The Romberg's Connection Surgery Guestbook

42) January 08 2006 - 12:55
Name: Silke
Location: Germany
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
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
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
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

38) October 08 2005 - 18:50
Dear Community,
I read about Kelley Sperry's story recently, and subsequently found the Romberg's connection website. I was extremely touched by the stories that I read there, and this led me to do some brain-storming and research. I have found a company in England that may be extremely useful in helping to reconstruct facial structures. (LINKS LISTED BELOW! AMAZING STUFF!!!!!) What occurred to me, and what I subsequently searched for and found on the internet was this: If you were to use medical imaging (mri) and use the images to control a cnc milling machine (a machine that can be controlled by computer to cut exact shapes), then you could create surgical implants that EXACTLY re-create the patient's bone structure, using the non-atrophied side to get accurate information. How this would work is like this: 1) An individual with Parry-Romberg's syndrome would be scanned, on the non-atrophying side of their face. 2) The information about the exact structure of their bones would then be made into a mirror-image in the computer. 3) Using that mirror-image, the information would then be used to CNC mill new bone-like implants for the atrophied side of the face. They are already doing this to create titanium plates for the skull, (using a mirror-image of the non-affected side.--see link below) 4) Then, maybe they could also scan the outside surface of the face, mirror-image it and use it to help somehow (?????) with reconstruction of the soft tissues of the face, which at the very least would be positioned over top of a solid and accurate structure (of the artificial bones). Here are the links to the company in England that is doing this work, and to their partnering hospital: LINKS!!!!!! LINKS!!!!!! LINKS!!!!!! LINKS!!!!!! LINKS!!!!!!! LINKS!!!!!! The current plastic surgery that was mentioned in so many personal stories seems to be far less exacting than this, dealing alot more with padding than with structure. I believe that if the structure itself can be returned to symmetry, this would be helpful in forming and shaping whatever tissues were then shaped over top of it. Hope that this proves to be helpful. If this helps even one person, even the tiniest bit, I will be extremely happy.
Sarah Watts

37) August 24 2005 - 22:17
Name: Chris
Location: Pennsylavnia
I always noticed one of my younger sister's has a sunken nostril and slightly sunken facial cheek as well as a slightly droopy eye on the left side of her face, she also was diagnosed with a lazy eye as a child, but no one every addressed the facial difference. I did one time question my mother who said it was the way she was laying in the womb. Made sense to me!!! Now after reading an article in Readers Digest July 2005, I realize she may have this syndrome. I won't say anything until she developes another of the symptoms. There are six of us and now I am looking at us really close. My brother who is close in age to my sister, never closes his mouth, it is not really noticable but, I have noticed in the past and asked if he was catching flies. Now I wonder if he also has a form of the syndrome. This is very interesting and I wonder if some doctors are baffaled as to a diagnosis for some patients. Thanks for your time.
36) March 29 2005 - 13:44
Name: Heidy
Location: Holland
Dear all, recently i've been diagnosted with PRS, I would like to meet dutch people with the same disorder.
