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Posts (49)

4 days ago · Arachnoiditis: Trying to find a specialist in Spine Health

Hi, Lisa. Thanks for asking. The cramps are better and the pramipexole helps as long as I don’t walk barefoot on a cold floor.
I’m having serious problems though with idiopathic PN and autonomic neuropathy. Can’t find any free online info on my symptoms I’ll try the MC Connect PN Group. God bless you. 🙏💖

4 days ago · Arachnoiditis: Trying to find a specialist in Spine Health

Hi. I have had arachnoiditis for perhaps 10 years or more. Due to degenerative disk disease, I endured a large number of discographies, nerve blocks, spinal taps, myelograms and other invasive procedures as well as two spinal surgeries (cervical and lumbar with a great deal of instrumentation implanted). Arachnoiditis definitely can develop from too many invasions to the spine, as in my case. My primary symptom , which is differentiated from my other numerous neurological disorders and diseases, is burning pain in the buttox and severe cramps in my feet every day. They can be triggered by walking on a cold floor or just buy the temperature in the room being too cold. They are much worse at night. The only thing that has helped reduce the number of painful cramps per day is a drug called Pranipexole, prescribed by my neurologist several years ago. Prior to taking the medication, almost every step I took caused a “Charlie horse” in the arch of my feet. I hope this helps someone.

4 days ago · Arachnoiditis: Trying to find a specialist in Spine Health

Correct spelling: PRAMIPEXOLE. I take 0.5 mg. at bedtime.

4 days ago · Arachnoiditis: Trying to find a specialist in Spine Health

My neurologist is Dr. Ronald Aung-din in Sarasota, FL. He has prescribed Pramipexol 0.5 mg. to me for years. It reduces the number of cramps I have per day in the arches of my feet from ARACHNOIDITIS. His phone number is 941-342-9477. If anyone lives in the Sarasota area, perhaps he can help you. If you call him, please mention that I referred you.

@chrisinasuit Chris, since you live in Central FL, I’m sure the Mayo Clinic in Jax must also have excellent neurologists. I have seen two of them in the past.

Dr. Aung-din is also one of the State’s leading authorities on medical cannabis and was one of three physicians in FL approved to prescribe it prior to the amendment being passed to legalize it in October 2016. He prescribed it for me. I haven’t used it in a year but am considering requesting it again.

4 days ago · Arachnoiditis: Trying to find a specialist in Spine Health

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!


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

4 days ago · Arachnoiditis: Trying to find a specialist in Spine Health

Thank 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.

4 days ago · Arachnoiditis: Trying to find a specialist in Spine Health

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.

Mar 5, 2019 · Anyone Else With PTSD? in Mental Health

Good morning, Merry. Please forgive me if your notifications sound wakes you at this hour of the morning…DING. I fell asleep early before this post was finished and woke up at 1 a.m. My insomnia is just crazy, so my day has begun! Here’s what I wrote to you yesterday:

Good evening, Merry. I want you to know that you’re very much appreciated and loved. Your heart for others shines through your thoughtful and sincere words of compassion and love for others who also suffer like you. Being a moderator for this group is an enormous responsibility and very time-consuming and I’d like to personally thank you for all you do. I think you’re awesome!

Because I spend at least three days a week with the homeless and sponsor a few women that I see one-on-one every week, my life is very busy. What they don’t realize is that when I get home, I have to lie down immediately to relieve the physical pain. Of course, my husband is a priority and spending quality time with him is extremely important to me. Above all, my love of God, who loved me first, is my life and the foundation for all I do. I wouldn’t have survived all I have if he hadn’t been with me through it all.

I’m quite involved in my home church and am there at least a couple of times a week. Spending time with them and surrounding myself with other loving people who many themselves are or have been broken is crucial to me. I found that it’s excellent to have others we are accountable to. Sometimes all someone needs is a hug. It’s family. Many of them, including the homeless, attend my church and accept me, with all my faults, just as I am more than my family of origin. We can choose our own family. It fills the need for my parents and some of my siblings rejection of me. My “chosen family” love me with all my weirdness.

I discovered a long time ago that the “hole” in me could not be filled with anything or anyone but God. I tried to fill it with everything the world offers until I realized it was only him. So I quit being a people pleaser. No person can fill all my needs… not even my dear husband or incredibly loving daughter. Some people love me and some people don’t but I don’t need their approval. There is only one whom I care about pleasing.

Thanks for confirming that PTSD can have such negative effects on our physical body. I’ve shared previously that by refusing to deal with the abuse for so many years, I developed over 30 diseases. I can be doing really well handling conflict and issues when all of a sudden something triggers pains from the past… Father’s Day, his birthday, my daughter’s wedding, the birth of my grand-daughter when my ex-husband threatened that my parents “better not show up at the hospital or I’ll be in your dad’s face,” a movie or show where the father and daughter dance together. Thank goodness, the triggers aren’t every day; but when they come up, I deal with my “Demons” again, but I never give up and it’s become easier each time. I won’t let the past and bad choices of others who hurt me destroy my life. That would only hurt me.

I learned that holding in bitterness is like drinking poison and hoping the other person dies. It would only kill me. So I forgive them and go on with my life.

May I ask something of you? Please save my post and when you have a bad day, read the second paragraph again. I mean what I said about you.

Once again, thank you for being there for us.