1. < Spine Health

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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kenyalama | @kenyalama | Jul 9, 2021

You could see Dr. Sandroni Mayo Clinic in Rochester or Dr. Hantoon same place
They came up with my diagnosis plus pelvic floor dysfunction
I also had a car accident that triggered Rheumatoid arthritis and relentless trigeminal neuralgia
I cannot take Neurontin, it causes amnesia on me
Good luck with all my heart

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1 reply
contributor | @contributor | Jul 10, 2021
In reply to @kenyalama "You could see Dr. Sandroni Mayo Clinic in Rochester or Dr. Hantoon same place They came..." + (show)
@kenyalama

You could see Dr. Sandroni Mayo Clinic in Rochester or Dr. Hantoon same place
They came up with my diagnosis plus pelvic floor dysfunction
I also had a car accident that triggered Rheumatoid arthritis and relentless trigeminal neuralgia
I cannot take Neurontin, it causes amnesia on me
Good luck with all my heart

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Thank you for the recommendation! Best to you too!

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cebfw | @cebfw | Aug 8, 2021

I had surgery at L3-4 level about 14 years ago and since then mri (s) have shown nerve root clumping or adhesion which has been diagnosed as adhesive arachnoiditis (AA). There is no greater pain. I know that there is no cure but I understand that it is treatable. Thanks to Dr. Forrest Tennant in West Covina, California I now have a greater understanding of AA by reading his monthly newsletters and noting his advice. My pain at the nerve clumping area is constant. In addition I have severe stenosis at 3 levels including my neck. I am now taking lyrica, cymbalta and of course opioids. Crying helps but is obviously not a long term solution. Where are the pain management doctors who specialize in treating Arachnoiditis? 10 out of 10 doctors who I meet have never heard of this rare disease. I am close to giving up.

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cblank017 | @cblank017 | Aug 9, 2021
In reply to @peggyella "Correct spelling: PRAMIPEXOLE. I take 0.5 mg. at bedtime." + (show)
@peggyella

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

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Does tat help you? I surmise I have AA but I have no one to turn to...my surgeon doesn't want any part of it or doesn't know that much about it. I am on lyrica and dicofenac now. What side effects do you suffer from with the pramipexole? Who prescribes it?

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pianopain12 | @pianopain12 | Sep 18, 2021
In reply to @jelizabeth "Thank you for this post. Your experience with arachnoiditis sounds a lot like mine. I also..." + (show)
@jelizabeth

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.

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My heart truly goes out to you. Cauda equina syndrome is particularly terrifying and life-altering. I marvel at the strength of others and how they still rise above the suffering to seek help. I wish you safe journey and safe passage through this difficult time in your life.

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1 reply
pianopain12 | @pianopain12 | Sep 18, 2021
In reply to @c_edward "Possible Clue........While researching myelograms I came across 'arachnoiditis' for the first time. Now a few years..." + (show)
@c_edward

Possible Clue........While researching myelograms I came across 'arachnoiditis' for the first time.

Now a few years back I had a series of (3) epidural steroid injections as treatment for pain caused by fused C4-5 vertebrates having "came loose". Very shortly afterward I began to live in constant pain like I never had experienced....never knowing why but thinking it was nerve damage. Two EMG's and both came back negative.

Today I read two articles, one on WebMD and the other on Spine Universe (this site does not allow me to post links - I may try again in a few days time). Each states "....there is a concern that preservatives found in epidural steroid injections may cause arachnoiditis." Arachnoiditis may in part, full, or not at all be my condition but the information in these articles so closely mirror my symptoms and struggles it's scary. So I'm on a journey now, to see IF it is probable the epidural steroid injections I received contained preservatives and the possibility this caused my condition.

I hope this information will be useful to you in some way and I hope you find significant relief. I will post any findings.

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Wow. The idea that preservatives in epidural steroid injections may cause arachnoiditis is terrifying. Epidural spinal injections are offered so commonly to people who have severe back pain. I have had one TFESI injection. Cancelled my appointment to have another one last week. Now, I am so glad that I cancelled. Of course, scientists can't determine whether or not the preservatives are responsible for Arachnoiditis! The problem there is sort of a "chicken or the egg" question. The people who get the injections are already in great pain. They have the injections and have more pain. The doctor sighs and says, "Well, they don't always work, and they don't work every time..." How can it be possible to separate the pain, before and after? One can always blame an injection "that just didn't work" on continued or increased pain. This is really a conundrum and a problem for patients who are suffering and can not get any answers!

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cwallen9 | @cwallen9 | Sep 19, 2021

I know for sure that a cervical steroid injection (with Kenalog) caused my severe, painful neuropathy. I had bad neck pain, but no neuropathy before the shot. The neuropathy started immediately after the shot. I have not found a doctor who is willing to state that the shot caused my neuropathy, which is very frustrating. I believe that I may have arachnoiditis of my cervical spine.

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2 replies
kenyalama | @kenyalama | Sep 20, 2021
In reply to @cwallen9 "I know for sure that a cervical steroid injection (with Kenalog) caused my severe, painful neuropathy...." + (show)
@cwallen9

I know for sure that a cervical steroid injection (with Kenalog) caused my severe, painful neuropathy. I had bad neck pain, but no neuropathy before the shot. The neuropathy started immediately after the shot. I have not found a doctor who is willing to state that the shot caused my neuropathy, which is very frustrating. I believe that I may have arachnoiditis of my cervical spine.

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You should find a doctor who is willing to order an MRI w/wo contrast. It is the only way you will confirm that diagnosis
As one neurologist explained to me : your nerves are all clumped up
That is the way my doctors at the Mayo Clinic diagnosed it
Until then no doctors wanted to order the MRI with contrast
Good luck to you with all my heart !

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1 reply
cwallen9 | @cwallen9 | Sep 20, 2021
In reply to @kenyalama "You should find a doctor who is willing to order an MRI w/wo contrast. It is..." + (show)
@kenyalama

You should find a doctor who is willing to order an MRI w/wo contrast. It is the only way you will confirm that diagnosis
As one neurologist explained to me : your nerves are all clumped up
That is the way my doctors at the Mayo Clinic diagnosed it
Until then no doctors wanted to order the MRI with contrast
Good luck to you with all my heart !

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Thanks. I did just get an cervical MRI with contrast. I hope it will show something. I think it is hard to see Arachnoiditis in the neck area, even with an MRI with contrast.

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janie6696 | @janie6696 | Sep 20, 2021
In reply to @cwallen9 "I know for sure that a cervical steroid injection (with Kenalog) caused my severe, painful neuropathy...." + (show)
@cwallen9

I know for sure that a cervical steroid injection (with Kenalog) caused my severe, painful neuropathy. I had bad neck pain, but no neuropathy before the shot. The neuropathy started immediately after the shot. I have not found a doctor who is willing to state that the shot caused my neuropathy, which is very frustrating. I believe that I may have arachnoiditis of my cervical spine.

Jump to this post

My husband went through the same thing. We feel the doc that injected his neck knew something went wrong because he kept him after the injection for quite some time and had a nurse checking his feet every few minutes. Now he doesn't know him. His problems started about an hour after that injection. As assistant to a surgeon to did spinal stenosis surgery on him told me there was no way that injection should have had anything to do with his feet. Now hte has Arachnoiditis - something he will struggle with for the rest of his life.

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