35) March 02 2005 - 10:42
Name: Anne
Location: pennsylvania
Hi, this is my story and some concerns I have. If anyone happens to stumble upon this has the time to read and email me with any useful advice (or their own stories) it would be much appreciated. If it's true that Romberg's is precipitated by a facial trauma, then I'm not sure when mine really started. When I was four i was bit by a dog in my left eye-tearing out my eyelid completely. I recieved plastic surgery that same night and ever since have had a barely visible droopy eyelid that only my mom has ever noticed. About two years ago I went through some pretty intense emotional trauma , lost a lot of weight and started developing severe allergic reactions to wheat,soy,dairy,nuts,and all antibiotics almost overnight. I started to get pins and needles in my arms & legs and become intolerant of heat-anything over 70 degrees and i can barely manage getting up the steps. during this time i started to notice my face was perpetually bright red especially in my nose/lip and cheek area. November of last year i recieved a flu shot and things went downhill from there. I got mono, was taken off paxil (causing a nightmare-ish reaction) and started getting migraines and severe stomach pain pretty much everyday. My bloodwork from those time periods has been confusing..raised ANA levels, low Complete Blood cell count, low white blood cell count..but nothing that actually pointed to a problem. fastforward to april of 2004. i got my wisdom teeth out (facial trauma number two) and noticed a DEFINITE change almost immediately. My left eye and eyebrow are considerably lower than the right, and the left side of my face (cheeck and forehead area) just seemed "off". in the summer my nose turned a blue-ish color with has recently turned to a brown line that splits in the middle and has within the past week gone down into my lip. i have a small dent in my chin-slightly darker in pigmentation. the left side of my cheek is thinner, as is my jawbone. I also have that coupe de sabre down the middle of my forehead. it seems to me that this may have been a life long thing reactivated by periods of stress. i have some doctors that believe its Perry Romberg but no one willing to give me a diagnosis. i sometimes think they dont want to admit to a nineteen year old girl that her face is falling apart?? with all of this, i'm wondering if surgery would even be an option-in june 2004 i had a muscle biopsy done and have severe keloid scarring. I am allergic to most medications and even simple things like latex, and tape. I'm not sure how facial surgery is differentiated in the body and not just absorbed as a "trauma". in the past year and a half i have been diagnosed and undiagnosed with Lupus, fibromyalgia, Raynauds Phenomenon, and a whole bunch of other mysterious diseases with no cure. it's becoming apparent that the hardest thing is looking in the mirror, and finding the confidence to to look people in the eye. it's upsetting to know there isnt much in my control, and that it's going to be a lifelong issue. i read every one of these posts and noticed that it's easy to sound brave and feel "special" on paper or in a note but to walk around like some sort of disfigured martyr is another thing entirely. i need real coping mechanisms, and would appreciate any feedback. thanks for reading.
34) February 18 2005 - 06:11
Name: Johanna
Location: Alberta, Canada
Hi... This message is for any and everyone who is willing to listen and give some advice. I have had Parry Rombergs for well as long as i can remember. Like many people on the site, my family and I thought it was due to injury that the left side of my face is sunken in. Due to the fact that there is no fat in the left side of my face I have a very visible vein as well, and when i was about 15 i decided to get laser surgery to remove the vein. In the end i didn't end up going through with it because it was the dent/lack of fat that bothered me the most, but during this time i noticed my upper left lip was also afflicted with no fat. After going to various surgeons I have found out that i have hemifacial atrophy. Like all of you it has been a constant struggle. This website has been a source of hope for me even though i havent written on the board until now. In fact the reason i'm writing is that i'm going for fat injection this June and I was just curious if anyone has had this surgery done before and what I should expect or if I should even bother with the surgery. I thank anyone who takes the time to read and or respond to this message. Please remember that despite this disease we all have to deal with you are all wonderful beautiful people. Thanks
Sincerely Johanna

33) January 24 2005 - 02:10
Name: Sherree
Location: From Texas/live in Yuma Az, Hubby in the Marine Corps
