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Arachnoiditis: Trying to find a specialist
I am from North Carolina. And out of the 15 doctors I have seen since 2015 have said that arachnoiditis is rare and you do not have it. But no one is listening to my symptoms. Received a shot in my L5. But the doctor missed and hit the nerves while injecting Since that date I went from being able to walk to not at all. I am now in a wheel chair. Pain is in both legs to toes. None of the pain meds that my pain management has prescribed touches the pain. I have jerks in both of my legs. Weakness. Tingling and numbness in feet. My right eye has lost vision. I sweat on the top of my head for no reason. And out of the 3 MRIs I have had none have been done on the lumbar wth contrast. The pain gets worse week by week and no luck on finding a doctor. We are willing to travel if necessary. Please help.
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So sorry to hear this but for sum reason it is hard to get someone to actually write up that you have Arachnoiditis. I have had it for a long time and just found out that a mylagram test with dye will show the Arachnoiditis and you can have your primary order it. It is a 20 minute test, I have a pain pump wich they put the dye in but my pain doctor was able to see everything.
After all these years this is the 1st time I’ve heard of this. Thank you so much making people aware. My experience has been a nightmare and doctors can be very crooked. I had an early diagnosis by top doctors but other doctors thought when they made a mistake they could pull the “you don’t have the disease” card to cover up. Thank you again for your post.
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
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1 ReactionHi @peggyella, I think there are some members here that have had a spinal cord stimulator implanted in the last year or so. I did find some information on improvements from Dec 2017 when this article was created.
New advancements in spinal cord stimulation for chronic pain management.
-- https://www.ncbi.nlm.nih.gov/pubmed/28938297
A review of spinal cord stimulation systems for chronic pain
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4938148/
It might be worth looking into or discussing with your doctor.
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1 ReactionHere is the link to the article that @peggyella wished to share with you.
- Rare Pain Condition Still Exists in New Forms with New Hope for Relief https://consultqd.clevelandclinic.org/rare-pain-condition-still-exists-in-new-forms-with-new-hope-for-relief/
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2 ReactionsThank you, John. Yes, from the Cleveland Clinic article, they’ve improved a lot. I used to have to turn the level up so high that it made my legs completely unsteady so it was not profitable. The first time my mother saw me try to walk, it scared her to death! LOL. I appreciate the articles and will check it out.
I was interested in the snail venom except that when it was in my pain pump it caused audio hallucinations after a year. The music, although not recognizable, was so loud that I called my neighbor to ask if her teenagers were blasting their stereo! She said they weren’t home and she was napping. No stereo. She must’ve thought I was crazy. My doctor hesitated to believe me at first because she said she had never read anything on audio hallucinations being a side effect. It is usually visual hallucinations that are a problem. But then she checked blogs and found many comments from patients who had the same symptoms.
So I plan to contact Cleveland Clinic about whether receiving it as an injection into the spine would or would not be the same as a constant drip in a pain pump.
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1 ReactionI was so naive, but am learning that some docs are just not in it for the patient’s best interest. I was “diagnosed” in July 2018 after my husband demanded that the nurse practitioner (for the back surgeon) give us more/better/different answers to what I was experiencing. She looked back at an MRI from October 2017 and said "when did you have the MRI with contrast?" I explained that I had never had an MRI with contrast – that I wasn't told to or scheduled for one. She told me that the radiologist saw indications of arachnoiditis on the MRI, but wanted to confirm. A week later, it was confirmed and the back surgeon told me that he could do surgery on my spondylolothesis, but not the arachnoiditis. I had looked it up after the first mention, so I declined surgery since I've read that it makes the AA progress faster. No doctors here know ANYTHING about AA – all they want to do is inject me or cut on me. I'm desperate to see a doctor who understands what it is and how much it hurts (and affects my LIFE!). I just requested all of my records from the spinal surgeon’s office because my primary doc said there’s no me too. Of arachnoiditis in the reports he received from them. They are al making me feel like I’m crazy! I didn’t self-diagnose this - I had never even HEARD of it. Having said that, I does explain the horrible electric pains I’ve been describing for the past year-and-a-half. I use a TENS unit almost 24/7. It helps me sleep a bit longer, but sometimes the sticky pads come off at night and that wakes me up. I’m on gabepentin (1200-1500mg/day), diclifemac and Lorzone. I’ve repeatedly declined narcotics because my husband was out of town and I had to be able to drive my daughter to/from school and activities. She is now 16, though, so I’m contemplating asking for them. Since I previously declined them for the past year and a half, Doctors seem to not believe the pain I’m in. I have an extremely high threshold for pain. Having said that, I’m trying to ween back into my normal (pre-AA) active life… Which puts me in even more pain. I wish there was a way of allowing a doctor to experience this feeling.
