Any Adhesive Arachnoiditis members here?

Dear Lisa, I´m not sure if I let you know that I followed your advice and checked with Mayo Neurology in Jacksonville again and was given an Appointment for August 14. Am awaiting the packet of information. So hopefully am on my way--anyway. I worry because of the two conditions (Adhesive Arachnoiditis diagnosed in 2012) and Normal Pressure Hydrocephalus, tentatively diagnosed in May. Only a Lumbar Puncture can confirm NPH, but this is "counter-indicated" with AA. So can only hope and pray Mayo will steer me in the right path. I will do anything they suggest. I live in Sarasota, a 4 hour drive from Mayo Jacksonville, and have two little dogs to leave behind, which breaks our hearts.

Jennifer Hunter, you were amazing, and I am so grateful to your encouragement. I think I owe you a longer thank you, though. My fears stem not so much from surgery but from the "counterindication" of both conditions, and I don´t worry about a shunt if that´s all that can be done. I just worry a little about leaving my husband, who is already dealing with my idiosyncratic behaviors and am sure wishes this entire thing was resolved.

John, as for diminished cognitive functions, it is very, very rough. I barely have two or three hours max in which I am functioning--can´t follow recipes, can´t do much cooking, can´t plan for the day from the moment I drag myself out of bed. The worst is not being able to make lists, or even write, although I must say I can type better than write by hand. My train of thought disappears on me when on the phone, word-finding is a hoot, and everyone has to just tap their fingers waiting for me to come up with the right descriptive word. I´ve been a relatively high-functioning geriatric social worker for many years, with a huge bilingual caseload. I had to retire in 2013 because I feared messing my clients´ lives up. And I miss this part of my life terribly. So, John, I don´t do well with the loss of cognitive functions. I don´t read the newspaper anymore, or read anything at all. I watch the news and stew and get angry at our nation´s situation. So that´s not so good, either.

Don´t want to bother you anymore with this, but since you asked 🙂 :)......It´s just not a life. Even if I have the shunt put in I don´t have high hopes because of the AA....but I do want to be able to WALK outside again! And it appears that certain symptoms will be helped and others not.

Hey, you all, have a good Sunday. And Lisa and John, thank you so much for your support these past few days. You´ve certainly given me hope. Now if I could just figure out how exactly Mayo Connect works so that I can get replies to all who have written. Big hug to all,
Joan

I don't know if you still belong to this site. I am also a member. I also have AA, caused by Spins Surgeons, Neurosurgeons, Procedures. I found out sadly the hard way by not asking questions and researching. The doors are closed to us. Is it because the Medical Community is so powerful? May I asked how are you doing now? Did you find anyone to give you relief from the pain?

Does anyone else suffer from this.

Does anyone else suffer from this.

In constant pain searching for help in OKC

Hi. My name is Dianna and I have been diagnosed with AA for about 6 years now. I live in South Carolina.
I found a wonderful doctor on Hilton Head, SC. He has been working with me and we finally found the right combo
of drugs to treat my AA. I know there is an opioid epidemic going on, but with the right doctor monitoring me, I have led nearly pain free life. I suggest you find the right doctor for your husband. This disease is terrible enough to live with, you should have a doctor that will listen to and help you with your pain. Good luck!

Who is your doctor?

Hello @uonlylvonce2 and welcome to Mayo Clinic Connect! I can see you are interested in hearing back from member @carolinapearl53 with regard to information on her doctor.

In the meantime, are you willing to share your personal experience with Adhesive Arachnoiditis?