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Thread: Parry Romberg Syndrome

  1. #11
    hi Jody ... i think i found my doctor finally(a neurologist)... after all those arguments("fights") and 3 bars of chocolate ) i managed to talk to him the right way but i guess i got him by surprise with all my symptoms but I'm confident that he will do the right thing.....I'm much better thanks to my psychologist and i wanted to thank you for your answers and support. I wont give up with the surgery maybe I'll manage to get there and I'll wait and see what happens now.Thank you

  2. #12

    Parry Romberg's- Dr. Siebert in USA

    Hi Noko,
    I have read your story on "the Romberg Connection" and am pleased to see that you have found Dr. Siebert. The name of the surgery is Micro Vascular Free Flap Surgery. Also known as a "tissue transfer". Dr. Siebert is in New York and also Madison, Wisconsin, both in the USA.
    I believe the cost of the surgery is somewhere around $100,000 US dollars.
    My son is having the surgery with Dr. Siebert in about 2 1/2 weeks. We live on the west coast and will have to fly across the country for the surgery. Dr. Siebert is the "real deal" and we are so happy to have found him!
    We, too, have searched for organizations to help us with the costs, but so far we have not found anything. But we will keep trying and pass on anything we learn!
    Hang in there, you are on the right track. Your disease is real, but so rare! Only about 500-700 people in the whole world have it, so chances are your doctors have never seen it! I believe I know more about PRS than my son's pediatrician! But you are not alone and be secure in the knowledge that you are right, you have a real disease and you WILL find help! You are a strong young person who has a lot to look forward to!
    God Bless,
    Terri
    Mom to Hank, age 7 with PRS

  3. #13
    Thank you Terry I'm still looking for funding's if I may say so but nothing yet, still hoping.

  4. #14
    noko, I realize that you're only trying to gain knowledge on the internet, but a lot of doctors everywhere get 'over protective' of their status & jump to the wrong conclusions when presented with internet information. Knowledge is power, and doctors want to have all the power. Don't be afraid of writing down your questions using your internet information, but also don't tell them you've gotten it from the internet, that might help. And please don't take offense - I'm 'thin skinned' (I get easily upset) when people say things sometines, I take them the wrong way, and you may be doing the same - your shrink should be able to help you with that - like I said, please don't take offense, we're just trying to help.
    Hope I'm not out of line.
    God bless you & my prayers are with you.
    Rev Coleen

  5. #15
    noko - haven't heard from you in a while - pm me, ok?

  6. #16
    noko,
    Print out the info you're getting from the internet - usually I say don't, but it looks like you need to share that info with doctors who don't have it. Please don't give up.

  7. #17
    Hi Noko honey know that you’re not alone, and yes, Parry Romberg is real, and there are others like yourself, and I’m one of them. As I read your story oh how familiar it sounded, the hunt for the right Dr., the pain, the disbelief, and moreso folks not believing that, the pain is real. I was attacked with this disease 8yrs ago along with Lupus, Rhuematoid Arthritis, and a couple other things just to name a few. The sad part about it is that, there are NO known cures however there is pain relief, and for you keep on seeking the right Dr. You may have to come to America, get a sponserr, and continue writing letters until someone says the right thing. I pray that my response is the beginning of hope for you. My journey with this disease started very late in years for me, I was 39 when my face began to deteriorate, and they thought it was from the meds that I was on for the Lupus but, years later we found out that it wasn’t the case. I found out about PRS at a clinic in Boston NY called Lahey Clinic, and they were loving, kind, and understanding. Remember always that people are afraid of, what they don’t understand, and don’t have answers to. Please feel free to ask any questions, and I’ll do my best to answer or at least guide you in the right direction. Be encouraged, and know that you are now well on your way to finding what, and whom you need to help you along his tedious journey. However I will suggest that out of all that has helped me along the way it’s been, God, and, my relationship with Him and, without Him, I would have lost my mind a long time ago. I too am a survivor of double brain aneurysms and, the Dr are now not sure if in fact it was from one other thing or, PRS. Just keep records of every sign, and symptom. Stay Encouraged, Your New Friend !!!

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