momma - CowgirlCasanova (Heather) uses Johns Hopkins. I'm sure that she would probably be willing to give you a first hand account of some of the things there, if she hasn't already. She's awesome! I know that there are others on here that have also used that hospital and have had very good things to say about it, but I can't remember who they were.
I can't remember if I've talked to you before. How old is you daughter, if you don't mind me asking? I've had the headaches and visual issues since I was 7, got diagnosed at 28 and I'm 31 now. Everyone of my docs are pretty sure mine was caused by a concussion that I had when I was 7 that caused a TBI (traumatic brain injury) and fractured all the way through my skull. I've been on Diamox (was allergic to it), now on Topamax and had an LP shunt placed in April. Just trying to give you some history in case you have more specific questions any of us can answer.

Hope you don't mind me volunteering you Heather, but you are the only one that I can remember right off that's been there.
I would love to be able to go there, but I live on the west coast. :(
Brandee

My daughter is 31. although she has had headaches of and on since she was a teenager but they got worse Sept.'09. We live in the Philadelphia area and anne was working in Florida at disneyworld when she first started with PTC. After several months of getting nowhere in florida she came home and was diagnosed. she was stgarted osn Diamox (horrible drug) then topamax and lasix. when her Paps resolved her Neuro decided that she no longer had PTC but severe migraines. After 3 years of getting nowhere she finally had the second LP wheich was 30. Original was 35. she tried twice to go back to work but was not able to continue. the disney company has been wonderful to her. Twice she was given a year medical leave (which kept her insurance). she
applied in June for SSD and was approved the end of August. When she resigned from disney they told her that she was welcome to return if she is ever able. She has not had one day in 3 years without a headache and my prayers are that finally she will get the care that she needs.

Brandee - I do not mind one bit! I am glad to see that talking about the clinic at Hopkins helped her reach a decision! That is why I mentioned it all! Thank you for remembering, girl!

Momma - Do you happen to know the name of the neurosurgeon that your daughter is going to see? I would love to see if it is the same one I saw!!! (The whole facility is fantastic, but I would love to compare notes!)

OMG, your poor daughter! 3 years of headaches with no relief! I can't even imagine! Well, I'm so glad she's finally able to get in and I hope this is the answer to some well deserved relief for her.....I know Oct. is a little ways out but please keep us posted on her apt. and how everything goes :)

HUGS

Kim

cowgirl My daughter was given an appointment with a surgeon, just a NO and a neurologist. we are so looking forward to these appointments

Do you know the names of those doctors? Sorry to be a pain! If you ended up with my neurologist and NO, I feel that she is lucky! :)

Sorry, I don't know the names. They are going to send paper work and I'm sure that will give me names

Don't apologize!!! I was just curious! If, by some chance, get the neurologist Moghekar, she is in GREAT hands!!!!! I cannot remember my NO's name at the moment (I saw her a lot in the ER and then she became my outpatient NO as well) but I will find it and get back to you...she has been the most amazing to me. She was as excited to see me feeling better after my last surgery (in February) as I was to be feeling better!

Dr. Moghekar is very thorough, as well as my NO, so I know she will do well, in general, with Hopkins! Also, my neurologist works out of Bayview (another Hopkins campus, just outside of the busy city!) so that will make it easier for y'all if you have to travel down here to see him again!

I'm so excited and happy for her to be going to see Hopkins!!! She is in great hands!!