The Romberg's Connection Surgery Guestbook

23) November 25 2002 - 09:56
Name: Janette
Location: Australia
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Comments:
Hi everyone, I was diagnosed with Rombergs when I was 12, I had surgery when I was 18 and Im now 20, and up until now Ive never had any major problems with my eyesight, but in the last six months Ive realised that I find it hard to see!! Has anyone else had these problems? I have always had headaches and when I study hard or when Im stressed I blackout which makes it very hard, but after all these years its only now that my eyesight has deteriorated, its quite scary really. My mum, Sandra, comes on here often and has said that alot of people have experienced these sort of problems also, I would really like to talk to you, I dont really know alot about rombergs, theres not really alot to know, and I normally find it hard to talk to people about, I prefer just to pretend I havent got it... but then Im still scared about the problems that come along with it.
Good luck to everyone I hope to hear from some of you soon
Best Wishes
Janette

22) May 02 2002 - 08:09
Name: Brett
Location: Australia
E-mail:
Comments:
Hi Zoric. It sounds like you have it similar to me, but would be milder. I still have a cheek, but it is only just slightly thinner than the other healthy one. I've read a post here from a person from Holland saying that they've actually stopped Romberg's and even GAINED fat using Chinese acupuncture and herbal medicines. I've decided to give it a try and am starting tommorrow. There is no chance I'm gonna just accept this disease. I have a good life ahead of me, and wanna keep it that way. With good grades at school I would do Arts at university and then try out for officer in the Army. I still do Muay Thai Kickboxing but I guess I have to give that up. Taking knocks to the left side of my face is just getting to painful.Anyway wish me luck for the therapy and if there's anyone out there who has had alternative treatments please put a post up.
21) May 01 2002 - 23:24
Name: Zoric
Location: NYC, USA
E-mail:
Comments:
Hello! I was diagnosed with a right hemifacial atrophy since 14 years of age, when I visited a dental surgeon back in Russia.At that time cosmetic surgery was recommended after the age of 18 when all bones would complete their development. In kindergarten,I noticed that there was a slight shadow on the right side of the face, but the facial asymmetry was not apparent in a photograph.Since 16 years of age, I would get an occasional cramp in the right jaw associated with an ache and difficulty closing mouth.The right facial muscles would occasionally "twitch." This occured every couple of months.I recalled being hit in the right face in junior high school, but never lost consciousness, and this was not a serious unjury.I had ocasional difficulty chewing in terms of an ache ad difficulty opening my mouth, but there was no numbness, hearing deficit, or increased tearing.By now this symptoms are almost gone. I am 34 and really considering to do a surgery in a near future.I have a very local soft tissue athrophy - basically I am missing a right cheek.There are no bones abnormalities. I would be really appreciated,if someone could share an information, particularly those with a similar case and who had a surgery already or maybe even better who knows an ALTERNATIVE TO SURGERY SOLUTION.In case of the surgery, I am looking for an experienced plastic surgeon prefferably in the New York City, USA region. Please e-mail me at ZoricL@aol.com or Zoric_l@yahoo.com.I am really waiting for your reply.
Thank you very much.
Zoric

