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Just to update, I have an appointment with the Marfan/Ehlers Danlos Clinic in Cincinnati in late March. I figure no clinic is going to be close to where I live, so I decided to go there. After reading various EDS websites, not many people have had valve surgery. Those with the Vascular Type have...

Just diagnosed with EDS Maryka, Thanks so much for all of the support you have given me! I really appreciate it! I go in the hospital tomorrow morning to get off my Coumadin and onto Heparin. My cardiologist doesn't believe in using Lovenox, so I have to go in early prior to my surgery. My...

Just diagnosed with EDS Maryka, Fortunately, my Mom and two sisters have never had the prolapse, "celes", or hernias that I have had. My Dad is the one that I got EDS from, I believe. He has had an umbilical hernia, inguinal hernia and aortic and mitral valve replacements. All within the last...

Just diagnosed with EDS Maryka, Several years ago I had a hysterectomy. The surgery is an abdominal procedure to correct a pelvic floor prolapse. I had a less invasive surgery three years ago and it didn't hold. That's why I got to researching Ehlers Danlos. I pretty much had most symptoms...

Just diagnosed with EDS Betty and Lily, I was fortunate to be diagnosed on my first appointment with the rheumatologist. Especially when it may take some people a long time to get a diagnosis. My rheumatologist's nurse called me today and said that they faxed the referral and records to the...

Just Diagnosed with EDS Just Diagnosed with EDS Maryka, I've done alot of research over the weekend. I found an EDS group on Facebook. I made contact with someone who has gone to the Marfan/Ehlers Danlos Clinic in Cincinnati. It's part of the Children's Hospital at the University. But they...

Just diagnosed with EDS Al, Thanks for checking with your friend. I appreciate their advice. I had an appointment with my cardiologist and he wants me to go to Cinncinati or try Little Rock for testing. I hadn't thought of Kansas City. That's about 3 hours from where I live. I'm having...

Just diagnosed with EDS Maryka, Thanks for repsonding. Since Marfan's and EDS are so closely related, I really wonder which one I have. When you read about both, their charactertics are almost overlapping. But my rheumatologist said that I have EDS. As I told Julie, I worry about my...

Just diagnosed with EDS Julie, I'm sorry to hear about your sons. I'm sure you have a good doctor that will keep a close watch on them. I can only imagine how scary that must be for you and your family. My mitral valve has been replaced already. Luckily, I already had a scheduled...

I went to a rheumatologist today and based on my history, past surgeries and characteristics, was diagnosed with Ehlers Danlos Syndrome. He wasn't able to tell me which type, because I have characteristics of more than one type. He suggested I go to a hospital in Cincinnatti that specializes in...

Bill, I was so shocked to check the new posts for today when I read about Valerie's passing! I'm really new to this forum, but was looking forward to hearing from Valerie once she was out of the hospital and on the road to recovery. She was so young. Something like this just doesn't make any...

Thanks for the information everyone! I appreciate it.

I was wondering if someone could give me an idea of how much QAS charges for the Coaguchek XS monitor? Also, the cost of supplies? I'm still waiting to hear from them as to how much I will owe after my insurance pays. Online, it says they can cost about $2500 plus the cost of supplies, which is...

Catwoman, That's very interesting. I'll have to wait to see what happens when I get a monitor with how my cardiologist will handle everything. But, that's a good point to know. Thanks,

Best wishes Valerie! I'll be thinking of you and your family.

Twinmaker, I have had similar symptoms myself. One time I was walking to my office through the parking lot at work and boom out of nowhere, it was like I was being pulled to my right as I was walking. Everything was spinning, I too got nauseated. I just had to stand there and keep from falling...

Cris, Wow. I guess it's just that I'm a newbie with all of this home testing. I just don't see my cardiologist cutting me loose with a monitor. Especially since I will be his first patient with one. I don't live in a large area. Maybe in time he will. But I'm thinking they'll still want me to...

Thanks for the great info. I'm going to get one of those charts and hopefully without stepping on my cardiologist's nurse's toes, show it to her and see what she thinks. So do you do all your dosing yourself without contacting your PCP? Thanks,

BDMc, My cardiologist's office was the one who faxed the form to QAS over a week ago. His office supplied my diagnosis and all pertinent info. The rep that was in their office just recently had said the process is pretty quick. I checked with my Dr's nurse today, and she called them for me...

Kristy, Your lucky to have been in for only 5 days. Like I had said, I was in for 10 days before they let me go home with my last surgery. That includes going in 2 days prior to the surgery. They wouldn't let me home until my INR was in range. It seems like they had me start back on...