The Romberg's Connection Surgery Guestbook

53) September 04 2008 - 03:05
Name: Laurianna
Location: Dallas, Texas
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Comments:
My son is 16 years old. We do not know how long he has had PRS, but it has been at least 2 years now that we look back at old school pictures. He has been doing acupuncture for approximately 2 months now. The dark pigmentation to his skin has almost completely disappeared. He is starting to get acne on the PRS side (we think that is a good sign). My family was allowed to see him in July for a pool party and they examined him as close as they could without him noticing. We waited four weeks, and took my son back to them at another pool party to see if they noted any difference. Both his grandmother and aunt believe he is speaking better (his muscle movement is noted as much better) they also notice his skin is colored more evenly. We have not yet found that the fatty layer is coming back, but we are hopeful. We do acupuncture once a week, acupressure 3-6 times per day, two different herbal medications 2 times a day. We will keep everyone posted on progress.
52) August 13 2008 - 08:15
Name: Kelly
Location: Alloa, Scotland
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Comments:
I have had 2 facial operations, 1st one involved me getting a titanium pate to raise the eyeball and I also had fat taken from my stomach and injected into my face, however the fat did not stay 1st time round. My 2nd operation was getting a small piece of skin removed from the corner of my eye to bring it in2 alignment with the other eye and I also got collagen injections to put volume back in2 my face as a temporary measure. My surgeon is fantastic and has a genuine interest, I had my 6 monthly review with him yesterday and he is delighted with the result of my eye operations but as the volume isn't staying in my face this part has to be rethought!!!
51) December 29 2007 - 03:16
Name: jessica
Location: mississippi
E-mail:
Comments:
I have perryrombergs dieases but look different from me i have the whole face problem and chest i need answers please sincerly jessica
50) September 14 2007 - 22:07
Name: dennis
Location: nj usa
E-mail:
Comments:
I was diagnosed with Rombergs in 1997. I have been treated by Dr. Scott Bartlett @ University of Pa. I have had four series of fat injections, with much success. Please feel free to contact me with any questions you might have. Insurance does cover this procedure.
49) September 07 2007 - 17:48
Name: Diana
Location: Portland, OR
E-mail:
Comments:
Hi everyone. I was wondering if anyone had tried a combination cheek implant/analogous fat transfer on the affected side of the face? I have PRS and got a cheek implant a couple of years ago. It helps a bit, but I am still needing fat over the implant to create better symmetry. I tried a fat transfer maybe five years ago, but it absorbed very quickly. Is it possible to do a fat transfer on TOP of a silicon cheek implant? Thanks all!
48) February 22 2007 - 04:40
Name: Mike
Location: Mexico
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Comments:
Hi, excuse me, one questions, i need information of the surgery for septum nasal for ventitalory problem, someone have information thanks
47) October 23 2006 - 11:59
Name: Sylvie
Location: UK
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Comments:
Just to the message below, i was also delivered by forceps and have rombergs. Always wondered if that had anything to do with it, i think i've read that a lot of people with it have had bangs to the head or were forceps delivered.
46) October 22 2006 - 01:26
Name: Jeanell
Location: Atlanta, GA
E-mail:
Comments:
I am 36 years old, and I was diagnosed with Parry Rombergs disease when I was 19 years old. I have alway been curious if the fact that the doctors used Forceps on me when they delivered me has anything to do with the onset of the disease. Did anyone else have forceps used on them? Thanks!
