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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I'm sorry to hear that your husband is going through the same thing. Did you get an official arachnoiditis diagnosis from a doctor? if so, how did they diagnose it? Through MRI's? Has he found anything to help his arachnoiditis? Do you follow Dr. Tennent who puts out bulletins on how to treat arachnoiditis? Sorry about all the questions, but I am constantly looking for anything that will help.

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@cwallen9

I'm sorry to hear that your husband is going through the same thing. Did you get an official arachnoiditis diagnosis from a doctor? if so, how did they diagnose it? Through MRI's? Has he found anything to help his arachnoiditis? Do you follow Dr. Tennent who puts out bulletins on how to treat arachnoiditis? Sorry about all the questions, but I am constantly looking for anything that will help.

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So are we. He has not had an MRI to diagnosis it yet. We have to go where there is an open MRI because he is so claustrophobic, How do I follow Dr. Tennent? I have a daughter who is a health coach and she has suggested a couple essential oils to use topically. Haven't gotten them yet. I also email a friend who is an md and a naturopath. Not medical world but I am researching all possibilities.

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Go to the Arachnoiditishope.com website. I don't know if his methods work, but he seems to be the only person out there standing up for people with Arachnoiditis and intractable pain. He is retired, so he does not see patients any more. Buprenorphine is the only thing that I have found that helps a little. It is an opioid used to get drug addicts off of opioids. It is hard to find doctors that will prescribe it.

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@cwallen9

Go to the Arachnoiditishope.com website. I don't know if his methods work, but he seems to be the only person out there standing up for people with Arachnoiditis and intractable pain. He is retired, so he does not see patients any more. Buprenorphine is the only thing that I have found that helps a little. It is an opioid used to get drug addicts off of opioids. It is hard to find doctors that will prescribe it.

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@cwallen9, Thanks for sharing Dr. Tennant's site - https://arachnoiditishope.com/. There is a lot of really good information on the website for members dealing with Arachnoiditis - from Medical Protocols, Bulletins, and Newsletters to Success stories from patients.

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@cwallen9

Go to the Arachnoiditishope.com website. I don't know if his methods work, but he seems to be the only person out there standing up for people with Arachnoiditis and intractable pain. He is retired, so he does not see patients any more. Buprenorphine is the only thing that I have found that helps a little. It is an opioid used to get drug addicts off of opioids. It is hard to find doctors that will prescribe it.

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Thank you. I will check it out.

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@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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Please let me know how your appointment goes at Cleveland Clinic. It they are helpful I would like to also seek treatment there. Thank you!

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@pianopain12

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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Thank you so much.

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@janie6696

So are we. He has not had an MRI to diagnosis it yet. We have to go where there is an open MRI because he is so claustrophobic, How do I follow Dr. Tennent? I have a daughter who is a health coach and she has suggested a couple essential oils to use topically. Haven't gotten them yet. I also email a friend who is an md and a naturopath. Not medical world but I am researching all possibilities.

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The essential oil did not work for him. He thought it might be helping slightly but it caused severe tension and agitation. We are investigating other ideas.

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@stoaway

Hello to everyone. I am new to this forum and found it just by chance online trying to do some research on this awful disorder. I was diagnosed with Arachnoiditis in early 2015 and was simply told there is no cure just pain management. Unfortunately I am at my wits end with the pain and discomfort not to mention how it has turned my life as well as my family’s life upside down. Not only was I diagnosed with this disorder I was also diagnosed with Myasthenia Gravis which is just as rare. I am desperate to find a doctor that not only can treat or help me but that is actually familiar with both of these disorders. I was a registered paralegal and have been unable to work in over 3 years due to the pain. Most dsys I cannot even get out of bed. I am tired of dealing with all the issues of taking pain meds with no relief in site. I was an extremely active person, abid boater and scuba diver. Nowadays I can barely even walk. This is a condition that you have to have to know how intense the pain is. Please if anyone can point me in the right direction I will be forever grateful!

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Stoaway I seen your post I to have spinal Arachnoiditis and hereditary idiopathic neuropath I reached out because of talks about a spinal cord stimulator I had placed almost a year ago it helped some but not to the level that I would go get surgery as a matter of fact I’m having problems and having it removed my pedal insert has came loose that attaches inside and is causing havoc right now . This is a downfall to what could happen so now I have pain on top of the pain that I already had in the first place it’s been extreme pain and isn’t going away until they get me into surgery and seems there in no hurry as there is other surgeries in front of me I would think this is an emergency situation as this could cause even more damage to my spinal cord etc. Also when you have one of these depends on the leads you have you can’t get an MRI only x-rays with the one I have only head ct scan . I’m really worried because I can’t move around to much that it might mess me up even more

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@ledgerwp

It was a pain clinic. I had been going to them for 15 years. Things changed after pain pump was implanted ad mistakes were made. Many things happened and the final thing was refusing another back injection which is probably what caused my disease Arachnoiditis. When I said I wouldn't do it, they cut my meds in half, dropped my muscle relaxer and slowed the pump down to almost off so my pain flew up. It goes on and on. Its been a nightmare. I did find help with cauda equana from a urgent care clinic Med they gave me. It's a miracle. <br />
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What kind of med did they give you?

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