everyone needs to see is a neurosurgeon, even though none of us is really interested in surgery or even a candidite for surgery..none the less, what we have is a nerve problem, and best managed by a nerve dr and pain management team.  there is no reason for us to have any more test, except some mri/ or ct's done to see the progress or check on nw symptoms, but other than that, unfortunatly, there is no medically nessesary reason to peform any other test or procedures.  the only to do is manage the symptoms and pain.  the only reson you would need to consult a neurologist is if a new set of symptoms appearded and you couldnt explain them from the adhesive arachnoiditis syndrome.  also your dr's may say arachnoiditis or they may say adhesive arachnoiditis..techniclly they are the same only adhesive is more advenced with clumping .and considered to be progressive and more signifficant.  BUT if you can find a dr that knows the difference than you should stick with them ..because most do not understand the dfference between the 2..also radiologist are not allowed to diagnose you becaus they dont have acess to your medical records or full list of symptoms and other test..there for they have a FAR MORE STRICT set of rules in making a diagnosis.  so let me explain it this way..you CAN have arach. and the radiologist not mention it, cause they aren't allowed by law to ..on the same test your Dr can diagnosis arach on you...also (seperate test  lets say)  if the radiologist mentions arach then your Dr must inform you and..thus th eexplaination of what would explain your symptoms..I hope thi helps every one..i would also like to invite everyone to facebook..our support group is life with arachnoiditis...come join us!!!
Avatar universal
after 3 myleograms in the 80's, the pain level went thru the roof.I went totally bald,low-grade fever,low BP,anorexia,hives . The list goes on and on. I have been treated with every thing from disbelief to CONTEMPT. I;ve been labeled a drug addict or hypochondriac. I have been been misdiagnoised and given a multitude of spinal injections,dorsal column stimulator and intrathecal infusion pump. Doctors are hesitant to admit to adhesive arachnoiditis even when it jumps out at them from MRI's,CT;s and nerve-conduction studies BECAUSE THEY CREATED IT! Every procedure performed added to it. They just can;t resist the 3000 to 6000 dollar fee for each PROCEDURE.The oath they took is forgotten with the # of digits on the bill. They blame the DEA to keep from writing anything that may give the patient relief. Forget about any quality of life. That went out the door when the word arachnoiditis shouted from the MRI. Yes, I am crazy! Antidepresants DO NOT releive the horrible pain from this DR.-created monster that has turn me in something less than human. I would not wish this on my worse enemy but I do wish that every Dr. that labeled me had to feel what I feel for ONE week. Most would commit suicide before the week was up. May God have mercy on their souls.
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