45) October 06 2006 - 06:15
Name: cheryl klein
Location: long island ,New york
E-mail:
Comments:
i want to thank all of you for the many e-mails i recieved when I posted a little of my story, which i should have researched the most recent findings before i scared half of you to death. I just spoke to donna Sperry who urged me to tell part 2 of my story and iI said there isn't enough room I have lived a whole life-time movie and i am only 42, but I will post Cheryl's story on the personal page because i feel I am giving back a little insight that maybe some young lady who "kellie" will see I am one of the lucky ones and ccordinalthough i am sure some of life would have been totally different if I didn't recieve this lovely gift which i NOW HAVE LEARNED ONLY A DAY AGO, is actually a birth defect, i was born with a weak muscle in my right eye which I was told only last year i was born really not seeing much for the first 7 years of my life when my mother realized I couldn'tlearn to tell the time because i couldn't see the numbers on the kitchen clock.It took thatlong till i finally got a clear view of my world!, and ironically it was the first indication i had Perry Rombergs disease which took 35 more years to learn the truth, so i apologize to anybody who i scared when i said back in the 70's they believed childhood scleraderma which didn't become visible until i was 11 after a minor cut on my right chin just didn't heal right, was a flesh eating parasite that basically lived for 2-3 years and then after "eating" up, sorry for being so graphic but that's what it looked like got full, a little joke, no really it was told to my family it dies or in my cased died suddenly after 3 years,because again i apologize they thought i was going to die like other scleraderma victims and this is why I should have read up on the lastest findings which i have been doing and i found out in 1992, the airborne virus theory was officially ruled out. this led me to my horror to know i was born with a birth defect?? to my added horror i loggeg on to a scleraderma site and it had ranaurs hand disease listed right besides scleraderma, my little sister was diagonosed with ranaurs disease in her early 20's? it also said i can develope scleraderma later in life with her condition.Again another birth deffect, to my even greater horror my brother also has a rare form of arthritis also listed on the same page. I have been freaking out since i went on this site but I am scared so scared maybe one of little girls will have what i have and i couldn't handle it, so i called my plastic surgeon who a lot of you wanted some information and cried first to Donna Sperry who already contacted Dr John Siebert,my surgeon who performed my 10 hour vascular flap surgery 4 years ago which was a long hard ordeal beacause i had so much silicone, so professionally injected by notorious dermabrasion pioneer Dr norman Orientriech, who injected me with carefully measured small amounts of liquid silicone by a long thin scary as hell needle which I had every wedneday of the first week of every month for a mind blowing 13 years, I was photographed every visit my photos and history were documented in many medical reports, and was even heard by the FDA to stop the ban of liquid silicone it did wonders for me and is still exactly intact to the the amazement of Dr Jonh Siebert, perfect little rows 25 years later still in perfect condition and there was so much silicone he couldn't and didn't need to remove it but he had a very hard time connecting the transplant which again was taken from my upper back and you would never realize how much he actually took skin and muscle because he expertly and cleverly closed the area in a single thin line right wear my bra strap sits, so i am stil able to wear any style dress and bathing suit and he did a excellent job! because of huge amount of silicone he has a huge problem because he could fuse the 2 major arteries together one was alot wider then than the other and I needed 2 blood transfusions and i must have been close to going into shock because they couldn't finish the whole procedure because my life was in danger. as a result the team of doctors and residents drained and tried to keep the flap alive and they worked on me round the clock, Dr seibert whose office is on Park avenue in New york city, who told me he logged over 400 flaps with a 99.9% success rate said kiding around i ruined his score, joking around , he has excellent bed-side manner and he is considered to be one of the finest and only one of a handful of surgeons that performs this operation. HE has on his walls so many degrees and honors from virtually every creditied board of plastic surgeons. He graduated top resident in his class. he also is not very old which i was surprised with so much experience.He called me back today because i recently had a door hit my nose and i think it was broken and it didn't set