20) May 01 2002 - 22:51
Name: Tom
Location:
E-mail:
Comments:
This is a test.
19) May 01 2002 - 05:04
Name: Brett
Location:
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Comments:
I'm 17 now. I was diagnosed with Romberg's diease at 16. I only ever really noticed it at 15. I've had fat taken from my face and have had it put in the left side of my face in two operations now. The doctors say I currently have only a very mild form of the disease. Only 1 person has ever noticed it and commented. I've never had any of the headaches, eye problems, coup de sabre etc i've read in the stories. Altough I do suffer from pains in the left side of my face after I've had my operations (never before though). It is also very sensitive now and cold weather makes it feel weird (none of this happened before the operations). Why the difference in severity? I hope this thing 'burns out'. I've seen pictures and I don't wanna end up like that (no offence to the people in the pictures). I have my life ahead of me, and now I got some bs disease to complicate things.
18) April 19 2002 - 12:38
Name: maria
Location:
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Comments:
sorry about that rant down there. i feel a lot better today. it's just overwhelming sometimes. Peace everyone. maria
17) April 19 2002 - 00:02
Name: Maria
Location: USA
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Comments:
BIG TIME TRIGGER WARNING (this post contains scathing cynical sarcasm, some language, and perhaps an adult theme:) In other words, if you aren't old enough to ride the big roller coasters at Cedar Point, please, Stop reading Now. I don't want parents sending me mean emails.) Well, here I am again. I thought I'd just vent for awhile because I have SO much on my mind and everything seems to be piling up into a massive three week nervous breakdown, so, if you are in a happy mood, or looking for encouragement, this post is probably not the one to read :) (i wouldve posted this in yahoo, except i lost my password and cant rememeber which hotmail account I used to sign up! yehaw!) Things have gotten complicated with me. As a refresher, I'm 20, had two major surgeries, one when I was 9 to make my face more symmetrical and prevent "damage". They took a rib. Very Adameque, must say. And it was during this nine hour ordeal that I learned the true meaning of "vision quest" through morphine. Very Jim Morrison :) Anyway, my body aparently didnt like my own body since it decided to reject my own rib! So then I had to have medaprore (cant spell) some marvel of early nineties technology. That was equally fun, let me tell you. I still rememeber coming home from being in the hospital after a month and giving my mom a heart attack wanting to dance to Paula Abdul. I suppose I have always had a LOT of energy. But being older now, I can definitely see the disadantages of bouncing around with your head pieced together by staples. I suppose as much as I claim to have inner peace and not care what other people think, and be "open" and all that other * * *, I suppose some part of me is lying. I am mad about having this degenrate disease. All I ever wanted to be was normal. No such thing as normal? That is so patronizing I won't even reply. Sure it's fun to revel in difference. Pretend as though I am Unique, I am Diverse, I am the Goddess of snapping people out of their close minded predjudice. And some days, that's true. But most days, it's * * *. What really set me off is that I decided not to play the doctors game after 15, wasn't going to go down to Detroit anymore and play sterilized Rat for Experiment. This plan worked fairly well. Haven't been down there at all. Then this Feb. I found a bump on my head. No one knew what it was and it got bigger. Well now, without insurance, I just had an MRI and will find out the results tomorrow. I swear to God- correction, I don't even believe in God anymore. I swear if this is something that has to do with Rombergs I am going to go off the roof. How much is a human being supposed to take? If- having smoked for six year, I have given myself a brain tumor- I can handle that. That would be my fault. I could get over it. But if this is some delayed effect of Rombergs I'm going to go postal. Here I am in college, trying to give myself completely over to becoming the best possible writer, studying all these theories, falling in love (* * * as it sounds) with knowledge, and now I've got to worry about why the hell I have a golf ball size bump on my head?! How am I supposed to do anything with this * * * going on?! ok. i feel a little better. Well, not really, but nictotine will probably help me more at this point than further self-demonization.
16) April 10 2002 - 03:24
Name: shonna
Location: canyon texas
E-mail:
Comments:
Howdy from Texas! Just wondering if others out there have tried everything that has mentioned when it comes to halting this syndrome. It is hard for me as a parent not to keep searching for something that can halt this vicious syndrome! Has anyone tried chiropractic or acupuncture that can testify to improvements? Shonna Covin
15) February 11 2002 - 22:06
Name: stephanie
Location: united states
E-mail:
Comments:
Hi...I found your site while searching information about paraffin injections. Actually I am searching for any information about any surgeons that might have some knowledge on how to remove this "junk" from a person's body. I came across Rhonda's story through this search and the way she mentions the removal of the silicone from her face is prabably very similar to the procedure that will need to be done to remove this "Junk". If you have any information on plastic surgeons that might have some knowledge or even care to deal with a very unusual and difficult case could you please get back to me. Any information or response would be greatly appreciated. Thanks and merci...God Bless...stephanie
14) January 14 2002 - 04:42
Name: Donna
Location: Westminster, CO
E-mail:
Comments:
We've been advised by many doctors familiar with Rombergs to have surgery early but only AFTER the face and skull is fully formed (about 15 for girls) and ONLY AFTER the Rombergs has "burned itself out". (whatever that means...) Anything done earlier could leave an undesirable end result. (mostly because it's hard to "fix" tissue from previous surgeries because of scar tissue) And if this is true...don't you ever wonder how many people with undiagnosed Rombergs are having corrections done too early??? I think about that a lot! It almost happened with Kelley!!! (Now 10) The very first surgeon we took Kelley to wanted to break all the major bones in her face...reset them and try to grow new bone. (Distraction) She would have 3 or 4 screws protruding from the skin on her face that we...(yes WE were to do it at home) would crank a mm a day...to try to keep that side "up" with the other side. Frankinstein'ish, huh??? Needless to say...we got many other opinions and all the others said NOOOOO!!!don't do it because of the reasons I stated above. This is another reason that I feel it is so important to "get the word out" ...especially to the medical community. What we learned? Get lots of opinions??
13) January 07 2002 - 04:33
Name: Jane
Location: Cuyahoga Falls, Ohio
E-mail:
Comments:
Thank you - thank you - thank you the founders of this website!!! This is what the web really can do - bring people together! Man, I wish I'd had this when I was growing up! I was diagnosed as a teenager with Rombergs, am 34 now and have been through my share of surgeries - I think 5 now. Have a wonderful, supportive family, great doc (he's in Columbia, Missouri / Dr. Lin Puckett at the University Med Center - look him up!), great friends, good faith - these are the important things. Naturally, I hated my looks as a teen, and am still a Romberg's patient every day - it never goes away, but am growing into a more mature appreciation of what beauty really is. Nonetheless, it's a rough way to have to build character. I read Kelly's story with tears in my eyes. You are a sweetheart and brave spirit Kelly and you have been set apart to live a different, braver life. Those kids that say the wrong things - they will have challenges to go through too. Just focus on learning compassion for yourself and getting to know the beautiful you!!
12) December 04 2001 - 20:56
Name: Aoife
Location: Ireland
E-mail:
Comments:
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
E-mail:
Comments:
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
Sherree

10) November 02 2001 - 15:13
Name: Marijke
Location: Holland - Europe
E-mail:
Comments:
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,
Marijke

9) October 23 2001 - 08:25
Name: gwen
Location: florida
E-mail:
Comments:
hi
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.

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