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 He said that the hardware used was outdated and probably not a good choice for the fusion.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?