Cheryl, thinking of you and Anna

You've been on my mind all day. I'm hoping you got some answers today in Chicago.

Sending you much love and hugs.

Me too! I hope the trip wasnt too awful for Anna.
Hugs,
Cindy

A hard day, almost 24 hours straight, but she was a trooper. I'm proud of her.

Anna has been treated by seven neuros, all migraine specialists. Three in Minnesota and four in Chicago. The Chicago neuros were much better, and my hubby and I have been very willing to travel a lot to see them.

A long time ago I was reading an intracranial hypertension forum, and a woman popped in to rave about her Chicago neuro who was helping her get through her pregnancy when she couldn't take Diamox. My radar went up, and I wrote and asked if I could call her. She agreed to that (me being a complete stranger). When she told me about her neuro (whom I had never heard of before), it made an impact on me.

Mishkyn was moving back home to Chicago, and I suggested she see this neuro. She couldn't say enough good about him. We went next. Then I started mentioning him privately to people I knew at Ronda's and to Chiari/IH families. So there are maybe ten to twelve people I know who started seeing him. Yesterday I talked to his nurse, and I shared with her all the names. She had a big smile on her face as she said they are all really great patients.

We have actually seen him (Dr. W) only four times because we've been involved with neurosurgeons more. And I want to say that Dr. W does not prescribe controlled meds for Anna because he doesn't prescribe them for patients outside of Illinois, and we don't need him for that piece of her care. But he is happy to see Anna for everything else.

We had an excellent appointment with him yesterday! He believes Anna has ocular migraine because of her symptoms. He thinks this is going to be an on-going problem for her (that was not good news). She has been on all the heavy hitting migraine preventatives and abortives during the past ten plus years. The situation is grim. She still has vision loss and everything beyond a foot or so is a blur.

He is going to treat her as if she had an autoimmune disorder because she presents like there is one. She is going to start Plaquenil.

He offered to do a lumbar puncture because he feels she still may have IH. She asked if she could have sedation for it. He said he could bring in an anesthesiology service to sedate her for the LP in his office, but all of that has to be arranged. Maybe in three weeks.

Anna is going to see a neuro-op here...hopefully sooner rather than later...but those appointments do not come quickly. You have to wait your turn. They said hopefully next week.

Really and truly grateful for a comforting appointment yesterday with a neuro who is SO very compassionate. Just like Anna's G.P. They are a lot alike. We are fortunate, I know.

Thanks!

Cheryl

Oh, Chery..I'm so sorry to read this about Anna..praying, for her.

Will contiue to lift her up in prayer.

love and blessings,
Greeneyes