You Are Already Beautiful
Parry Romberg Syndrome and Me
My story by Cheryl Rick Klein
I am so happy the Romberg Connection support group posted a page about a surgeon I reffered many "romberger's" to for Facial reconstructive surgery. I first mentioned John Siebert's name when I learned so many people that suffer Parry Romberg Syndrome could not find or choose a reptuable Plastic surgeon. Dr. Seibert was one of about three plastic surgeons that was experienced and compassionate enough to offer procedures, especially the Vascular Flap transplant, which uses your own doner skin, muscle, and fat from a part of your body, in my case he choose my right upper back where my bra strap could cover up most the scar it left. Then he would attach by micro-surgery the newly harvested skin over the "wasted facial" area and attach blood vessels and arteries to mesh the old face with the new doner skin.
Not a pretty picture. I had bolts like Frankenstein holding my face together that scared the crap out of my young children. I had complications part of my new flap died.I had to have another surgery to fix this.
It took over a year for the swelling on my right side to go completely away. To top it off my husband had a affair.
It took a while to heal but was it worth it? My mom who lived to see me diagnosed in 2001, gave me 40,000 dollars and insisted I do the procedure. She was more excited than me but when she saw me in the hospital she commented I looked like I jumped out of a 24th floor skyscrapper.
My mom a year later told me a year later how beautiful I was. She never said those words to me except on my Wedding Day. The first one.LOL.
My dad passed away in 2000 he never knew I was diagnosed one year later.
5 comments:
Hi Cheryl,
I came across your blog when searching for plastic surgeon who is experience with PRS. I too suffer from PRS to the right side of my face. I had the flap transpant surgery done more than 10 years ago (not by Dr. J Siebert.) I feel that I might need a touch up to the right side of my face as it is drooping. My nose is also affected now. I have a couple of questions for you if you don't mind answering. Does insurance cover this type of surgery and if not, how much did you spent on your surgery as well as the follow up surgery? (an estimate will fine too.) Thank you in advance and thanks for sharing your story.
Rebecca
Dear Rebecca,
Sorry somehow I just saw this comment on my blog today for the first time. I apologize for the delayed response.
I have had a few "touch-ups" since my "Flap"
surgery. Mostly fat filler injections to keep my face balanced. My nose like u describe also had become infected as well. I had surgery to correct it as a result also done by Dr. Siebert.
My insurance covered about 40 to 60% of each procedure.I however, had to layout the entire fee prior to each procedure. I have very old medical photos that helped me to get coverage and prove the procedures were not "cosmetic". I am happy to report PRS is recognized by OXFORD insurance company.
SSID has also added Parry Romberg Syndrome to their list of approved conditions.
I hope this helps answer your guestion.
HI I am 27 and am new to PRS-- I am really scarred and would like to ask you some questions about your experience with PRS!! I first had just a indent on my left cheek about two years ago and it has now going to my nose, lips, eyes, and forehead-- it ahs gotton worse after the birth of my twin boys in Feb 2011--- I have had so much pain and wierd sensations in my face --as well as twitching!!! My eyes are now afffecte and my vision seems off and doubled!! I have recently just contacted Dr. Siebert through email and pictures!! I can only pray that he will answer for his secretary said he should!!! I hope you can help me or simply just be there to chat with -- this whle thing is so scarry -- I would like my life back and understand what is going on!! Thanks
I have only been diagnosed by me but i have a smaller ear, nasolabial fold has fallen, my right eye is sinking into my head (it feels like that at least) and my vision in that eye has gotten much worse. I cried for the first time tonight when I read the Wikipedia definition. No running from that. I do have odd sensations in my face too, some pain. My RT sinus always feels like it is collapsed or something althougth CT Scan does not corroborate. Deviated septum to the left. Anyway, I am grasping at straws - wondering if I should try methotrexate and steroids or call Dr. Siebert. The reality is that it doesn't seem to be stopping. So would rather get some healthy tissue there to prevent the bone loss and more damage to my eye. Ugh. But first I need a diagnosis. Any suggestions for a doctor in Seattle, WA who knows what this is?
Hi,
Many of your symptoms sound similar to mine although,
I am not a MD so I really can't comment more.
See a board certified Plastic Surgeon in your area .
Dr Siebert is located in Michigan.
There is help out there. Stay strong.
Best wishes,
Cheryl
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