The Romberg's Connection 2009 Survey Results

Surgery

Page 92. V. Treatment for Rombergs cont.: Surgery (page 1 of 7)
1. Please select the type of surgery that the affected person has had:
Type of Surgery Responses
(146)		 % of Number responding
Artificial implants 9
16%
Bone implant 7
12%
Eye 11
19%
Fat graft 21
36%
Fat injections 25
43%
Free flap or flap procedure 9
16%
Free flap or flap procedure with microvascular surgery 21
36%
Injection of artificial material 11
19%
Jaw reconstruction 6
10%
Nose 12
21%
Revision surgery 14
24%
Number responding = 58 / percent responding = 41% of total respondents (143).
Note: This was a multiple choice question.




Page 92. V. Treatment for Rombergs cont.: Surgery (page 1 of 7)
2. For "Other" surgeries, please enter:
Other Surgeries Responses
(37)		 % of Number responding
artificial implant on right upper eyebrow--orbit 1
5%
eyelid surgergy to correct previous surgery 1
5%
lower implant of orbit and temple 1
5%
fat injections 1
5%
reconstructive-free flap procedure 1
5%
forehead 1
5%
Small multiple Reconstructive Facial Surgeries 1
5%
Many surgeries 1
5%
SILICONE IMPLANTED IN MY FOREHEAD 1
5%
Revision & fat injection 1
5%
Free flap microvascular surgery - implant on cheek bone 1
5%
Revision & fat injection 1
5%
Sculptra 1
5%
botox injections to ease the double vision 1
5%
liposuction to reduce the muscle after free flap 1
5%
Free flap 1
5%
Fat graft 1
5%
my surgery 1
5%
a smaller surgery on my upper lip when I was a child 1
5%
debulking graft 1
5%
lifting graft 1
5%
cartilage taken from under the right breast and implanted in the right cheek 1
5%
My first surgery 1
5%
My second surgery (eye brow ) 1
5%
My third was fat injections 1
5%
trapano parietal posterior izquierdo at age 3 1
5%
Remove some dying tissue on his face 1
5%
Repair donor site on his belly after Mitch tore it open 1
5%
bone graft and dental implants 1
5%
Dr. rebuilt eye socket using bone grafts from my scalp 1
5%
lower left eyelid was revised using cartilege from my right ear 1
5%
bald spot on En coup de sabre was excised and edges sewn together 1
5%
Dr. pulled eyebrow together and sewed it in hopes of getting rid of bald spot in it 1
5%
She has had only one surgery in 2001. 1
5%
laser treatment for discoloration (did not work) 1
5%
leather skin transplant 1
5%
brain surgery for removal of lesions 1
5%
Number responding = 21 / percent responding = 15% of total respondents (143).
Note: This was a multiple choice question.

Note: For the rest of this Surgery section, only the first few
words of the "Other Surgeries" will be shown.




