@dkhouri Have you tried Boston General.. very good Clinic/Hospital..

@dkhouri

I'm so sorry to hear that you're suffering and can't find help. I can definitely relate to you. I've been in a similar position for 17 years but have recently found help!! I'm so happy to be able to pass this info. on to others.

http://arachnoiditishope.com/ (Dr. Forest Tennant)

This site provides a ton of info. and it's so validating and eye opening! You can print some of it out to bring to your current doctors for consideration. It also provides a self help protocol. If you have arachnoiditis then this is where you need to be. You can also contact Dr. Tennant's team with questions.

https://intractablepainsyndrome.com/ (Dr. Forest Tennant)

Anyone that is in pain should visit this site! Again, it provides info. for you to bring in to your current doctors, a self help protocol, and you can contact Dr. Tennant's team with questions.

https://www.frankfeigenbaum.com/ (Dr. Frank Feigenbaum)

Dr. Feigenbaum is going to perform surgery on my Tarlov cysts. He specializes in Tarlov cysts but does a bunch of different procedures. I'm pretty sure he would also be able to take care of arachnoid cysts!

https://www.hypermobilitymd.com/medical-services (Dr. Linda Bluestein)

I have been seeing Dr. Bluestein for a couple years now. She is an integrative pain specialist and anesthesiologist. She specializes in hypermobility (EDS) but also treats patients from all over the U.S. for a wide range of pain. When you hit this link, scroll down to the bottom of the page and click on "Office Policies And Procedures". There you will find her rates and contact info. She does not accept any kind of insurance so you will have to pay yourself but it's so worth it. This is a doctor you will want in your corner. Her expertise and understanding of your condition will amaze you!! You can see her in person or via televisit. She knows Dr. Tennant whom I mentioned above.

** Dr. Tennant and Dr. Bluestein both recommend palmitoylethanolamide (PEA) for pain. I started taking it about 3 weeks ago and I can already feel a difference in the hip pain when I stand up. You will need to be patient because like so many other supplements, it will take 3 to 6 months to feel the full effects. It is supposed to be as effective, if not better than opioids! Below is a link to an article about PEA that I came across. If you don't want to read all the scientific stuff then scroll down to the part where it talks about the results it has in their patients. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3500919/

I hope this helps you an anyone else that comes across this post! Take care everyone!

Terri