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.

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@stoaway

Hi @johnbishop unfortunately no. I have seen so many different doctors for both my Myasthenia Gravis and the Arachnoiditis and the answer I receive from everyone is that there is no cure for either one only pain management with pain meds. To be honest I am truly tired of taking pain meds they help a little but then the body creates a tolerance to the meds and it becomes a roller coaster ride. I live in pain every day and I feel that there is no relief in sight. I am willing to go or travel anywhere where there is a doctor that can help me. I live in Miami but have been unable to find someone that can treat both disprders which is hard to believe. Do you have any recommendations?
Thank you, Mayra

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Hi Mayra @stoaway, Mayo Clinic Pain Management Program may be something to look into to see if it will help. I have no medical training or background but I've heard others mention that it has been helpful. I did see that they have a handbook in PDF format that provides information about the program. Here is the link:
https://www.mayoclinic.org/documents/mc1459-02-pdf/doc-20078829

Mayo Clinic Jacksonville Campus does have a Pain Rehabilitation Center that may be helpful:
https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center

John

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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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I’m so sorry for your condition and pain. While researching spinal cord stimulators I read that they are used to treat the pain for Arachnoiditis. Here’s the website https://www.aans.org/Patients/Neurosurgical-Conditions-and-Treatments/Spinal-Cord-Stimulation I hope this will be helpful to you.

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@marilynmeadors

I just need to find a neurologist in Arkansas, preferably in Fayetteville, who can diagnose this ailment. I’ve read that it is difficult and it takes special tests.

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Marilyn, Have you found a doctors? I am in need of one. If you have any resources please share them with me.
I do hope you are better.
Judy Falkoff
Conway, Ar.

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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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Please help me join this group.
How do I join?
Thanks

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@goetf4997

Please help me join this group.
How do I join?
Thanks

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Hello @goetf4997, If you want to receive all of the email notifications when a member posts to this discussion you just have to go to the top of discussion and click the Follow link. After you click on the link it will change to +Following to let you know you are now following the discussion.

More information can be found in the Get Started on Connect guide. Just click the link in the left column on the bottom of any page on Connect. I've also included it here:
https://connect.mayoclinic.org/get-started-on-connect/

John

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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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I to have Arachnoiditis and I live in Florida searching for a specialist also. I have read up on a doctor Forest Tannant he has used a regimen to treat arachnoiditis I am using his recamendations and trying to see if my pain management doctor will follow his treatment plans. He said Arachnoiditis patient need to have control of the inflamation Toradol shots and other antiaflamitory meds we also need are hormones checked because we usually will have a low count and should be on hormones meds that help with the ones we are low in. Dr. Tannant also states we need to find Doctors that will recognize that we have Arachnoiditis this will be the hard part. If anyone knows of any Doctors in Florida please let me know thanks.

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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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I live in Central Florida and have been looking for a Dr/neuroradiologist as well. I actually posted for a recommendation yesterday on one of the Arachnoiditis fb groups that I am in. I saw a pain doctor in March 2015 who, very matter of factly, scheduled a series of spinal epidural injections for me without any prior testing done. After the first injection I had numbness that lasted longer than it should have but was assured that happens sometimes. Before the second injection I was asked my pain level which was a 6/7. As soon as I woke from anesthesia I said something was very wrong. My pain was a 9/10 and I could tell there was something different. When it didn’t get better after steroids I insisted on an mri which was done at the local imaging center. The results listed “no Arachnoiditis found” which I found odd since I had never heard that word before. I had posted my experience on fb and a friend said I probably did have Arc from the injection and the imaging center was probably owned by the same doctors as the pain center. She suggested I send my disc to Dr Aldrete in North Florida. I sent my disc to him as well as a neurologist, Dr Sauborm, in California. Both doctors responded with detailed reports showing specific images with evidence of the early stages of Adhesive Arachnoiditis. The mri was just weeks after the second injection. I took both reports to my primary doctor who was friends with the local radiologist. He called him while I was there and went over the reports explaining everything the specialists found. The local radiologist refused to change his report. Shortly after I received a certified letter from the pain doctor saying that I was no longer welcome as a patient. That was almost 5 years ago now and my health has been steadily declining as my pain levels have been increasing. I am still fighting for disability because of the local radiologist’s reports of no Arachnoiditis and the fact that I “paid for outside reviews”. I am now fighting at the federal, and final level for disability. I have learned a lot in the past few years about the disorder, especially that I need to have a follow up mri to see how far the disorder has advanced but if I go to another doctor or another radiologist that is not familiar with Arc and does not know how to diagnose it and ends up misreading a new mri, no matter how evident the Arachnoiditis may be, he/she can destroy my chance of getting effective treatment in the future. I continually hear that I don’t qualify for this or can’t receive that because “I do not have a definitive diagnosis that would warrant it”. I use aids in my everyday use (cane, walker and wheelchair) my husband has to help me shower/dress and so many days I can’t get out of bed at all. Finding the right doctor with the knowledge of diagnosing and treating is such an important step. One I have been praying for and working so hard to find for almost 5 years now so if anyone knows of one please share!

