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Thu, Jan 23 10:49am · Arachnoiditis: Trying to find a specialist in Spine Health

I ended up with cauda equina syndrome and arachnoiditis after a botched L5-S1 laminectomy. On top of all the severe nerve pain, and lower extremity weakness and atrophy, I had to endure so much unethical and biased behavior from the medical field in East TN. The surgeon said I did not have cauda equina syndrome and it took seven years for me to find a neurosurgeon in NC that would diagnose the conditions in, however, I still do not have a pain management doctor that understands enough about the problems to help me. He prescribes high doses of opioids, which are not helping. Most of my pain is in the rectal area due to the surgeon putting a screw in the sacral nerve root. Did you ever find a doctor to help you?

Thu, Jan 23 10:49am · Arachnoiditis: Trying to find a specialist in Spine Health

Thank you. My father had shingles when he was in his fifties, and although he was a healthy strong man, he suffered for quite some time with the pain. I think shingles got him down more than anything, except for terrible arthritis in his hands and back, and then of course asbestos lung cancer that took him from us. I’m glad that your GP prescribed pain medication for you, but if the laws in your state prevent him from prescribing the amount you need, is there a decent pain management doctor near you, or do you hate going to them as much as I do? (Drug test each month is so demeaning). Hopefully the blood work will show a treatable form of arthritis and, if your GP can’t help, you can see a good rheumatologist. I also try to do stretches and some of the exercises I learned in physiotherapy that can be done lying down with a big ball under my legs. I have been having terrible muscle cramps in my legs, also, and I resort to using biofreeze cream because of the cool sensation, but it doesn’t help. I don’t know if muscle relaxers would help or not, but I think my cramps are due to a lack of use. This is upsetting, and it motivates me to try and keep moving around a little more, but the reason I have the problem in the first place is because lower extremity movement exacerbates the anal nerve injury pain that I have. I can totally understand your frustration, but don’t give up. I will keep you in my thoughts and prayers.

Thu, Jan 23 10:49am · Arachnoiditis: Trying to find a specialist in Spine Health

Thank you for this post. Your experience with arachnoiditis sounds a lot like mine. I also got it and cauda equina syndrome after a spine surgery seven years ago. I have an upcoming appt. at Cleveland Clinic in pain management. I had a Prometra pain pump put in several months ago in Chattanooga TN. So far I see no improvement whatsoever in my pain. My appt. is not with Dr Bolash at Cleveland Clinic, but they said the doctor I am seeing is one of their top doctors for arachnoiditis. I hope so because I also have severe pain every waking hour and it has gotten to the point that I get little sleep and am barely able to shower and dress. I did not ask a doctor to refer me. I hope this won’t make a difference in the care I receive. I have never seen a pain mgmt. doctor at Cleveland Clinic before, but I wasn’t impressed with the spine doctor or the neurologist I saw there several years ago.

Thu, Jan 23 10:49am · Arachnoiditis: Trying to find a specialist in Spine Health

I am so very sorry to hear about your problems. I have been declining, as well, for the past five years. My problems did not begin with arachnoiditis, though. I had a cervical spine surgery that resulted in spinal sensitization, in 2003. That was nothing, however, to compare with the pain, weakness, and lower extremity atrophy that I have faced after a surgeon put a screw in my sacral nerve roots leading to cauda equina syndrome and arachnoiditis. Each day is a struggle for me and my spouse, as it is for you and your spouse. My heart aches for you, and I am in disbelief of how the evil doctor refused to change the radiology report after the other two doctors sent a letter stating that they saw arachnoiditis. If anyone deserves disability it is someone with arachnoiditis. I wish I lived near you. I would come and we could come up with a plan to make the radiologist's life a living hell like ours.

Thu, Jan 23 10:49am · Arachnoiditis: Trying to find a specialist in Spine Health

What people like us have been through no one should have to go endure. My medication was once changed by a pain clinic from oxycodone to fentanyl patches. They gave me a saliva test the next month, instead of a urine test. I could see that something was going on, because the lady that gave the test acted abnormally happy. I had already seen enough out of this place that I knew this wasn't a good sign, but I always used the patches correctly and never took anything I wasn't supposed too. They waited almost a month to call and say the test showed no fentanyl. I think the entire situation happened because I had received a ganglion impar injection and it caused worse pain. I don't know if they thought I was trying to attempt legal action, which was ridiculous, but they had already made it clear that they did not like me coming there because I had so many problems, however, my diagnosis from this doctor was chronic back pain, if you can believe. I suppose after the injection they decided they would find a way to get rid of me. I was barely able to get around and when I first went there the surgeon would not operate on me for moderate to severe stenosis, because of my "previous surgeries". He sent me to the interventional pain mgmt. doctor at the facility, who ordered a CT myelogram that showed nerve root clumping. The radiologist didn't call it CES or AA and no one else had told me I had these conditions, so I didn't know what the myelogram meant. I didn't find out either, until last year, when I read it in my records from a neurosurgeon. Seven years is a long time to cave CES and AA and doctors all keep it hidden from you. After the drug test, three pharmacists said urine tests showed fentanyl much better than saliva tests, but that was all they would say. Fortunately my PCP referred me to another place. I didn't care for the new pain doctor because he was trying to put in a spinal cord stimulator. I didn't think this would help because my first pain doctor, that I trusted before he retired, said I had clumped nerve roots and I should get a pain pump. I went to another place six months later and I eventually told this doctor about the saliva test, because he is the only doctor that ever increased my medication in an effort to help me, and he treats patients more fairly than anywhere else I have been. He asked what strength the patch was. I told him it was a 50 mcg patch and he said he didn't think a saliva test would detect this small dose of a patch. I was glad to get that off my chest because it hurt me so deeply that the other place had done this to me when I have never abused my medications, and for them to try to make it look like I wasn't using, or maybe selling, the patches was very sh****!! Now that I am so much worse I am over it all too. I love my family very much, and they are the only reason I have been able to make it this long, but I wish so much that my life on earth would be over so that I would not have to live with terrible pain and suffering that will only get worse. I fear that I have a lot more suffering to endure, unfortunately, as I am not yet 60.