Page 93. V. Treatment for Rombergs cont.: Surgery (page 2 of 7)
1. Please select the number of surgeries:
Surgery Responses
(174)		   1     2     3     4     5     6     7     8     9     10   More than 10
Artificial implants 10 63% (7) 18% (2)   9% (1)              
Bone implant 7 85% (6) 14% (1)                  
Eye 11 45% (5) 9% (1)   36% (4)     9% (1)        
Fat graft 21 52% (11) 33% (7) 4% (1) 4% (1) 4% (1)            
Fat injections 26 34% (9) 42% (11) 15% (4) 7% (2)              
Free flap or flap procedure 9 37% (6) 18% (3)                  
Free flap or flap procedure with microvascular surgery 22 72% (16) 13% (3)   9% (2) 4% (1)            
Injection of artificial material 13 7% (1) 15% (2) 7% (1) 15% (2) 15% (2)   15% (2)       23% (3)
Jaw reconstruction 6 50% (3) 50% (3)                  
Nose 12 83% (10) 8% (1) 8% (1)                
Revision surgery 17 41% (7) 23% (4) 29% (5)   5% (1)            
List of "Other Surgeries" Follows
Surgery Responses
(174)		   1     2     3     4     5     6     7     8     9     10   More than 10
artificial implant on….                        
eyelid surgergy to….                        
lower implant of o….                        
fat injections                        
reconstructive-fre….                        
forehead 1 100% (1)                    
Small multiple R…. 1                   100% (1)  
Many surgeries 1 100% (1)                    
SILICONE IMP…. 1 100% (1)                    
Revision & fat…2                        
Free flap micro….                        
Revision & fat…1                        
Sculptra 1   100% (1)                  
botox injections….                        
liposuction to….                        
Free flap                        
Fat graft                        
my surgery 1 100% (1)                    
Surgery Responses
(174)		   1     2     3     4     5     6     7     8     9     10   More than 10
a smaller su…. 1 100% (1)                    
debulking graft 1 100% (1)                    
lifting graft 1 100% (1)                    
cartilage taken…. 1   100% (1)                  
My first surgery                        
My second su….                        
My third was fat….                        
trapano parietal…. 1 100% (1)                    
Remove some…. 1 100% (1)                    
Repair donor…. 1 100% (1)                    
bone graft and…. 1 100% (1)                    
Dr. rebuilt eye…. 1 100% (1)                    
lower left eyelid…. 1 100% (1)                    
bald spot on En…. 1 100% (1)                    
Dr. pulled eye….                        
She has had o….                        
laser treatment…. 1 100% (1)                    
leather skin tra…. 1 100% (1)                    
brain surgery…. 1     100% (1)                
Surgery Responses
(174)		   1     2     3     4     5     6     7     8     9     10   More than 10
Number responding = 60 / percent responding = 42% of total respondents (143).
Note: This was a multiple choice question.




Page 94. V. Treatment for Rombergs cont.: Surgery (page 3 of 7)
1. Please enter the number of surgeries if the number of surgeries is more than 10:
Surgery Responses
(18)		 Number of Surgeries Is More Than 10
Artificial implants 2 1, 4
Bone implant 1 to straighten my arch of upper teeth
Eye 1 lifting lower lid
Fat graft 1 1
Fat injections 3 15, 2, 2
Free flap or flap procedure 1 1
Free flap or flap procedure with microvascular surgery 4 1, 1, 1, 1
Injection of artificial material 3
Straight silicone injections over a period of 3 years
Several tiny injections are done to fill the indentation or correct asymmetry.
no idea - went on for years as a child
Jaw reconstruction    
Nose    
Revision surgery 1 debulking graft
List of "Other Surgeries" Follows
Surgery Responses
(18)		 Number of Surgeries Is More Than 10
artificial implant on….    
eyelid surgergy to….    
lower implant of o….    
fat injections    
reconstructive-fre….    
forehead    
Small multiple R….    
Many surgeries    
SILICONE IMP….    
Revision & fat…2    
Free flap micro….    
Revision & fat…1    
Sculptra    
botox injections….    
liposuction to….    
Free flap    
Fat graft    
my surgery    
Surgery Responses
(18)		 Number of Surgeries Is More Than 10
a smaller su….    
debulking graft 1 lifting graft
lifting graft    
cartilage taken….    
My first surgery    
My second su….    
My third was fat….    
trapano parietal….    
Remove some….    
Repair donor….    
bone graft and….    
Dr. rebuilt eye….    
lower left eyelid….    
bald spot on En….    
Dr. pulled eye….    
She has had o….    
laser treatment….    
leather skin tra….    
brain surgery….    
Surgery Responses
(18)		 Number of Surgeries Is More Than 10
Number responding = 9 / percent responding = 6% of total respondents (143).
Note: This was a multiple choice question.




