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1 day ago · Any Adhesive Arachnoiditis members here? in Brain & Nervous System

Yes, I live in East TN and a spine surgeon caused me to have arachnoiditis and cauda equina syndrome seven years ago. I have been to many doctors who all covered up the problem. I am prescribed high doses of pain medication, but it has no effect on the sacral/anal pain that has destroyed my life. Are there really any doctors that treat these problems?

Sat, Mar 2 2:27am · I am desperate to find a dr who treats arachnoiditis. in Brain & Nervous System

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.

Sat, Mar 2 12:04am · I am desperate to find a dr who treats arachnoiditis. in Brain & Nervous System

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, Feb 28 2:48am · arachnoiditis in Brain & Nervous System

My sincere apologies. I have read your posts and you have been through a lot of unfair treatment. Doctors are terrible people, evidently, unless you are rich. Is pudendal neuralgia your final diagnosis or did you manage to find a doctor that would tell you more? I have another LONG story if you have time to read it. A new gynecologist got my hopes up last year. She said she also had training in pain management and a degree from Boston, and that I could have a pudendal nerve problem, so I went on another wild goose chase, this time to Dr. David Prologo at Emory in GA. I had spoken to his office and my PCP had sent records. I was supposed to have some kind of diagnostic injection, and then cryotherapy. Dr. Prologo spent five minutes with me and said my problem sounded "central" and that he was sure the injection would not work. His "secretary" (that had told me to come) suggested that I let them make copies of my discs and said she would give them to one of the radiologists that specialized in spinal nerve injuries, but I never heard a word, even after leaving a message four weeks later. I don't know if you have seen anyone for pudendal neuralgia, but Dr. Prologo would probably look at your imaging if you sent it. I also know of a lady from Knoxville that had levator ani syndrome and went to a doctor in Boston (retired now) who performed a successful surgery. Her recovery has been long, but she is much better now. I didn't mention in my other post that the anal pain I have had for seven years was miraculously gone after the my last back surgery, but the area felt "iffy" like if I bent over or moved too fast the pain would come back. I had worse right leg and foot weakness, and my toes drug on the floor three weeks later. I fell on my knee. It wasn't a bad fall, but I could feel the anal inflammation returning and sure enough the same pain was back by the following day. I wanted to kill myself. I had to go back to Charlotte and see a physician assistant. He did ONE X Ray and that was it. He finally agreed to do a MRI on the stand up machine, but I had to wait for a month to get in. I received a call from an assistant who said I should not wait this long because there might be a problem, but she wouldn't tell me what it was. I had a traditional MRI, without contrast, and didn't show anything to explain the anal pain. It did confirm that the nurse in the hospital had not removed all of the surgical drain, which showed up on the X Ray and the doctor was able to see all along. The MRI protocols were, therefore, not to visualize L5-S1, they were to see the surgical drain. The physician assistant had put in my records that he didn't tell me about the drain because the doctor wasn't aware. I don't think the radiologist saw it the day I was there. I had to go back and have the drain removed in day surgery by the neurosurgeon. He had said before doing the back surgery that he thought surgery might help my pain at L5-S1, but after the fall he said he had no idea why the pain was "temporarily gone". What a turn around, but he wouldn't talk to me about it, so I don't know if inflammation caused the pain to return. I had another fall, on concrete, two weeks after the first fall, which has caused a huge spread of muscle and nerve pain, and numbness in my feet. I had a pain pump put in, but it isn't helping at all and I suffer constantly. My insurance changed and I now have the only kind the doctor doesn't accept. I am having to pay for the office visits and pain pump refills until I meet the out of network deductible. I had another MRI but it couldn't be done on the 3 Tesla, because of the pain pump. Results-possible fluid at the insertion site and images of "severely reduced quality". The pain pump rep. failed to tell me that the pain pump would cause a lot of artifact when I asked if I would still be able to have MR imaging, and I won't know until my follow up what, if anything, will be done about possible fluid collection. If you managed to read all of this THANK YOU.

Wed, Feb 27 12:04pm · I am desperate to find a dr who treats arachnoiditis. in Brain & Nervous System

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.

Wed, Feb 27 11:00am · I am desperate to find a dr who treats arachnoiditis. in Brain & Nervous System

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.

Tue, Feb 26 5:01pm · arachnoiditis in Brain & Nervous System

Thanks for your kind words. Not that I would want anyone to have health issues, but it helps to know that other people can relate to what I have experienced and know that doctors do always protect each other first and foremost. I hope your health was not permanently impacted.