Any Experiences With Johns Hopkins?

[Maxine]

Hi,

I was wondering if any of you have had experiences with John Hopkins. I would primarily go there for EDS issues, and the CCI--( cervvical/cranail instability). This instability is a mechanical issue, and it can not be imagined as the surgeon at the University of Mich. would like to think--------(I have nick named him "almighty surgeon")----------I can be really tough when I need to be, and with him I was.......

Anyway, I do have two surgeons who confirm the instability as you know, and another doc form NIH who did the EDS study.

Lately I have been dealing with intense sharp headaches on the right lower portion of my skull. They have been more consistant, and disturbing. I get a bit dopey and my speech slurs the worse they get, and I also get full body weakness. I told you all about the day I fell off the bottom basement step. I don't remember what happened.

Three things: Cervical/cranial instability, bulging right vertebral artery making up for the missing left vertebral artery, and poor vascular tone from the EDS---(stretchy veins). This doesn't sound like a good combination. Especially since these weird headaches. My PCP put my colonoscopy on hold because I'm not stable, but with my family history of colon cancer we can't put it on hold too long. Of course I've had the really low BPs, and increasing orthostatic intolerance too.

You all kind of know the drill with me from previous posts--------I was just wondering if any of you have had positive experiences with the neurology or connective tissue departments at Johns Hopkins?

Thanks for any input---

Maxine :0)

[Dizzy Dame]

I saw a neuro at JH when I was tested for Myesthenia Gravis. He had a horrible bedside manner but in the end he helped me, however, you'd probably be in a different department anyway. Overall the hospital has a very good reputation, I had no complaints.

Hope that helped a bit,

D

[juliegee]

My son had a great experience at Johns Hopkins....but he saw pediatric folks and you will probably be seeing the grown-up docs. Mack's ped, Dr. Peter Rowe, is among the first to link autonomic issues with EDS. He's also sent our entire family for genetic connective tissue testing. So, if they are connecting the dots with the kids, I would safely guess that you'd be in great hands with the grown-up docs. I'll keep you in my thoughts. Be sure and let us know how it goes.

Julie

[futurehope]

I live in Baltimore, and Dr. Rowe had no interest in seeing a "grown-up" with POTS, but he was very nice on the phone. If there IS a doctor at Hopkins for POTS (besides Dr. Rowe) could you let me know? I was evaluated for myasthenia gravis by Dr. Chaudry there. As for the EDS issue, I know nothing about Dr's at Hopkins.

[goldicedance]

Funny you should mention this.

Someone recently told me about Hopkins' Center for Marfans Research and a Dr. Dietz (spelling). He has done pioneering research on the use of an Ace-inhibitor in the treatment of Marfans and aortic rupture. The drug is called Losartan. This person thought his office might also be establishing an EDS data base.

Hope this is useful to you.

[Maxine]

Thanks for the replies and information----I really appreciate it . The woman that I spoke with on the phone said they are very familiar with EDS, and it sounds like this is something that has taken off more recently at Johns Hopkins---------as far as dealing with complications related to it, verses actual diagnosis. I think they have been familiar for a while with Marfans and EDS, but I think more recently with EDS.

I posted a link on this doctor.

http://humangenetics.jhmi.edu/index.php?op...9&Itemid=52

When I mentioned the enlarged right vertebral artery, she really tuned in more, and said to call my insurance company to make sure I'm covered, and then call back and begin the process. There's a number of things I have to do, including filling out a form with basic information, to sending my records. I'm not specific on details yet, as I will just be getting the form e-mailed to me tomorrow.

I was told about this artery being enlarged, and it pressing on my brain stem since 2002 when Dr. Heffez found it when I went to Chicago to have the testing done to see what was going on with my neck. He did surgery to remove two badly herniated discs in my neck on c-5,6, and 7, fuse it, then add a plate. After that, just like dominos, my neck and spine started to begin it's process of dessiccation. This is EDS at it's finest.........

Dr. Heffez said it may be necessary to have surgery done at some point to open the area up more around the right vertebral artery to get the pressure off the brain stem. However, this was a couple years before I started having consistant instability in that area, and the EDS diagnosis. I also have a small posterior fossa adding more pressure in the area----(I guess it's considered chiari-0), no herniation, just a tight fit and packed rather neatly in the confined area. Enlarging this area becomes much more complicated when EDS is in the mix. Doing this without a cervical/cranial fusion would make the area even MORE unstable, and a good possibility of cranial settling which is very dangerous.

After much research on EDS, and believing in my instincts that I have it, I finally got the official diagnosis from Dr. Wenstrup at Cincinnati Children's Hospital. He's a geneticist who specializes in EDS and other connective tissue diseases. Then Dr. Tinkle, another geneticist confirmed the diagnosis again. Finally Dr. Mcdonnell from NIH who is still doing the EDS/connective tissue study changed my EDS type to Classical with hypermobility and vascular involvement. The first two geneticists also said I had vascular involvement, but first diagnosed me with the hyper mobile type.

It's difficult to say what will happen, or if I'll even be going to John Hopkins. If my gut feeling tells me it's a good thing I'll go. I won't be subjected to any more shenanigans--------------------I just want the best possible care, AND some respect for what I'm dealing with daily.

Maxine :0)