Page 95. V. Treatment for Rombergs cont.: Surgery (page 4 of 7)
1. Please enter the age of the person when this surgery was performed:
Surgery Responses
(136)		 Age When This Surgery Was Performed
Artificial implants 10 Just under 18, 32 & 33, 14, 17 years old, 16 - 20, 17, 22, 48, 15, 24
Bone implant 6 17, 15, 17, 12, 22, 13 and 16
Eye 9 17, 17, 15 - 18 - 22, 52, 51, Ages varied from 25 - 65, 50 - 51 - 52, 30, 38 and 39
Fat graft 14 30, Just under 18, 38, 24, 11, 20, 17, 12 and 15, 9, 21, 29, (36, 37, 38, 39, 40), (14, 15, 16), 21
Fat injections 21 56 and 57, 30, 17, 15 and 16, 33 and 34, 32 and 33, 28, 32, 16, 9 and 10, (24, 25, 26), First: 70 and Second: 70, 49 and 49, 22 and 32, (10, 11, 14, 20), 29, 21, 28 and 30, 49 and 50, 15.5 and 16.5, 34
Free flap or flap procedure 7 17, 14, 12 - 17, 19, 13 and 15, 30, 21
Free flap or flap procedure with microvascular surgery 18 28, 16, 15 and 16, 16, 36, 24 or 25, 12, 45, 23, 41, 13, 34, 32, 12, (37, 38, 39, 40), 48, 23, 15
Injection of artificial material 8 (18, 19, 20, 21, 22, 23, 24, 25, 26, 27, 28, 29), (36, 37, 38, 39), 13 - 16, (22, 23, 24), 14, collagen, 24, 14 and 15
Jaw reconstruction 4 15, 14, 17, 13 and 16
Nose 8 22, 15, 16, 18, 19, (14, 16, 48), 28, 32
Revision surgery 13 18, 37, 25 and 26, 12, 22 and 32, 22 - 24, 18, 13 and 13, (35, 36, 37), (14, 15, 16), 49 and 50, 30, 16.5
List of "Other Surgeries" Follows
Surgery Responses
(136)		 Age When This Surgery Was Performed
artificial implant on….    
eyelid surgergy to….    
lower implant of o….    
fat injections    
reconstructive-fre….    
forehead 1 5
Small multiple R…. 1 23, 24, 25, 26, 27, 28, 30
Many surgeries    
SILICONE IMP…. 1 23
Revision & fat…2    
Free flap micro….    
Revision & fat…1    
Sculptra 1 27
botox injections….    
liposuction to….    
Free flap    
Fat graft    
my surgery 1 22
Surgery Responses
(136)		 Age When This Surgery Was Performed
a smaller su…. 1 11
debulking graft 1 45
lifting graft 1 46
cartilage taken…. 1 21
My first surgery    
My second su….    
My third was fat….    
trapano parietal…. 1 3
Remove some…. 1 12
Repair donor…. 1 12
bone graft and…. 1 51
Dr. rebuilt eye…. 1 33ish
lower left eyelid…. 1 34ish
bald spot on En…. 1 35ish
Dr. pulled eye….    
She has had o….    
laser treatment…. 1 28
leather skin tra…. 1 22
brain surgery….    
Surgery Responses
(136)		 Age When This Surgery Was Performed
Number responding = 54 / percent responding = 38% of total respondents (143).
Note: This was a multiple choice question.