right, i know thought maybe this disease which i had not experienced any symptom since 15,could possibly be back??? Again he assured me and squeezed me into his appointments that i probably just need a nose job!!! BUT i never experienced like so many of you any migraines or pain or spasms just a few moments of my jaw locking for a few seconds which again i never had since 15 years old, but i did that night about 6 monts ago a weird facial twiching i couldn't control, just that night just once but is once too many for this disease to come back???? i will find out, but the right side which had surgery and than a revision cosmetically to finish me off , he also injected my upper lip with fat because it rose a drop because he took the silicone out of my lip. to be honest this is not a fun surgery. it took me a year of hellish swelling, which again happened to me everyone recovers differently and for teenagers i hear it is a piece of cake and half the recovery time because the skin is more workable than someone in their upper thirties.My husband who was in the recovery room must really love me because he said "honey you don't look so bad" as he suddenly ran out i recall to throw his guts up! i had to be love, i had 3 frankenstein bolts holding my flap on the first week ,lived on morphine the first 5 days and then percodane for 8 months which I fortunately didn't get addicted too, but my housekeeper too my horror who was basically taking total care of my 1 year old daughter and her 4 yr old sister. loved painkillers and stole bottles from me, she was fired when she tried to actually to take a bottle of pills the last one, in the house i fell asleep holding the bottle in my hand because i was catching on by then, and she physically tried to pry them from my grip i woke up dazed and very weak and she looked like a true addict -that look in her eyes like she would kill me if i didn't give her those pills. I so scared and so weak i threw the bottle at her and told her to get the-f---- out of my house. she didn't leave until i pressed the silent house alarm when she left the room., then she left in handcuffs and a policewoman was holding my baby girl till my husband rushed home horrorfied. my point is the quote good help is hard to find and so is a good reptuable doctor. DR. SIEBERT will answer any inquieries and many people flew from all over the country to get a consultation. I am not quarenteeing he can help you because i suffered from only one disorder and i learned many pr victims have some other disorder asssociated with the brain and other areas. i was considered to be a good candidate and remember you will be under for about 10 hours and this anestesia is the quite risky if you have certain complicatiions asoociated with PR. i am glad and proud to say it took a good year but i had actually soft new skin that has now totally intergrated into my face no scars, he did all incisions behind my ear and on my scalp like a facelift. also he said i would eventually get feeling their again i was numb for 2 years but now i have full feeling on that side BACK!! i aactually yell ouch when i get my lip waxed now! thats when i knew i made the right decision and the i only wish i had this option available to me when i was 15 the time i would have had the surgery if it was available. i never realized the disease actually went into my nose ear and corner of my eye because my eyes never drooped at all but then again this disease started showing at birth in my eyes and affected my vision. i wear soft contacts , have terrible eyesite but i see perfect with contacts so i hope i have no later vision problems. i joke at eye exams just hold up the giant E that all i can see! we laugh but it isn't really funny and neither is having PR. i consder myself a survivor and i have seen greater tragedy's than mine, like when my father who was the one who would have gave up every dime he made and trade places with his "favorite" daughter. HE SADLY lost both his legs to diebetes and died in 2000 ,which he knew would be his last and stayed up all night watching each country in every time zone celebrate the new year. He liked Paris the best. we had many conversations after he lost the first leg and experienced "those stares" like i did and he said to me I Now understand exactly what you had go threw and I never really knew the anquish you felt. DADDY IT WAS YOU WHO KEPT ME GOING, it was you who held me and told me i was beautiful when i was at my uglyest, it was you who found me the right doctors and beacuse of you i stayed strong and survived. he later took his first steps that day while i was still there with a temp prothesis and saw the tears of joy as he took a few steps on his own.we both cried, i knew he would survive. He drove swam and traveled the world with one leg and i gave birth to my first daughter in 1998 just when his other leg to our horror was affected and we didn't say it but my family knew