Thu, Jan 23 10:49am · Arachnoiditis: Trying to find a specialist in Spine Health

Thanks for sharing!

Thu, Jan 23 10:49am · Arachnoiditis: Trying to find a specialist in Spine Health

In 2016 one spine surgeon said I "probably" had arachnoiditis, but he sort of slid the comment in at the end of the office visit. I didn't know what questions to ask, but based on my previous appointments with him, he wouldn't have said very much, except to clarify that there was nothing he could do for me. Since then I have been told (after I asked if they could see it on the imaging) by three other neurosurgeons that I have arachnoiditis, and that I have cauda equina syndrome by one neurosurgeon, but they didn't mention this in the records, nor did the radiologist put it on the report. One radiologist said the diagnosis codes that the doctor put on the order would determine what information he would include in the impression. I took this to mean that unless the doctor gave the radiologist the O.K. nothing about certain things, such as iatrogenic conditions, would be on the report. The nurse practitioner ordered another sacral MRI, at my last pain management appointment, after we specifically discussed the fact that the previous imaging had severe artifacts from surgical hardware and a pain pump, and that no one had ever ordered imaging of the sacral nerve roots before. I explained that a neurosurgeon had told me, the previous week, that he could see arachnoiditis on the lumbar MRI that I took to the appointment. The nurse practitioner even asked the name of the doctor and typed it on his computer. I proceeded to tell him what the radiologist said and asked him to put arachnoiditis and cauda equina syndrome on the order. He indicated that he would do this, however, I was contacted by the person that was scheduling the MRI, who said he had put cauda equina syndrome, but not arachnoiditis, on the order. If I have the test and the radiologist doesn't see cauda equina syndrome, where will this leave me? I seriously doubt that he will say I have arachnoiditis, since none of the other ones have. Every radiologist in my area knows that surgery caused my problems. I could hear the nurses talking about this when I was lying in the MRI machine during the last test. I was approved for disability for a cervical spine problem, but I would like to find a pain management doctor that knows more about arachnoiditis. Did your doctor order MRI's for you, and if so did he put arachnoiditis on the order?

Thu, Jan 23 10:49am · Arachnoiditis: Trying to find a specialist in Spine Health

Your input is very much appreciated! Everything started with the surgeon in my small town who did the first back surgery that ruined my spine. He said he would only order MR imaging at the hospital where the surgery had been done, which was because he knew he could tell the radiologist what to put, and not put, on the report. When I told the surgeon that I did not want it done there he informed me and my husband that we no longer had a doctor/patient relationship and dismissed me less than two months after the surgery had been done. This was the perfect way for him to get rid of me. No one wanted to become involved with my care, however. Primary care doctors were rude. Neurosurgeons didn't want to see me, and if they did they wouldn't tell me the truth. The look on their faces told the story, though, after they saw my imaging discs. It was so hard to keep researching what doctor to see next, and I didn't know anyone in the medical field to advise me. After travelling from TN to doctors in five other states I finally saw the websites about blacklisted patients and this 100% describes my experience. Going to doctor after doctor and dealing with the false things that were put in my records to cover up what the surgeon had done, while having debilitating pain, destroyed my self confidence.

Thank you for the information and the website. I need all the help I can get. I am going to ask some of the radiologists, who have read my reports, to give me a more detailed imaging report. In the future, when I have a new test I will ask them, beforehand, if they will provide me with all of the findings, but let me tell you this. The nurse practitioner I saw the last time in pain mgmt. said he would order a pelvic MRI. I asked him to put DX codes for cauda equina syndrome and arachnoiditis on the order and explained that the last neurosurgeon I saw, the week before, had said he could see arachnoiditis on the disc I took. (I had already given them records from a neurosurgeon stating that I have C.E.S.) He wanted to know the name of the neurosurgeon and typed it in on his computer. It was the first time I saw this man at a pain mgmt. appointment. I had previously seen a nicer woman. The man indicated that he would put the DX codes on the order, but when the scheduling clerk called she said he had put C.E.S., and not arachnoiditis. I also noticed on the prescription for my medication that he had listed four DX codes. They included C.E.S. and "meningitis", but not arachnoiditis. Meningitis is the result of infection around the spinal cord, whereas spinal adhesive arachnoiditis is typically caused by an iatrogenic injury, such as a spine surgery. There is nothing in my records about an infection, but none of the doctors will say I have arachnoiditis because they know it is caused from the first surgery I had. The surgery was done seven years ago!!