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Arachnoiditis: Trying to find a specialist

Spine Health | Last Active: Mar 31 2:11pm | Replies (325)

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@jelizabeth

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.

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Replies to "What people like us have been through no one should have to go endure. My medication..."

@jelizabeth Hello! I am so sorry you are going through all that you are. I don’t know what else to say other than I am praying for you........Karen

@jelizabeth I totally feel for you and I absolutely know what you're going through. Everything you mentioned has happened to me including the pain doctor fudging the drug test, doctors not listening to your needs and ignoring the problem, living only for your family while wishing it would all be over, etc.

I also had the fentanyl patches. I had them for a total of 15 years. My doctor did a urine test and then called me the next day and told me that the fentanyl didn't show up on the test so I must either be selling them or giving them away. Why would I pay almost $300 per month for them and then give them away? I'm no drug dealer either I also never misused any of my medications and he knew it. I called the lab that processed it and they told me that the doctor would have had to ask for a special test to detect the fentanyl. He did a simple 12 panel test. I never got to talk to the doctor again but I did talk to his nurse and I could tell that she knew what he did & she felt bad. I think he did it because they drained me of all the money I had and was no longer doing injections/procedures. I was just coming in to get my medications refilled. Acually, I think the big opioid scare played a part as well because this happened with me on August 17th, 2015 and I believe the warning about the opioids came out on August 15th. Pretty sad that they just screw people over like that and get a way with it. From that point on I carried a copy of my test results and gave it to each doctor I've seen since then to prove my case.

As far as the pain goes, trust me, I understand. I lay here every day wishing it would hurry up and kill me already. I don't want to die, I really would rather get better and live whatever life I have with my family. It gets so hard to be positive when you're in so much pain. All I can tell you is you're not alone and hang in there!!! Take care!

@peggyella I also have Arachnoiditis with debilatating pain,I feel for everyone withth this condition. I just now joined this group and don't know where to go to post my own very long story. I would like to find a support group. From what I have read elsewhere doctors don't know, understand this condition, or know when a patient has this. It seems to me more awareness needs to be brought out to doctors and the goverment.