he would have to have amputated. He was so proud he opted to die without the amputation in dignity but when i gave birth to my gorgeouse "nicole rose" she instantly became "his favorite" and dicided to amputate the 2nd leg so he could hold her. HE LIVED his final days in a depression no PR victim could possibly compare too and his only real joy were my daily visists when i brought nicole over.he rarely put on 2 fake legs and it took all my strength, I had more than the rest of my family who couldn't handle seeing Daddy half a man. He used to be 6ft3" and resembled a football player. perhaps having romberg's disease was a test of my strength of my mind and my heart or .He was hospitalized the last 3 months of his life when the disease went into his kidneys, another lovely disease with no cure, and his final words to me were take care of my Nicole i'll be watching 0ver her. i was allowed to bring her up to icu for 5 minutes and ironically my daughter who never let my father catch her as she ran his house but she sat at 2yrs old a full 5 minutes on his lap and we all knew this is that life is full of suffering and watching the love as held her for the last time. I finally realized i could survive anything after PR, I was able to give my father his first granddaughter I am so proud iwas able to come fi ull circle from a sick child who wanted to die to being a wife and a mother who had no self pitty or anger "why me" at god left. perry romberg may have scarred my face but not my soul and to my fellow members and readers, perry romberg doesn't have to destroy your life but it will if you let it. true beauty comes from the heart and from reading so many stories here on romberg connection , everyone of us is beautiful. thank you for reading, cheryl klein
44) October 01 2006 - 20:39
Name: CHERYL
Location: ROSLYN NEW YORK
E-mail:
Comments:
I HAVE ONLY KNOW THE PAST 5 YEARS THAT I SUFFERED AT AGE 11-13 NOT WITH SCHLERADERMA BUT PERRY ROMBERGS DISEASE. I AM 42 AND HAVE QUITE A LENGTHY STORY IF ASKED TO SPEAK OR WRITE PUBLICALLY I AM A PROFESSIONAL JOURNALIST. I HAVE ALSO 4 YEARS AGO HAD THE SURGERY THAT IS A MIRACLE NOW FOR YOUNG GIRLS WHO NOW KNOW THAT THIS PARASITE DIES IN 2-3 YEARS. THE DAMAGE ALTHOUGH GOES WAY BEYOND BEING PHYSICALLY DEFORMED AND I WAS TOLD MY DISEASE WAS TERMINAL AS WELL. THIS DISEASE NEEDS NATIONAL AND WORLDWIDE ATTENTION BECAUSE I HAVE SEEN MANY MORE CASES OF ROMBERG'S DISEASE IN RECENT YEARS, NO ONE HAD A CLUE IN THE 70'S THAT I HAD PERRY ROMBERG'S DISEASE, THOUGH IT HAS BEEN AROUND FOR CENTURIES. THIS DISEASE AFFECTS YOUNG GIRLS SELF ESTEEM AND PERMANANTLY DAMAGES THE WAY WE SEE OUR SELVES IN THE MIRROR EVEN AFTER SURGERY. THE TORMENT I ENDURED BY CRUEL CLASSMATES AND BEING CALLED "SCARFACE" I SHRUGGED IT OFF LIKE IT DIDN'T BOTHER ME , BUT INSIDE I WAS SLOWLY DYING AND WANTED TO RUN OUT OF THE CLASS AND HIDE AND I WANTED TO DIE. I WAS CRYING INSIDE AND BURRIED THE ANQUISH AND HORROR AS I WATCHED MY ADORABLE FACE TURN INTO A MONSTER. IT WAS IGNORED BY MY FRIENDS WHO STUCK BY ME AND ACTED LIKE I WAS THE SAME POPULAR GIRL WHO HAD EVERYTHING GOING FOR HER. BUT SADLY, I HAD NO ONE TO TALK TO, REALLY TALK TO EXCEPT MY DAD WHO KNEW WHEN I WAS AT MY LOWEST AND TAUGHT ME TO BE STRONG AND HOW TO BE A SURVIVOR. HE WAS FIRST WHO TOOK NOTICED SOMETHING WAS DEFINITELY WRONG WITH HIS DAUGHTER'S FACE WHEN AFTER A TRIP TO FLORIDA I SCRAPPED MY FACE ,CHIN AREA, AFTER DIVING OFF THE DIVIBG BOARD AND HITTING THE CONCRETE FLOOR. MY PARENTS NOW DECEASED USED EVERY ETHICAL AND NON FDA DRUGS EXPERIMENTAL TO HELP ME, IT JUST GOT WORSE. FINALLY IT ALL STOPPED AND WE HAD NO CLUE WHY. MY MOTHER TOOK ME TO RENOWNED DERMOTOLOGIST FR. ORENTREICH IN NYC AND HE SUGGESTED ONLY BECAUSE HE SAW A PRETTY GIRL UNDER THE DAMAGED QUOTE" I AM ONLY WILLING TO USE SILICONE INJECTIONS SMALL AMOUNTS EVERY MONTH BECAUSE I BELIEVE SHE WILL BE A BEAUTY , IF I DIDN'T THINK THAT I WOULD SAY DON'T WASTE YOUR MONEY 1000.OO$ UNINSURED FEE EVERY MONTH FOR THE INJECTIONS, AND TAKE HER HOME AND WHAT HIDE HER IN THE CLOSET???? SLOWLY FROM AGE 13 - 17 I ENDURED THOSE SILICONE SHOTS. AND SLOWLY I STARTED TO LOOK NORMAL WHEN I WAS 16 A BOY EVEN ASKED ME OUT, ME????? I WAS BEGINNING TO ACTUALLY LOOK IN MIRRORS AGAIN, BY 21 I LOOKED LIKE A MODEL WITH FULL LIPS HIGH CHEEKBONES AND I HAD A BODY TO MATCH ANOTHER OBSESSION OF MINE. THAT WAS THE BEGINNING OR THE END OF PART 1 OF MY STORY. I WILL CONTINUE ON ANOTHER DAY . I HOPE I CAN BE A SPOKESPERSON TO LET THE PUBLIC KNOW YES YOUR DAUGHTER CAN CATCH THIS PARASITE AND YES NO ONE KNOW MUCH ABOUT THIS HORROR DISEASE AND HOW IT AFFECTS US A AGE WHERE WE ARE SO INSECURE NATURALLY THAT GETTING THIS DISEASE AT SUCH A AWFUL AGE FOR GIRLS MAKES IT EVEN MORE DEVASTATING FOR THE VICTIM AND THERE FAMILY. I HOPE YOU CAN CONTACT ME . I WAS OPERATED BY DR SEIBERT FROM NYU HOSPITAL AND HAVE PUBLICALLY HAD MY PHOTOS USED FOR RESEARCH ON THIS NEW FACIAL VASCULAR FLAP OPERATION.