Since I have last wrote I have had many changes for me. I have been currently living in Yuma Arizona; my husband joined the Marine Corps In 2001. I first got diagnosed with Parry Romberg Syndrome in Houston Texas in 2001 at the age of 23. My Romberg’s started at age 8 years old with a blow to the chin and jaw while I was taking swimming lessons. During the first week I also got hit in the back. The accidents were minor, with no concern for medical treatment. At the time my family was living in Johnson’s Bayou Louisiana. My grand father was a welder working in big chemical refineries. We also moved around a lot in the South East Texas area. After the accident I experienced changes in my face. First change was the left side of my face turned bluish in color, like a big bruise, I experienced what I called a major migraine. I had gotten very sick, threw up and was very sensitive to light, no medication would help. My family thought to bring me to the doctor but as the day went on I got better. The blue spots though never went away. Though my family thought it was odd that my face was blue in color I did not see a doctor tell a year latter. I saw the doctor to help give me medication and treat me for tonsillitis, My grand mother asked him to look at my jaw and chin, he told her it looked like I was loosing circulation in my jaw and chin, but had no concern about it. Unlike others I went threw life not knowing I had Romberg’s all I knew was that something was wrong with my face and back. I got braces at age 13, which is when I got my first ex-ray on my mouth. The orthodontist referred me to see a maxi-facial doctor to see if I needed any type of surgery to help straiten my teeth and correct my jaw and chin. The doctor wanted to do surgery but did not diagnose me with Romberg’s; he also stated that the brasses could help without surgery. So I got brasses in hopes that everything would correct itself. As a teen you go threw lots of changes. I got picked on a lot with my peers. I grew to have a low self esteem and found myself in the privacy of my room staring in the mirror wondering why my lips where smaller on one side, why kids would call me crocked chicken lips, why I had a small indention in my chin that looked like it did not belong there. My jaw looked liked I had play-dough jaw as if someone had pushed my jaw inward with there hand, and it was still blue in color. I grew to have learning difficulties in school. It was very hard for me to stay focused on things when all I could focus on was what I looked like. I did make quit allot of friends, some I still have today. Even though I had a self esteem problem I managed to still have a normal life as I learned that make-up was the new miracle drug. I gained confidence and grew to be a little more sociable when it came to boys. Not that many people could tell I had something going on with my face anymore. As for public mirrors, I dodged! There was something going on with me and the whole sharing a mirror thing. I called it the evil double mirror reflection, snow white with the evil witch. Every time someone else would see me in a double reflection they would look at the mirror and then look at me like they saw something very wired. I later learned that the double mirror enhanced the whole disfigurement. At age 17 I got my braces removed and as far as the changes in my face well it seemed like it stopped. I got married at 17 and finished high school. It was when I was 17 when I experienced my major migraine again. I was sitting in the living room talking to my husband and all of a sudden I stopped talking and felt horrible pain radiate in the right upper front part of my head and then it sent electrical like pulses threw my temple then it spread every where. It all happened so fast I had no time to react, it was as if I was spaced out, I was frozen in pain. My husband was confused and thought I was ignoring him and he hollered at me to try and get me to respond. I looked at him and started crying then I grabbed my head and went into a fetal position. I then started beating on my head with my fist to relieve the pressure. My husband reacted by pulling me up and walking me to my grand parent house, they live a couple of doors down. For 24 hours I was in pain. I took one of my grand fathers pain killers to help relieve the pain. I also had to put cotten in my ears to drown out noise. I also had to cover my eyes from the light. After that, my family and I noticed there was realy something wrong. A few months latter my nose had now turned to the left just slight. I started with more visual problem. I know was not confident to drive at night cause everything was blurry and would blend together. I went to the eye doctor and he said nothing had changed with my vision but now I had night blindness and I had a slight dimensional problem. I was 20 when I had my first child. My pregnancy was good until the day my water broke and I went to the hospital to have her. I ended up getting an allergic reaction to a medication that was not mine. The nurse had made a big mistake and gave me someone else’s meds. I when into allergic shock and had to have ER come and help. I immediately had to have medications pumped into me to save my life along with my baby’s life. My blood pressure shot threw the roof and I got another major migraine besides that they induced me to go into labor, after 8 long hours of my body doing nothing but be in shock they scheduled an emergency c-section. My daughter now has problems related to her birth. After she was born my nose turned even more, I now had a big split on the tip of my nose. My lips shrunk some more, my face just looked worse and this time it was really noticeable with or with out make-up. Before loved ones did not notice as much, but now they did. At 23 I went and took my daughter to my old family doctor because she was sick. As I got her treated I was going down memory lane with the doc on when I was small. I happen to mention about my face and he said he was about to ask before I did. He examined me and said, “why don’t we get a head x- ray done.” I got it done in the office as I was waiting for my results I chased my daughter back in the room when I saw the doctor call another doctor in. Looking at the X-ray I saw a skull that looked like it had been cut in half and someone tried to put