Page 96. V. Treatment for Rombergs cont.: Surgery (page 5 of 7)
1. Please provide a brief description of the surgery:
Surgery Responses
(117)		 Description of the Surgery
Artificial implants 10
small cheek implant
Upper cheek. Artificial material is H something something. (three letters - I forget exactly)
Implanted titanium into the chin area and injected fat into the cheek.
Plastic cheek bone implanted
took tissue from my breast to implant in face... tissue rejected
2 attempts, both taken out after repulsion (?)
a silicone implant was placed in my forehead
Methylmethacrolate to forehead and temple
Small implant during initial free flap
upper eyebrow - orbit of eye
Bone implant 3
bone graft from left hip to right forehead
bone from skull transfered to forehead and cheek bone
Moved my cheek bone to where it should be and implanted bone behind.
Eye 8
lift eyelid
leather skin transplant
During strabismus surgery the eyelid has a suture installed to raise the eyelid.
lifting lower lid
Eye muscle & scleral graft and eyelid lifts.
2 squint to get the eye straight, cataract removed, detached retina was folded over
PRK eye Surgery
squint surgery and both eyes fixed into position to correct double vision
Fat graft 14
Fat removed from right butt and inserted into right check & jaw through same incision along front of right ear.
Fat was taken from my stomach and implanted into my cheek.
fat taken from bottom
from her stomach.
fat graft was taken from my groin area and put in by layers into the cheek
fat taken from buttock and inserted into cheek and chin
from hip/groin area to lip. Mostly reabsorbed and didn't work
fat taken from buttocks area and inserted in cheek
from lower abdomen to cheek area and lower forehead left side
did not last, fat was reabsorbed within 3 months
Fat was taken from the inside of my knees and injected into my face. Need 2 or 3 more procedures depending on how much fat stays. Improvement can be seen.
thigh and groin fat used to reconstruct cheek, lip and temple
Fat from groin area placed in chin, tissue from inside cheek placed in lip
taken from hip and grafted to side
Fat injections 17
fat injections to left and right face and chin
2 Fat injections, one month apart, fat was reabsorbed but color of skin better.
fat liposuction taken from thighs then put all over my face in small amounts
butt tissue injected into jaw
dissappeared after a few weeks
fat transfer from stomach to cheek
removed from my stomach and injected into the cheek twice. Reabosrbed once and infected the second time.
Dr. harvested from my tummy, spun it in centrifuge, injected it- painful!!!
fat transer to left cheek using fat from my abdomen
Fat liposucted from knees and injected in cheek and lips. Completely reabsorbed, didn't work.
June 2008: Hospital under general anesthesia. Fat from stomach was injected into right side of face.... side of face, cheek and chin. Second set in January 2009. In-office procedure...fat injected into side of face in area in which fat from previous procedure had been reabsorbed.
Fat was taken from various parts of the body and injected into various parts of the face (after it was spun out etc)
tissue from abdomen x2
forehead and cheek
in scalp, forehead and nose
to remove excess tissue and redistribute transferred tissue
taken from abdominal and placed in cheek and upper lip area
Free flap or flap procedure 4
done at age 17 first surgery
removal of area on cheek and grafted to nose
they shaved part of my skull from the back and brought it to my forehead
taken from my head to my chin
Free flap or flap procedure with microvascular surgery 17
Galial scalp flap: Section of scalp inserted into right check & jaw through incision along front of right ear.
silicone was removed and 4 fatty grafts were implanted
Blood vessels removed and implanted in face (taken from back of shoulder down around the under arm area).
tissue taken from shoulder
flap taken from groin and inserted into cheek, top lip and chin. supplied with blood from vein in neck
flap from scapular area- hooked up blood vessels, etc., used bolsters to hold flap in place
tissue transferred from groin
after soft tissue was implanted, free flap was used to fill in space
free flap from my upper leg (sorry for my English)
flap from shoulder blade area
took muscle from my chest and skin from my leg and transplanted into my face
A flap was removed from my left thigh to my face.
Done 12/15/2008 with Dr Siebert, New York University; flap from back implanted right side of face/cheek.
Took shoulder muscle to implant into the cheek, Surgeon put too much in and I had to have 3 more surgeries to remove excess tissue
tissue taken from uppper right thigh and transferred into right cheek and chin
Surgery on left side of face
major initial surgery - tissue taken from shoulder area
Injection of artificial material 10
Restylane
stays, but get clogged and moves around
Sculptra on forehead and cheek - 2 sessions
Radiesse injections
Bio Alcamid has lasted, Radiance dissolved within 3 months
injections of PMMA (poly methyl methacrolate) in different areas: chin, cheek, under eyes, temple, with revisions
When I was 14 years old I was given 'liquid silicone injections' by a doctor who was licensed by the government to experiment with this procedure on people with facial abnormalities. With this procedure liquid silicone is injected directly into the tissue to fill out facial indentations caused by the Rombergs.
injections from age 7-15, 6 times a year or more to forehead and nose
Reconstructive surgery
Liquid silicone, head, chin
Jaw reconstruction 3
jaw straighten
removal of affected area on lip and gum, removal of teeth
Leforte osteotomy, sagital split osteotomy with plates and screws
Nose 6
part of lobe from left ear to enlarge right nostril
nose straighten
tried to make nose more symmetrical
removal of area in one cheek and grafted to nose
a small section of my right nostril was removed to make it smaller and then added to the left side to make it bigger
implant
Revision surgery 11
one fatty graft was infected and replaced
tissue taken out because of overfill
excess bulk from flap liposuctioned
had to de-bulk the flap like 3 times to contour it to get it right...
debulking graft
more fat grafts and injections done
tidy up of lip scarring
debulking the graft
to remove excess tissue and redistribute transferred tissue
PRK (photorefractive keratectomy) eye surgery
6 months post initial surgery & another revision 2 years later
List of "Other Surgeries" Follows
Surgery Responses
(117)		 Description of the Surgery
artificial implant on….    
eyelid surgergy to….    
lower implant of o….    
fat injections    
reconstructive-fre….    
forehead 1 Cutting away of discolored En coup de sabre mark on forehead
Small multiple R…. 1 Cutting away of discolored En coup de sabre mark on forehead
Many surgeries    
SILICONE IMP…. 1 SEE PRIOR ANSWER
Revision & fat…2    
Free flap micro….    
Revision & fat…1    
Sculptra    
botox injections….    
liposuction to….    
Free flap    
Fat graft    
my surgery 1 "z" incision on chin to relieve skin tightness
a smaller su…. 1 A small piece of tissue was removed from + to my upper lip
debulking graft 1 lifting graft
lifting graft    
cartilage taken…. 1 cartilage from under right breast put in right cheek
My first surgery    
My second su….    
My third was fat….    
trapano parietal…. 1 "tarpano parietal posterior izquierda"
Remove some….    
Repair donor….    
bone graft and…. 1 Bone harvested from good side of jaw and put into affected side. When it had taken, I was able to have dental implants put in.
Dr. rebuilt eye…. 1 Dr. excised bald spot from en coup de sabre, and sewed bald spot together in eyebrow
lower left eyelid…. 1 used bone grafts to rebuild eye socket on PRS side
bald spot on En…. 1 Used cartilege from right ear to rebuild lower left PRS eyelid which had issues
Dr. pulled eye….    
She has had o….    
laser treatment…. 1 did not work
leather skin tra…. 1 leather skin transplant
brain surgery….    
Surgery Responses
(117)		 Description of the Surgery
Number responding = 50 / percent responding = 35% of total respondents (143).
Note: This was a multiple choice question.