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1 ReactionI have Ahesive Arachnoiditis and I wished I had known that I needed a rheumatologist. Things started to get worse over time. My thyroid started not working properly. I then developed Amemia from low saturation. I was so tired and my heart was always racing. My inflammation markers started climbing and climbing. This went on for years. My C- reactive protein test that my doctor first took was a 22 mg/L it should be less than 1mg/L. When I finally went to a rheumatologist it was a 32Mg/L. My ESR 56. When I went to the rheumatologist she asked what took me so long to come? They have medicine to stop the progression of an autoimmune diease. I had developed Raynards syndrome. She saw that right away. My toes were purple and swollen. This all comes from chronic inflammation. I was put on calcium channel blocker’s and lupus medication . My C-reative protein went down to 8mg/L in 3 weeks. I first got tested in 2015 and never been below a 22mg/L. I couldn’t shower without sitting down after I got out. I was so fatigued . I was not as tired. Don’t get me wrong I have days. It’s just not everyday.
My hair started growing back in. It was thinning and felt like straw.
My neurologist was giving me narcotics and I stopped taking the strong stuff on my own. When I went to rheumatologist first thing I said was I don’t want any pain medication. I got her attention then. I told her I want to get my inflammation under control. Inflammation was destroying my body.
I still have issues with my iron, Low iron, high Ferritin and low saturation. My B-12 is over 2000 and normal below 900. My family doctor wants me to go to the Cleveland Clinic. They are familiar with Ashesive Arachnoiditis and auto immune disease.
If someone would have told me that I needed to get the inflammation under control. I wouldn’t have developed all these other issues.
I didn’t know that a rheumatologist could help me.
Hi - many of you have shared about your arachnoiditis, and it would be great to hear how you are doing. I'm sure others would benefit from your experiences.
@jlfisher56 - you'd mentioned that a doctor talked to you about a pain pump or a stimulator, and that you declined. Did you decide to go another treatment route instead? Are you still using pain patches and oral medications?
@ginpain - how is your pain? What is helping you most to control it?
@stoaway - how are you feeling lately? How is walking going for you?
@annmaria - were you able to get a first floor apartment? How are things going with your pain and trying to clean, cook and other household chores you said were getting so difficult?
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1 ReactionARACHNOIDITIS & MUSCLE CRAMPS
Hi. I’ve had numerous spinal procedures: 3 myelograms, diskograms, spinal taps, epidurals, nerve blocks, C/S surgery and L/S surgery, both with instrumentation. Result, about 11 years ago: Arachnoiditis. Unbearable cramps in both arches of my feet with every step.
My neurologist put me on pramipexol (furfural acetate). It is a Dopamine agonist/promoter. It’s used to treat Parkinson's disease and restless legs syndrome, but also reduces the frequency of my cramps from Arachnoiditis so I can walk. The cramps are worse at night.
Other brand names are Mirapex, Mirapex ER. By prescription only. Fortunately, I don’t drink alcohol as it can cause an interaction.
There are side effects, so read up on it before deciding to take it.
I’m starting to wonder if pramipexol is what has radically worsened my bladder incontinence. I plan to ask my neurologist in 2 weeks.
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