REPLY
@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. 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.

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@peggyella

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.

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

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@christinasuit

I live in Central Florida and have been looking for a Dr/neuroradiologist as well. I actually posted for a recommendation yesterday on one of the Arachnoiditis fb groups that I am in. I saw a pain doctor in March 2015 who, very matter of factly, scheduled a series of spinal epidural injections for me without any prior testing done. After the first injection I had numbness that lasted longer than it should have but was assured that happens sometimes. Before the second injection I was asked my pain level which was a 6/7. As soon as I woke from anesthesia I said something was very wrong. My pain was a 9/10 and I could tell there was something different. When it didn’t get better after steroids I insisted on an mri which was done at the local imaging center. The results listed “no Arachnoiditis found” which I found odd since I had never heard that word before. I had posted my experience on fb and a friend said I probably did have Arc from the injection and the imaging center was probably owned by the same doctors as the pain center. She suggested I send my disc to Dr Aldrete in North Florida. I sent my disc to him as well as a neurologist, Dr Sauborm, in California. Both doctors responded with detailed reports showing specific images with evidence of the early stages of Adhesive Arachnoiditis. The mri was just weeks after the second injection. I took both reports to my primary doctor who was friends with the local radiologist. He called him while I was there and went over the reports explaining everything the specialists found. The local radiologist refused to change his report. Shortly after I received a certified letter from the pain doctor saying that I was no longer welcome as a patient. That was almost 5 years ago now and my health has been steadily declining as my pain levels have been increasing. I am still fighting for disability because of the local radiologist’s reports of no Arachnoiditis and the fact that I “paid for outside reviews”. I am now fighting at the federal, and final level for disability. I have learned a lot in the past few years about the disorder, especially that I need to have a follow up mri to see how far the disorder has advanced but if I go to another doctor or another radiologist that is not familiar with Arc and does not know how to diagnose it and ends up misreading a new mri, no matter how evident the Arachnoiditis may be, he/she can destroy my chance of getting effective treatment in the future. I continually hear that I don’t qualify for this or can’t receive that because “I do not have a definitive diagnosis that would warrant it”. I use aids in my everyday use (cane, walker and wheelchair) my husband has to help me shower/dress and so many days I can’t get out of bed at all. Finding the right doctor with the knowledge of diagnosing and treating is such an important step. One I have been praying for and working so hard to find for almost 5 years now so if anyone knows of one please share!

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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.

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@christinasuit

I live in Central Florida and have been looking for a Dr/neuroradiologist as well. I actually posted for a recommendation yesterday on one of the Arachnoiditis fb groups that I am in. I saw a pain doctor in March 2015 who, very matter of factly, scheduled a series of spinal epidural injections for me without any prior testing done. After the first injection I had numbness that lasted longer than it should have but was assured that happens sometimes. Before the second injection I was asked my pain level which was a 6/7. As soon as I woke from anesthesia I said something was very wrong. My pain was a 9/10 and I could tell there was something different. When it didn’t get better after steroids I insisted on an mri which was done at the local imaging center. The results listed “no Arachnoiditis found” which I found odd since I had never heard that word before. I had posted my experience on fb and a friend said I probably did have Arc from the injection and the imaging center was probably owned by the same doctors as the pain center. She suggested I send my disc to Dr Aldrete in North Florida. I sent my disc to him as well as a neurologist, Dr Sauborm, in California. Both doctors responded with detailed reports showing specific images with evidence of the early stages of Adhesive Arachnoiditis. The mri was just weeks after the second injection. I took both reports to my primary doctor who was friends with the local radiologist. He called him while I was there and went over the reports explaining everything the specialists found. The local radiologist refused to change his report. Shortly after I received a certified letter from the pain doctor saying that I was no longer welcome as a patient. That was almost 5 years ago now and my health has been steadily declining as my pain levels have been increasing. I am still fighting for disability because of the local radiologist’s reports of no Arachnoiditis and the fact that I “paid for outside reviews”. I am now fighting at the federal, and final level for disability. I have learned a lot in the past few years about the disorder, especially that I need to have a follow up mri to see how far the disorder has advanced but if I go to another doctor or another radiologist that is not familiar with Arc and does not know how to diagnose it and ends up misreading a new mri, no matter how evident the Arachnoiditis may be, he/she can destroy my chance of getting effective treatment in the future. I continually hear that I don’t qualify for this or can’t receive that because “I do not have a definitive diagnosis that would warrant it”. I use aids in my everyday use (cane, walker and wheelchair) my husband has to help me shower/dress and so many days I can’t get out of bed at all. Finding the right doctor with the knowledge of diagnosing and treating is such an important step. One I have been praying for and working so hard to find for almost 5 years now so if anyone knows of one please share!

Jump to this post

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.

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@rpennino

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.

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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.

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