Page 97. V. Treatment for Rombergs cont.: Surgery (page 6 of 7)
1. Please rate the outcome of this surgery:
Surgery Responses
(148)		 No Change  Some Improvement Good Improvement Great Improvement Total Improvement
Artificial implants 10 20% (2) 10% (1) 50% (5) 10% (1) 10% (1)
Bone implant 6   50% (3) 16% (1) 16% (1) 16% (1)
Eye 10   40% (4) 20% (2) 30% (3) 10% (1)
Fat graft 17 11% (2) 38% (7) 22% (4) 22% (4)  
Fat injections 24 12% (3) 29% (7) 33% (8) 8% (2) 16% (4)
Free flap or flap procedure 8 13% (1) 13% (1) 75% (6)    
Free flap or flap procedure with microvascular surgery 19 5% (1) 10% (2) 15% (3) 57% (11) 10% (2)
Injection of artificial material 10 20% (2) 40% (4)   30% (3) 10% (1)
Jaw reconstruction 4   50% (2)   50% (2)  
Nose 10   60% (6) 30% (3) 10% (1)  
Revision surgery 15   26% (4) 13% (2) 40% (6) 20% (3)
List of "Other Surgeries" Follows
Surgery Responses
(148)		 No Change  Some Improvement Good Improvement Great Improvement Total Improvement
artificial implant on….            
eyelid surgergy to….            
lower implant of o….            
fat injections            
reconstructive-fre….            
forehead 1 100% (1)        
Small multiple R…. 1         100% (1)
Many surgeries            
SILICONE IMP….            
Revision & fat…2            
Free flap micro….            
Revision & fat…1            
Sculptra            
botox injections….            
liposuction to….            
Free flap            
Fat graft            
my surgery 1   100% (1)      
a smaller su….            
debulking graft 1     100% (1)    
lifting graft 1   100% (1)      
cartilage taken…. 1   100% (1)      
My first surgery            
My second su….            
My third was fat….            
trapano parietal…. 1   &100% (1)      
Remove some…. 1         100% (1)
Repair donor…. 1         100% (1)
bone graft and…. 1         100% (1)
Dr. rebuilt eye…. 1       100% (1)  
lower left eyelid…. 1       100% (1)  
bald spot on En…. 1       100% (1)  
Dr. pulled eye….            
She has had o….            
laser treatment…. 1 100% (1)        
leather skin tra…. 1   100% (1)      
brain surgery….            
Surgery Responses
(148)		 No Change  Some Improvement Good Improvement Great Improvement Total Improvement
Number responding = 59 / percent responding = 41% of total respondents (143).
Note: This was a multiple choice question.




