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 am trying to find a Dr. in the Los Angeles area that knows about and treats arachnoiditis. I have had this foe 6 months after a botched epidural. I am in alot of pain, have seen several Drs , am getting no help. There are not alot of Drs that even know about this awful condition. Any help would be appreciated.

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@carolinapearl53

I have been suffering from this problem for about 8 years now. My disability lawyer was fantastic. The judge we had was so understanding. But, to treat this condition is to say the least, hairpulling mad. But, I found an awesome pain management doctor that is god sent. I went through several before finding him. I wish you luck in finding relief and if you need to vent...please feel free to contact me via this website.

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Hi... Who is your attorney? I can't seem to get anyone to take my case. Also I don't know where you live, but what is pain management doing for you?

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I am so sorry you are going thru all the problems with your back and plus no one to help. I live in Beaufort, SC. I found my pain management doctor by luck. He has a practice on Hilton Head Island which is an hour away from me. I had so many injections, and finally he decided that I have a MRI and thats where it was found. He took so much time trying difverent meds and we finally settled on the combination of pain meds and pain patches. While I still experience some pain, it is tolerable. My doctor has since retired, the new doctor has the same patient care as my doctor did. The name of the doctor is Ryan Hill. He has 2 offices, one in Bluffton, SC and on the island. Telephone number is 843-757-6744. I urge you to try and set up an appointment with him. Good Luck.

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@meri91364

I am trying to find a Dr. in the Los Angeles area that knows about and treats arachnoiditis. I have had this foe 6 months after a botched epidural. I am in alot of pain, have seen several Drs , am getting no help. There are not alot of Drs that even know about this awful condition. Any help would be appreciated.

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@meri91364 Hello. I wanted to share this link for Arachnoiditis Hope which is in southern California. You could reach out to them and perhaps learn from other patients in the area. This is their page on helping the condition.
https://arachnoiditishope.com/physical-measures/

You may also want to consult a physical therapist who does myofascial release which is a type of massage like physical therapy. Here is our MFR discussion. https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

You can search for a MFR therapist at this link. http://mfrtherapists.com/

You may be able to connect with others in these discussions about arachnoiditis that can be found in the Spine Health group https://connect.mayoclinic.org/group/spine-health/

You may be interested in these discussions:
– Arachnoiditis https://connect.mayoclinic.org/discussion/arachnoiditis/
– Arachnoid Cyst https://connect.mayoclinic.org/discussion/arachnoid-cyst/

I'm sorry you are suffering. I had one epidural in my neck that caused me problems and I said no more. I am a cervical spine surgery patient. It is hard to live in constant pain. Have you heard of myofascial release therapy before?

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@meri91364

I am trying to find a Dr. in the Los Angeles area that knows about and treats arachnoiditis. I have had this foe 6 months after a botched epidural. I am in alot of pain, have seen several Drs , am getting no help. There are not alot of Drs that even know about this awful condition. Any help would be appreciated.

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Hello @meri91364. You will notice that I have moved your post into an existing discussion on Arachnoiditis to continue the conversation with members. I see you had previously commented on this discussion so will be familiar.

@jenniferhunter has also been so kind as to share some information with you and in addition, wanted to also share the following link which may be helpful in your search as well: https://arcsology.org/doctors-tribute/

Are you hoping to stay in the LA area for care and treatment?

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Looking for a doc in Phoenix or Scottsdale az

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@sashadeltop

Looking for a doc in Phoenix or Scottsdale az

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@sashadeltop Welcome to Connect. I found this list of neurosurgeons at Mayo in Phoenix, and it continues to a second webpage. Here is the link: https://www.mayoclinic.org/departments-centers/neurosurgery/sections/doctors/drc-20117103?locations=Phoenix%2c%20AZ#9f586ff3a6124d46a257480316484847

In order to get more specifics on any of these surgeons or to seek an appointment, please contact Mayo Clinic with this link that can be used for any of the campuses. http://mayocl.in/1mtmR63

Have you been seen by a neurosurgeon before?

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@sashadeltop

Looking for a doc in Phoenix or Scottsdale az

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Yea I need to find one that deals with arachnoid cyct or arachnoiditis

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I’m looking for a doc to diagnose me I have all the symptoms of aa I love in Phoenix az

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@sashadeltop

Yea I need to find one that deals with arachnoid cyct or arachnoiditis

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@sashadeltop I had also pulled up this search for surgeons listed who treat arachnoid cysts, and there are some at Mayo Rochester. There could be some in Phoenix, so it may be worth asking. Here is the list I found for Rochester:
https://www.mayoclinic.org/search/search-results?q=arachnoid%20cysts

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