About

Member has chosen to not make this information public.

Pages

Member not yet following any Pages.

Posts (8)

Mon, Jan 7 5:13am · I am desperate to find a dr who treats arachnoiditis. in Brain & Nervous System

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.

Jan 15, 2018 · I am desperate to find a dr who treats arachnoiditis. in Brain & Nervous System

I’m sorry you too live with this terrible disease. I have chased everything possible and spent most of my savings looking for a solution. After many doctors and crooks, they’ve come close to killing me which made me realize I need to be careful who I trusted. Do not go anywhere near Mayo Clinic and will leave it at that.. I finally found a doctor in Manchester, TN (Dr Newton) who implanted a pain stimulator. This is the only thing that will help stop most of the pain because it’s not dumping drugs into your system that won’t help damaged nerves. With a pain stimulator, you control vibrating pulses that stop the pain from going to your brain. You will still have to take lower doses of pain killers but nothing like you were on before. There is also a herbal alpha lipoid acid at 600 mg over the counter taken 3 times a day at 2 each time that is a miracle worker helping with pain. I wish you the best in your pursuit for a happier life. Please ask me any questions you would like.

Pam

Jun 14, 2017 · I am desperate to find a dr who treats arachnoiditis. in Brain & Nervous System

I’ve had arachnoiditis since 2012. It has been a tough fight and doctors that have any idea how to help are almost impossible to find. I finally found a doctor that wasn’t just saying they knew what the disease was. He actually does. He implanted a pain stimulator which is helping quite a bit. He’s in Tennessee so not real close to your location. Do not let a bad doctor implant a pain pump. They are only making money off of you and not trying to help That isn’t for our disease. I hope that helps.

May 17, 2017 · I am looking for a doctor in NC that treats patients Arachnoiditis. in Chronic Pain

I only know of a doctor I'm going to who is in Manchester TN. Like you I was very confused by the diagnoses and almost every doctor in my area had no clue what it was so therefore treated me like I was crazy. They kept telling me I was imagining things. It was very frustrating. It is a terrible disease and so painful doctors don't understand. I recently had spine stimulater implanted which is designed for nerve damage and currently working on getting it set right. Don't let anyone talk you into a pain pump because that is not for our disease. I hope this helps some. Good luck in finding someone to help you. 

Mar 28, 2016 · I am desperate to find a dr who treats arachnoiditis. in Brain & Nervous System

By reading quite a few blogs, sounds like I need to go to California. The doctor people are discussing sounds great. I ended up with Arachnoiditis after they found an infection in my spinal fluid. I used to get back injections as often as every 2 months.

Mar 28, 2016 · Cauda Equina Syndrome in Brain & Nervous System

I have cauda equina syndrome and it’s awful. Doctors didn’t care or handed me huge bottles of “stuff” to drink, stomach trials, Etc. I finally found a great drug called hyoscyamine sl 0.125mg along with milk of magnesia 2xs a day and both started working. Now need the Arachnoiditis fixed and I’m good. Lol!!!

Mar 28, 2016 · I am desperate to find a dr who treats arachnoiditis. in Brain & Nervous System

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.

Mar 28, 2016 · I am desperate to find a dr who treats arachnoiditis. in Brain & Nervous System

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