Page 98. V. Treatment for Rombergs cont.: Surgery (page 7 of 7)
1. Any suggestions that you would like to pass on:
Responses
(20)
Begin with fat injections, then proceed to reconstruction.
Seek advice from as many health care professionals who have had experience in dealing with PR . Seek support and advice from people who have experiences themselves. Do not travel this road alone.
Surgery is a lot to go through. Rely on those who love you, to help you get through it.
Before thinking on Surgery, make sure the Rombergs is not active.
Do not get liquid silicone injections. They're dangerous. The material moves and hardens, causing further disfigurement. It is difficult, if not impossible, to remove from the tissue once injected.

I have experienced terrible 'infections' (?) around the main site of the liquid silicone injections. This started happening 23 years after the procedure was done. These 'infections' are debilitating when they occur, needing several months to recover. What happens is the area around the silicone begins to swell and there is a localized pain that is different than a 'dent' headache. There is an intense fatigue and sometimes I am nearly unable to move as my body feels as though it is moving through sludge. The strain in my left eye becomes more pronounced causing pain and redness. The joints in my hands, and sometimes my ankles, become inflamed with a searing pain, and I get painful tongue ulcers. When this silicone related 'infection' happens doctors have tried antibiotics, but that has proven unsuccessful as a treatment. What I have learned to do as a "treatment" is when I first start to notice these symptoms begin, I rest a lot and keep myself clear of stress as much as possible. I double - up on multi- vitamins and eat spicy foods (more on that remedy later). This approach seems to help manage the severity and duration of the silicone 'infection' problem.
Since my son still has a 2nd surgery to complete the process, it is hard to determine the final outcome of the surgery at this point. The flap was successfully implanted though he had much swelling after the surgery and still does, after about 10 weeks. It is our hope that this will stop the progression of PRS, it's why we chose this route.
I would suggest waiting to make sure the Rombergs is in remission before doing any surgeries.
The PMMA injections (poly methyl methacrolate) are not recommended by many surgeons. However they are definitive, cheap, they are used for HIV patients with lipodistrophy. There was certain degree of reabsorption but even though, the injections were a great success.
Free flap transplant was hard but worth it.
After that it was too much fat but with lipolyse I'm getting close to an amazing result.
Remember this, if people like you, they like for who you are, not what you look like.
Live life to the fullest. There is always someone who is worse off than you.
With every surgery you gain some, yet lose some, or else makes something else worse.
For me, fat injections worked the best.
Do your homework with surgeons!! It's important to chose one who understands and has experience with Parry Romberg Syndrome.