the wrong piece back on , on the left side. The doctor then saw that I was standing in the room and Came an put his arm around me and told me that I needed to see a specialist right away. So that is went I when to Houston Texas and I got diagnosed with Parry Romberg Syndrome. I saw a cleft team which wanted to do the whole 9 yards on me. I would be spending 3 years or more of major facial reconstruction. They all told me about what Romberg’s was and how rare it is. I agreed with them about the surgeries but it never crossed my mined on how hard it would be to do it. At the time my husband was un-employed and we where on government assistance for a short period of time, then that got dropped when he joined the Marine Corps and serve his country. It was always his dream to me a Marine and at 26 years old he became one. I then got on Tricare Insurance which is for military and there dependents. I ran into a problem with the insurance company not letting me see what ever doctor I wanted, not every doctor covered Tricare. I fought and fought with the insurance company to see the cleft team. Tricare would not let me because I was out of the region and was not yet at my husband’s new duty station. Everything went on a stand still. We then moved to Yuma Arizona in 2002 and again tried to see doctors out in town for my face. Finally I did get a referral to see a new cleft team of doctors and again was at a stand still. Some of the doctors I needed to see where maxi-facial and orthodontist and tricare / United Concordia would not cover because they said no matter what it was for it was for cosmetic reasons. So then I raised hell at the stations tricare office and went and saw my doctor on base and got a referral to see my doctor in San Diego California at the Balboa Medical Hospital. At first I fought not to go to this hospital because it is 3 hours away and we could not manage the cost of travel, but this became my only means so I took it. My first visit was great my Doctor, DR. Amy Wandel in plastic surgery new about my syndrome and was prepared to do what ever surgery option I wanted and everything would be covered no matter what She is head captain of plastics. So we disused different procedures and at that time I had done my research on Romberg’s and got involved with the Romberg’s Connection and I also participated in the Dr Stones survey. So I chose to do the free flap, my Romberg’s is a mild to moderate case so total reconstruction was not what I wanted not only that my daughter has medical problems of her own and needed constant care. I had my first free flap surgery in June of 2003. A 14 hour operation that had me in ICU for 3 days with a blood transfusion. My husband had come home from Iraq and was there for support. That week in the hospital was the hardest. The Flap went well, to well, there was no absorption, my face was huge. The doctor put allot of fat tissue in so that I would have enough. Now I am undergoing touch-ups, and to be honest I thought about why I even did the surgery, because I had to deal with the new me, I looked more disfigured than ever and there was no hiding it. I stayed in my home with low self esteem and I would not go out and leave my home without a band on my face to lift up the flap and try and hide the bulkiness of it. I had my last operation in November of 2004; I am now waiting on the results of having another one planed. This may be the last surgery as far as chin and jaw surgeries. I do see a great difference in my face I now have a chin; my lips are looking nice and full. As far other surgeries they still hang as future options. I have no sinus cavity and it is in need of surgery. My hole left eye orbit and temple needs to be reconstructed to help me see better. My cheek doesn’t need reconstruction cause of the last face lift I had to pull up the flap. My self esteem has improved I can leave the house now, When people ask what has happened to they latter responded with,” I thought you had a toothache.” My final thought on me with Parry Romberg’s is that for a long, long time I was blind by what I have, I did not know until latter in life, but I always dreamed of looking pretty, and feeling pretty. I went threw a long hard road in not knowing my self then finding my self then losing my self then finding my self all over again. I have grown strong and I am not afraid to stop and tell people about what I have. I refer to me as having a very rare syndrome so rare that it makes me more special than all the rest. We all stand in a small group with Romberg’s with the hope that one day they will find out what has caused this, why it happened and of course a cure or some other treatment than surgery. I will be writing a story on Romberg’s in the Dessert Warrior here in Yuma, I am doing an awareness on Romberg’s so people like us who has changes going on with there face may know that, hey, I might have this! I am also doing this so the word can get out in my area and that we can be recognized not just threw civilian world but threw the military world also. And last, for me! Sherree>
32) January 13 2005 - 18:43
Name: Crystal
Location: Toledo, Ohio
