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Back From Eds Specialist


Maxine
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Hi,

I'm back form the EDS specialist. I have been out of commission for a while---so posting has been a bit limited. I went to an EDS specialist at the Cincinnati Childrens Hospital. I saw a geneticist--(Dr. Wenstrup), a cardiologist---(Dr. Meyer), and two genetic counselors---Erin, and I can't remember the other name, but both were really professional and compassionate. Dr. Wenstrup was very focused, and to the point---and respectful. Dr. Meyer was very soft spoken, and very compassionate and caring---very validating about my personal health issues, and all the pain it has caused in my life.

When Dr. Wenstrup first walk into the room he asked me---"why are you here"---then all the blood drained out of my face. It turned out that this must be the way he starts out---because the rest of the visit with him was great. He was very focused, examined me, and asked several questions. We went over some of my medical history, and when the cervical/cranial instability, and other spinal instability was mentioned he got real serious, especially when I told him that a NSG told me I need to have a cervical/cranial fusion. He told me I should have this done. I was very surprised, as this is something that is usually dismissed by other physicians and NSGs. I told him I'm afraid to have the surgery, and he said "I'm not going to tell you not to have the surgery".

We discussed how important it is to exercise---LOW IMPACT ONLY. I'll need to tone my muscles to prevent further problems. However, after the spine instability was discussed, he said no physical activity until the spine instability is corrected. He said I just need to do what needs to be done. I am diagnosed officially with what was formally EDS type III, and now known as hyper-mobile EDS with fragility of skin and vascular involvement. I also have samll fatty type tumors on my lower legs, and arms----which is part of the EDS.

He said there is no cure---and that it will get worse with age. It's genetic, and it was passed on to me by one of my parents. I told him that they didn't show signs of it, and he said one of them could have a very mild case without any complications, and that I got a more severe form of it.

Dr. Meyer the cardiologist was very soft spoken, and compassionate, and explained a lot to me how idiopathic this can be-----the POTS---EDS ect. He told me the pressure on my brain stem from the retroflexed odontoid bone--C-2, the chiari--(Small posterior fossa), and the instability can cause issues with my heart as well. He was very understaning of my confusion with all this, and explained to me that this is very confusing---and that i'm not alone in this.

The genetic counselors, and the nurse where very nice---and also very understanding about the ignorance I face continually from certain medical professionals.

I really needed this visit to go well, and I'm glad it did. I'm not happy about having to deal with the reality of EDS along with my other problems, but it's nice to be taken seriously. The pain has been severe lately, and spreading to my middle back. My POTS symptoms have also been affected, and not much of activity out of me----just completely wiped out. Just picking out a half gallon of milk out of my refrigerator was crazy---I could feel tiny subluxations from my wrist, shoulder, and my neck/cranium area.

Sounds dramatic---but it's real-----more real that I'd like it to be------------ :) The combo of all this, and the myelopathy has made it difficult to sit up, hold my head up---or walk long distances. Not a lot of fun these days----but still glad I can bathe and dress myself---and function around the house a little. Social life is the pits----getting out is hard on me---can't plan anything lately.

Maxine :0)

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Maxine, I am so relieved that you've finally gotten some valid answers. It's been a very long road for you just to get to this point, but I hope that from here on you'll be able to get more reliable treatment. Take good care of yourself. Laura

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Thanks for the replies and support-------- :)

I really feel confused-------and scared about my quality of life going down the tubes.

I'm trying to hang on---------although it's been hard due to a terrible experience this summer ---on top of what I'm already dealing with. You would think at some point I would stop being shocked------but getting stalked on an internet forum----and by a medical professional-------or perhaps a "medical professional wannabe" to maliciously discredit me in regards of my SSDI claim. If they only had a clue of the seriousness of all this.

Believe me---you don't want to know the rest............

I never intended for this to happen--------the physical limitations are hard enough to face, and to accept the reality of it all. I don't like feeling like I'm going to fall down---the dizzyness, the feeling of walking through waist high water or sand, or the problems I having sitting up---or holding my head up-------nor do I like the rest of the crap I deal with every day. Filing for disability was a very difficult decision---and very sad.....

I can't imagine what is in the mind of someone who would do something like that to someone. It felt like the bottom fell out for me........

I hope and pray none of you ever get stalked like that.........

Take care,

Maxine...........

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Hi Maxine,

You have had so much going on in the last year or so...somehow I am hoping soon the puzzle pieces will fit together more and more medically. Just wish you'd picked maybe a 100 piece puzzle (you know like the kid's ones that are little mermaid or cute dogs?) rather than what seems to be a double-sided 5000 piece puzzle!

Okay, aside from the humor...thanks for checking in with us and letting us know where things are at with you medically and otherwise...it all sounds very overwhelming and I just wanted to let you know I was thinking of you and missing you.

Hugs,

Emily

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