43) September 12 2006 - 11:28
Name: Jessica
Location: San Antonio, Texas
E-mail:
Comments:

42) January 08 2006 - 12:55
Name: Silke
Location: Germany
E-mail:
Comments:
Dear Members, I was very happy to have come across this website. It is very, very helpful. I have had the disease for more than ten years, the onset was when I was 20 and it was diagnosed two years later. I seem to be one of the lucky cases where it stopped soon after it started and did not do that much damage (as I learned from your experiences it may start again one day, I hope not). Now I decided to do surgery after 15 years of coping with the condition with a lot of emotional energy wasted for denial of the fact that something is wrong (as I see from your accounts, I am not the only one who coped with it this way). The surgeon I consulted said it is a simple procedure, but from the experiences many of you describe I can see it is not that simple. He said he will take a piece of fat from another part of my body and put it into my face, with 30% excess to make up for the absorption, and after half a year it will look the way it is supposed to look. This would include a hospital stay of 10 days. I would be very grateful if those of you who went through it could tell me their experiences and give me advice if they would recommend that I do surgery, if it is worth the pain, the risk, and the months or even years after the surgery when I look worse than before? I had hoped that there are other, less invasive methods, but the surgeon said fat injections are not permanent and the cosmetic results are not satisfying. I apologize for my English, and I hope that the one or the other of you can help me making my decision. I thank all who tell their stories on the website, reading them was of great help for me! Silke
41) November 12 2005 - 20:01
Name: Carol
Location: North Carolina
E-mail:
Comments:
I am 45 and was diagnosed at age 25. I do not think I have a severe case but it is still obvious. I have lost the fat in my left check, side of my face and below my eye. My husband is in the military and our insurance, Tricare, agreed to treat me with a series of Sculpta injections. I have had four to date with two remaining. I cannot believe the difference and in the end, it may not be perfect but the change is amazing. The proceedures are a month apart and done in a hospital under sedation. The bruising and swelling lasts approximately a week. The Sculpta lasts approximately 2 years but hopefully, I won't have to repeat the complete series of 6 in 6 months - maybe one every 6 months or better yet, maybe a permanent filler will be available in the next few years. I know it may not be the answer for everyone but for now I am very pleased with the results.
40) November 12 2005 - 12:58
Name: wendy
Location: england
E-mail:
Comments:
Hi,i,am recovering from surgery, this is the fourth week and i need to write to you all about not giving up when your told there is nothing they can do.My disease took hold when i was 13 i,am now 39,three years i had three lots of fat injections over a two year period that was the maximum number of times it can be done, it helped alot but it dissolved over my cheek bone area so again it was just thin skin covering it and i looked gaunt.Both side of my face where affected even my arms.I was told by a number of surgeons in my locality they could not help me. I found a surgeon by the name of Iain Hutchison on the internet i have seen him on television and arranged to meet him through Pat Wicking at ST Bartholomews in London on the NHS i met with him six times over a period of two years i was having MRI and XRays.I was admitted to ST Barts where he removed a strip of facia on both sides of my head folded it and placed it over my cheek bones it took five hours.I,am left with a scar ear to ear over the top of my head and stitches to my face to hold it in place.They made an excellent job they did not shave much hair of, that is my pride and joy.I,am still swollen and bruised but already i love my fat cheeks!He said i will look stunning when it has settled and i beleive him.The first time ever i feel pretty.He is my GOD he is a lovely caring man and very gifted he has a web site Saving Faces have a look. I can not believe i have wasted so much of my life to this disease and all the time he could of helped me but nobody pointed me in that direction,so i helped myself, so far it has been worth the pain and discomfort.No more stares ,whispers or comments my life begins!please email me if you would like to know more about the procedure. thanks for reading WENDYx
39) October 09 2005 - 05:18
Name: adele
Location: New York City
E-mail:
Comments:
Dear Sarah,
That sounds absolutely wonderful but most doctors over compensate when reconstructing the face due to the fact that the fat graph will atrophy again. My forehead was reconstructed last year and looked fine for a while but now looks more like mashed potatoes. I continue to have atrophy and it probably will last the rest of my lifetime with out ceasing. A procedure like the one you describe would work wonderful on persons who have disorders that will not progress. Surgery does not stop the disorder (rombergs) or the progression it merely masks it for a little while and then you are back to where you began. Maybe it will help the young ones. I'm too far gone. Good luck! Stay well. Adele Liu

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