The Romberg's Connection Surgery Guestbook

12) December 04 2001 - 20:56
Name: Aoife
Location: Ireland
Hi everyone,Im eighteen by the way and was first diagnosed with Parry Rombergs at the age of nine.It is only recently that i found this site.To be honest i didnt think that there were as many people with the same problem as me,it has been so helpful reading everyones stories.As i am having my first major reconstructive operation this coming summer i have been really apprehensive about it....but thanks to all your positive news im feeling much better....thank you all.
11) December 02 2001 - 04:43
Name: Sherree
Location: Texas
Hi to everyone that has sent me an email in the past month. Anyways, i have rombergs syndrome. I was diagnosed at age 23, i had it since i was 7 or 8. I was envolved in a swimming pool accident at 7 or 8 so i thought my disfigured face was caused from my acciddent. I resently have gone to a plastic surgeon Dr.t in houston texas, him and his cleft team staff diagnosed me for the first time with this dissease. They are scedrulling exstensice recomstrutive surgery on me wich will take a 12months to 18months to do. I will have my first oral and craniall visit with one of the team doctors this month. I am very scared but excitted. I know the surgery will be very painfull, but i don't care my wish of looking normal has finaly come true. I would like some infomation about everyonelses surgerys. The doctor's said that i will have one majore sugery to line up the hole side of my face by moving bone, the other is a bunch of small surgery's that is what they call touch ups, in other word bautifing me with the plastic sugery. I do have a pic of my self if anyone would like to see. I will try to keep everyone posted on my before and afterpic.
sorry about the spelling no spell check! thanks

10) November 02 2001 - 15:13
Name: Marijke
Location: Holland - Europe
Dear people! I have been a victim of the Romberg disease since 4 years and had two plastic surgeries already. After 6 months the fat disappeared again and I was looking for another solution. I hope this can be helpful for all of you! I went to the Chinese Medical Center in Amsterdam where I had an acupuncture treatment (until today only once) and guess what.... slightly the fat is returning. According to the Chinese doctor Xiu my nerves and bloodvains were blocked because of an intense, stressful period 4 years ago. Filling up, what the Western doctors are doing is only a temporary solution while the Chinese medical science (for over thousands of years) look to the body as a whole (Ying & Yang). In combination with natural herbal pills to stimulate my blood circulation and 1 x a week acupuncture in and around my ear, in my legs (nerves) it is working. After the first treatment that part of my face was glowing and I had a bit of headache so it was working. The first needles were painful but that was a good sign the doctor said. I am massasing it daily and my friends notice the difference as well (without me telling them). So, dear all, try the different Chinese approach!!
Take care & good luck!
kind regards,

9) October 23 2001 - 08:25
Name: gwen
Location: florida
i was diagnosed with rombergs disease when i was a child, i was told that there were other in the world with this condition but i never believed it to be true. i have a very successful story about my life and condition if you are intreseted please feel free to email me. my physician is Dr Tripathi from Lakeland, Florida.

8) September 23 2001 - 21:52
Name: Julie
Location: Boise, Idaho
Has anyone tried cranialsacral therapy or ozone medical therapy as an alternative treatment of Romberg's hemifacial atrophy?
7) August 12 2001 - 03:59
Name: M
Location: East Coast
Wanted everyone to know that there is an article in Colorado's Rocky Mountain News on Romberg's syndrome. Link: (Link has been removed) Let's hope this layman's version story gets the word out to the medical profession, as well as those who seek support.
Best wishes,

6) June 18 2001 - 21:15
Name: missy
Location: arkansas
I have had prs since 13 although I wasn't diagnosed until I was 31. I am now 35. I am really happy to have found this web site and wish all the best to all prs sufferers and their families.
5) June 07 2001 - 06:03
Name: heidi
Location: Lovell, Wyo
My biggest concern is am i going to pass this syndrome down to my kids or grandkids? It is a ruff way of liveing. i have had 2 surgerys when i was 14 years old but u can still tell that something is different. i need one more surgery to fix my eye. then maybe i will look a little bit better. i have been dealing with parry rhombergs syndrome since i was 4 years old and now i am 18. i don't like going to new places because no one else is use to it and i get funny looks. but i don't no everything i should no about this subject because not a lot of information is available
4) May 13 2001 - 16:05
Name: Tena
Location: Fargo, ND
Hi everyone!
Just wanted to let you know my Dr.'s name to add to your list of contacts. I wasn't sure who to tell so I hope the right people pick this up!
Dr. George B. Irons, Scotsdale,

3) April 15 2001 - 05:18
Name: Elisa
Location: Portland, OR
Hi, everyone. I am Denise's mom. Denise is my 17-year-old daughter, who has had Perry Romberg for about 4 years. I am told it is mild. We are told that the Perry Romberg has "stopped", although I don't know how one objectively says that it has stopped. The plastic surgeon that we have seen for 4 years has decided it is correct timing to have surgery this June, and it is currently scheduled. It has affected the left side of her face. There are two surgeries planned. One is preceeded by a CT scan and will result in a silicone piece, constructed by computer, to match the right side of her face. This is to replace bone loss. From some of your stories, this will be a painful procedure? Then, in August she is due to have either aloderm (not sure how to spell it) or gore-tex as a fat replacement in her face. Do any of you know of these procedures? For example, Melissa Walbert in Texas - what materials and procedures were used for you? We don't know what to make of gore-tex vs. aloderm? Any thoughts or help? We just now discovered this website and it is incredible. Four years ago it seemed no one had ever heard of this. When I said something was going on with my daughter's face everyone said I was crazy. Thanks for any thoughts or help you can provide!
Elisa in Portland, Oregon

2) February 28 2001 - 04:14
Name: Melissa
Location: usa
Although I've had Romberg Syndrome since I was 3, I wouldn't be diagnosed until I was 29. I found a wonderful plastic surgeon in Dallas Texas who had extensive experience dealing with this condition. I was nervous and excited prior to the procedure. Turns out it was the best decision I ever made. I can now say that for the first time in my life I don't feel different from everyone else. As soon as I can I'll be posting before and after photos.... honestly even I can't believe the transformation. Just so I don't mislead anyone... the surgery was extensive. It was also very painful for about 4 weeks. But for me personally it was the right thing to do. I'd love to chat with anyone anytime about all of this. God Bless All,

Name: Sarah
Location: Britain
Hi everyone. like so many of you i have suffered with rombergs syndrome. At the age of fifteen i was refered to the hospital by my dental surgeon,because he was aware of some facial abnormalities, i had also noticed these chances and i was becoming more aware that it was a problem. Once i had been refered i was amazed to hear that the doctor thought this problem was all in the mind.I left the hospital very upset and anxoius, and i was told to go back the next week to see another doctor. To cut a long story short this doctor was my saviour.After one appointment he told me that he was positive that it was rombergs syndrome and of course there was a definate diagnosis.It turned out that this consultant was one of the very few doctors in britain who delt with the treatment of rombergs%
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