Arachnoiditis: Trying to find a specialist

@jelizabeth I am so sorry to hear your story and hear about your continued pain! I just continue to see my general practitioner. With the opioid crack down he is so limited now though and my pain seems to be getting worse (it seems) Every day.
Now on top of it I have been diagnosed with shingles. I never got the rash. The dr said we caught it early enough so I have been on the antibiotics but the pain is still there. I pray I don’t get the postherpetic neuralgia where the shingles nerve pain never goes away but with my luck...
Currently I am also having Major swelling in my joints which is Very painful. I had bloodwork done yesterday so I had them add esr and crp levels to see the inflammation going on. I have been bedridden for 8 weeks now. I try to do light stretches/movement but then I get muscle spasms. I am just so totally over it!!

ARACHNOIDITIS.
Hi Chris, Judy, Myra, John, Patrick and friends with Arachnoiditis. @chrisinasuit @judyfalkoff @rpennino @johnbishop @patrick17 @stoaway @ledgerwp
I’ve had it since my last spinal surgery nearly a decade ago. Awful for all of us. Some of you indicated that you have not found a specialist to diagnose or treat Arachnoiditis and are willing to travel. I found some good and encouraging information on the Cleveland Clinic website.

My former pain management doc once said, “There’s nothing available to treat Arachnoiditis. I’d have to put enough morphine in your pain pump to put you in a coma which obviously is not a solution.

In the interim, my neurologist has had me on pramipexole that lessens the amount of painful cramps I get in my feet every day, especially at night.

However, the past year or so, I’ve been having sudden jolts of what feels like an electric shock in my feet. It makes me jump! I’ve been assuming it was the peripheral neuropathy, but after reading this article, I wonder if it’s not from “progressive” Arachnoiditis (which I also didn’t know but should’ve guessed). Anyone else have this symptom?

Below, I copied the article for your convenience. If you want to contact them with questions or for an appointment, go to consultqd.clevelandclinic.org. I hope this helps someone.

They mention the spinal cord stimulator. I had one implanted years ago and it didn’t work for me, but this physician states that they are greatly IMPROVED today.

Also, I don’t know if the snail venom injected in my spinal column that they speak of would work for me. I was on it several years ago in my pain pump and after a year, I had audio hallucinations from it and it had to be replaced with dilaudid which just made me dysfunctional. Eventually, I came to the conclusion that opiates and the venom can’t relieve my pain so I weaned off all of them. I don’t take any pain medicine so I’m very alert and do quite a lot for a disabled 65-year-old woman... gardening, crafts, writing, housecleaning, a full-time ministry and social life, as well as involvement with my church, family and friends... BUT IT HURTS! ALL THE TIME!

CLEVELAND CLINIC:

Arachnoiditis is a rare condition that can be overlooked. Its causes differ today from decades past, and new modalities are offering more optimistic prospects for pain relief.

Characterized by severe stinging or burning pain, arachnoiditis is an inflammation of the arachnoid tissue of the spinal cord with subsequent scar tissue formation. In the years prior to widespread use of magnetic resonance imaging, intrathecal injection of contrast material for CT myelography was the primary cause. Intrathecal steroid injections also sometimes caused arachnoiditis, but the use of intrathecal steroid has been supplanted by other means to address pain diagnoses.

Today, arachnoiditis is seen most often following spinal surgery, and occasionally following bacterial or viral meningitis. “You won’t encounter it every day in your practice, but it’s also not a zebra. It’s probably a bit more common than is recognized,” says Cleveland Clinic pain specialist Robert B. Bolash, MD.

Sometimes the condition can be dismissed because the vivid “electrical” sensations described by patients do not follow the path of any nerve. “But it is definitely a real condition and a challenging one,” Dr. Bolash says.

A 1990 review article about arachnoiditis in the Journal of the Royal Society of Medicine concluded: “The relentless and progressive pain syndrome…is taxing to the patient’s morale. In many instances, doctors, relatives, and friends fail to realize that the pain can be as bad as terminal cancer, without the prospect of death to end the suffering.”

The picture is far less bleak today. Two different modalities, spinal cord stimulation (SCS) and intrathecal infusion of the N-type calcium channel blocker ziconotide, can provide significant opioid-sparing pain relief to patients with arachnoiditis, along with chronic pain of other etiologies.

Cleveland Clinic was recently involved in a multicenter, prospective, randomized clinical trial comparing 6 months of treatment with spinal cord stimulation in patients with chronic refractory pain following back surgery. A proportion of subjects found marked improvement in pain which permitted them to resume activities they’d since abandoned due to intractable pain.

“In last 5 years or so, implanted spinal cord stimulators have come a long way in terms of their effectiveness, with a number of innovations in the type of energy we deliver, the frequencies and waveforms. They’re definitely a big advance, and something I think we’ll see improve further,” Dr. Bolash says.

The other approach to pain relief in arachnoiditis involves intrathecal infusion of ziconotide, which is derived from the paralyzing venom of a marine snail and can only be given into the cerebrospinal fluid. “Pain pumps are no longer just for end-of-life chronic pain, but have permitted a number of patients to eliminate oral medications and their side effects” he notes.

These new approaches to arachnoiditis are allowing people to have functional improvement. “We don’t have perfect options or cures, but for those people who have been living in distress, we have something,” Dr. Bolash says. “And these options help us to avoid long-term opioid prescriptions that can lead to side effects such as addiction.”
Jan. 4, 2018 / Pain Management / Education
Tags: arachnoiditis, pain management, robert bolash

@jelizabeth I am so sorry to hear your story and hear about your continued pain! I just continue to see my general practitioner. With the opioid crack down he is so limited now though and my pain seems to be getting worse (it seems) Every day.
Now on top of it I have been diagnosed with shingles. I never got the rash. The dr said we caught it early enough so I have been on the antibiotics but the pain is still there. I pray I don’t get the postherpetic neuralgia where the shingles nerve pain never goes away but with my luck...
Currently I am also having Major swelling in my joints which is Very painful. I had bloodwork done yesterday so I had them add esr and crp levels to see the inflammation going on. I have been bedridden for 8 weeks now. I try to do light stretches/movement but then I get muscle spasms. I am just so totally over it!!

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.

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.

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.

@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!

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.

<p>I am desperate to find a dr who treats arachnoiditis. I live in lake county and no one around here can help me. I have been in pain management for almost 3 years. I want out!!!! I want my life back but can't find anyone who wants to help me..I'm so tired of being in pain, feeling like a failure to my family and feeling alone. Any help much appreciated.</p>

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