I was diagnosed with Rhomberg's at the age of 10. Before that the doctor either would tell my mom that she was just imagining that I looked differently, or that I had to have Bell' Palsy. After 4 years of my mother dissagreeing I finally got to see a neurologist who then reffered me to a plastic surgeon. At the age of 16 after fighting with the insurance company for 6 years to proove that the surgery was not cosmetic I was granted my first of four surgeries. It was the most painfull and mental trying thing that I have ever gone through. I went over night from being in modeling soiws and going out with my friends to being a monster. I hated myself for many years. The first surgery took 18 hours and I ws not one of the lucky ones that got the implants. Instead I had a flab of skin,muscle,vessels, and fat taken from my left shoulder blade and put in my face. After four hours in recovery I regained concoiusness in the most horrible pain that anyone could ever imagine. The first thing I saw when I woke up was my mom sobbing. The left side of my face had swollen to close to 6 times the normal size. I truly was a monster. But without the surgery I would have become one eventually. I stayed in the hospital for 2 weeks, and was then released into my mothers care. I was not allowed to go outside for 6 months afterwards because the flap that was inserted into my face couldn't have any toxins around. Essentially i lived in a bubble. The second surgery was to rework the scar on my back and also remove all my drainage tubes. The third was to do liposuction to take out the excess taht could be removed that way. The fourth was the same. Now I am 21, and am still not fully done with my surgeries. I have one more to go , and I go to see my surgeon next month. This one should be the final surgery, and it will be to make my face perfectly symetrical. I can honestly say that going through my surgeries is probably the hardest thin I will ever have to do, but I am glad I did it. My surgeon is wonderfull, and I highly reccomend him if you need surgery for this disease done. His name is dr. Lawrence Buyback, and he is located in Maumee Ohio. I am planning on attending the conference in June, and I hope others are as well. It's just nice to finally know that I am not the only one. -Crystal
31) August 02 2004 - 20:00
Name: Katina
Location: Los Angeles, CA
Wow, at age 34, you would think I could have found this site sooner. I was diagnosed with PRS at age 15 and had the misfortune of believing that surgery was the solution. After bouncing from dr. to dr., state to state, and finally finding a doctor in my own backyard (at the time in Dallas) who actually had seen many cases of PRS, I thought I had found my saviour. Dr. Kenneth Salyer is the head at the International Craniofacial Institute, and is a wonderful doctor. He knows more and understands more about this "affliction" (I'm still in denial about it being a disease) than any other physician I have found. The only negative part is that know matter how much or how little surgery you have, it will never be "perfect" and after 20+ surgeries over the past 20 years, I still somehow manage to be disappointed. I have often thought that things might somehow be better if I had never had any surgery. But, I guess it is always easy to second guess decisions about something that is so rare. Fortunately, I am happily married and have a beautiful 3 year old daughter. They are what keep me going and rebounding from those "Oh woe is me" moments. I would, however, love to hear from anyone who has children, to find out if they also received any teasing about the way their Mommy/Daddy looks. I have been able to build a wall around my own feelings, however am not sure how I would handle my child have to deal with the consequenses of this horrible thing. Up to this point, she doesn't see me as being different, but I know that there will come a time that it is pointed out to her. I just don't want her to resent me or be embarressed by me. Anyway, I am grateful to have found this site and would love to hear from anyone who has dealt with these issues. Kind Regards, Katina
30) July 20 2004 - 02:45
Name: Tricia
Location: Maine
This disease/syndrome will takes it's toll on so many of us. We will cry, feel scared and feel lost. This is a scary thing to deal with. I was alone until I found this site. Thank you all who have put the time and effort in to help those you didn't even know. Thank you to all that will be strong when one of us feels weak! May whom ever it is you believe in be there for all of us. And dear God, let them please find a cure for the next generation! I would feel better knowing my disease has helped them find that cure! Best of luck to anyone effected one way or another. Smile.
29) June 17 2004 - 04:28
Name: Cassandra
Location: Las Vegas, New Mexico
I have a daughter with Rhomberg disease. I would like to share some thoughts with you all......Cass!
28) February 16 2004 - 17:24
Name: Isabelle
Location: Belgium
I'have found your messages onthe Romberg Connection website. First of all, thank you for your messages ! I don't know exactly when I was diagnosed with romberg disease. I had had an accident when I was 2 or 3 ???????????? my parents thought my disfigured face was caused from this - I'm french speaker, so sorry if make many mistakes in english ! - I'have been in contact with several doctors . I think that a surgeon has talked about Romberg when I was between 12 and 15. I had a plastic surgery at this time. Last year I have gone to another surgeon in Belgium. I'm now 30. In September last year I had exstensice surgery (I don't know how to explain it in English) - they extended my upper jawbone. Now I have problems with my teeth - I will probably loose 3 or more. This is a first surgery, I should have another to line up the hole side of my face by moving bone. I'm sure it is better to do something ....
Thanks a lot for this web site - you can contact me

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