Arachnoiditis: Trying to find a specialist

Posted by msaliceinpain @msaliceinpain, May 22, 2016

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.

@bfsecurityguy

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.

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I 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.

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@bfsecurityguy

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.

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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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@bfsecurityguy

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.

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ARACHNOIDITIS & 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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@bfsecurityguy

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.

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Hello. I was diagnosed with Arachnoiditis 3 years ago. Went from regular doc to pain management doc. I would advise you go to one in your area. They have so many options. I am on fentayl patch as well as hydrocodone. He also put me on marninol. Works good. I live in SC so we don’t have recognized Cannabis outright. I am trying CBD for first time. Hope it works! Good luck!

Liked by Lisa Lucier

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@bfsecurityguy

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.

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Did you ever get any help??

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@jseibert

Did you ever get any help??

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Hi, @jseibert – just wanted to find out which member in this discussion you might be asking if they received any help? It can be helpful to put the @____ (whatever their username is) so that that person is notified you mentioned them and can be sure to respond to you.

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@peggyella

ARACHNOIDITIS & 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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Hi, @peggyella – just wanted to check in with you and see how you are doing? How are your cramps lately? How are things going with the pramipexole?

Liked by peggyella

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@lisalucier

Hi, @jseibert – just wanted to find out which member in this discussion you might be asking if they received any help? It can be helpful to put the @____ (whatever their username is) so that that person is notified you mentioned them and can be sure to respond to you.

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I’m just reaching out for anyone who has experience with arachnoid cyst in the brain. My daughter has missed a month of school having horrible pressure in her head and been to ER twice for migraine meds with little relief. Trying to get into Mayo sooner than later for a 2nd opinion.
Thanks,

Jennifer

Liked by Lisa Lucier

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@lisalucier

Hi, @peggyella – just wanted to check in with you and see how you are doing? How are your cramps lately? How are things going with the pramipexole?

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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. 🙏💖

Liked by Lisa Lucier

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@ledgerwp

I too have Arachnoiditis and have had some pretty bad experiences with doctors not believing in the disease. I had a pain pump put in in 2014 with mistakes made and complications. I also have cauda equana which is even harder to get a doctor to believe. I’m in big trouble now since my doctor kicked a lot of us out so I have a pain pump which is close to the time for filling. If anyone knows of an Arachnoiditis doctor that cares enough to find solutions for me, please let me know. I stay so depressed and that’s not me. I live in Alabama but will travel anywhere just to get help. Thanks

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I ended up with cauda equina syndrome and arachnoiditis after a botched L5-S1 laminectomy. On top of all the severe nerve pain, and lower extremity weakness and atrophy, I had to endure so much unethical and biased behavior from the medical field in East TN. The surgeon said I did not have cauda equina syndrome and it took seven years for me to find a neurosurgeon in NC that would diagnose the conditions in, however, I still do not have a pain management doctor that understands enough about the problems to help me. He prescribes high doses of opioids, which are not helping. Most of my pain is in the rectal area due to the surgeon putting a screw in the sacral nerve root. Did you ever find a doctor to help you?

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@jelizabeth

I ended up with cauda equina syndrome and arachnoiditis after a botched L5-S1 laminectomy. On top of all the severe nerve pain, and lower extremity weakness and atrophy, I had to endure so much unethical and biased behavior from the medical field in East TN. The surgeon said I did not have cauda equina syndrome and it took seven years for me to find a neurosurgeon in NC that would diagnose the conditions in, however, I still do not have a pain management doctor that understands enough about the problems to help me. He prescribes high doses of opioids, which are not helping. Most of my pain is in the rectal area due to the surgeon putting a screw in the sacral nerve root. Did you ever find a doctor to help you?

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@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!!

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@christinasuit

@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!!

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Hi, @christinasuit – it is indeed challenging that in addition to your diagnosis of early adhesive arachnoiditis you now have a diagnosis of shingles. I've had shingles before, and it is indeed painful and bothersome. I'd suggest you may want to check out and post in this long-standing Mayo Clinic Connect thread on shingles https://connect.mayoclinic.org/discussion/shingles-on-face-and-in-eye

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@christinasuit

@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!!

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Your situation sounds like what my wife went through several years ago and is still fighting. Her immune system was apparently lowered (according to a couple of doctors) by being on a steroid for another medical issue for too long of a period of time. This brought on the shingles virus which even though she caught quickly she was in intense pain for 3 or 4 months. Like you she was just about bed ridden and this is what I want to highlight to you.

Her shingles pain seemed to be subsiding after 3 or 4 months then it got to a level where it stayed and has been there for 8 years now. Our conclusion is that something else kicked in and the theories are:

1: By favoring one side while being bed ridden she developed a nerve entrapment issue
2. By being inactive for such a long period of time she developed myofacial issues

Both of the above results in symptoms that experiences and can be easily researched on the Internet. So my comment to you is to keep as active as you can and don't favor any particular positions while recovering. I can't say for 100% this is my wife's problems but with all that she has been through these two conditions seems to make the most sense.

Liked by Lisa Lucier, teetee7

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@christinasuit

@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!!

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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.

Liked by teetee7, jelizabeth

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@peggyella

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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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.

Liked by teetee7

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