If patient is a child, be sure that they understand what the surgery is all about. Give the child choices and time to contemplate. We would recommend that the child be old enough to make their OWN informed decision, unless medically necessary.
Dental implants are expensive but have made such a difference.
Some of the questions were confusing... about en coup de sabre - was the progression question about progression of Rombergs or the en coup de sabre? I might have answered it wrong, sorry!
I can't think of any, but I'm sure that I will after I finish this...
It seems so many things have been done and almost nothing was succesful. But after many surgeries, I felt happy and even pretty enough, but then the symptoms worsened, without any cause.
Since I am older now, if I need to have a fatty graft replaced I am considering some type of injections to be done. The graft surgery is too lengthy and is painful. I just don't know if I can go through another long surgery again.
Do not have surgery until you are sure the Romberg has burnt itself out, which is still a risk, because some cases don't.
Number responding = 20 / percent responding = 14% of total respondents (143).




Page 98. V. Treatment for Rombergs cont.: Surgery (page 7 of 7)
2. Comments for Surgery:
Responses
(19)
Fat injections was successful but only for about a year. Free flap was most successful but a long way from perfect. Other surgeries were mostly corrective or to compensate for infections.
DON'T USE SILICONE. IT DOESN'T STAY IN PLACE. IT'S IN MY BODY SOMEWHERE, BUT I DON'T KNOW WHERE.
Initial surgery can be very daunting and a person needs time to heal and recover in every respect. There is never a 'right' time for surgery and it may not be the option for everybody. Difficult decison to make, so best to be very well informed.
Fat injections looked good for about 2 months and then reabsorbed.
Cheek implant helps, but I think it's too small.
Sculptra - had 2 sessions, and is a gradual acting material. Jury is still out on this one.
Before having surgery, ask as many questions as you think. It's too late after the procedure has been done.
It wasn't easy to watch our son go through such an invasive surgery but the alternative -- watching the atrophy of his face -- was unbearable. So if successful, I would highly recommend this option with Dr. Siebert and his staff at New York University.
My free flap surgery is not perfect but I did not regret anyway. I look prettier than before the surgery.
She will be having a free flap tissue graft in the next six months.
When I was younger, I was all set to do whatever it took to look better, even though it has progressed more now, I am weary about having more surgery, I have seen a plastic surgeon who wants to do several surgeries to help, but am afraid to get them done.
The surgery was very difficult and it took me a long time to recover. I felt it took me 10 full years to really feel like Rombergs wasn't the main focus of my life and that I looked wonderful.
Plastic surgery does not make you look like someone on extreme makeover but very grateful that the surgery seemed to halt progress or else would have eventually affected eye area.
Do your homework.
Satisified with the results.
I believe all the transplants have been reabsorbed.
Know when enough is enough although touch-ups may be necessary. Be realistic about outcome. Don't expect perfect results.
Will have to wait to see how much fat will be reabsorbed....
Quite a bit of fat was reabsorbed from first session of June 2008, and second session was only done in January 2009. Have follow up appointment with surgeon in July 2009.

I am very pleased with my progress to date....my face looks much better.
Fat injections are a relatively unobtrusive form of treatment, as the 'filler' is taken from your own body. When using an artificial filler, there is more chance that it can cause problems, be rejected, move around or behave in an unnatural way.
Terrifying, but you have to do it, just in case it makes the difference you long for.
The surgery took at first but then reabsorbed.
Number responding = 19 / percent responding = 13% of total respondents (143).


Disclaimer: Please be advised that everyone's experiences may be different and appropriate treatments may vary. Any medical information that you find on The Romberg's Connection website must NOT serve as a substitute for a consultation with one's personal physician. Our visitors should discuss any specific questions or concerns they may have about Rombergs with health care professionals who are familiar with the specifics of their special case.
As a support group, The Romberg's Connection is unable to offer medical advice to anyone.

Throughout this survey, when we use the term "Rombergs" or "Romberg" we are referring to: "Parry Romberg", "Parry Rombergs", "Parry Romberg Syndrome" and "PRS".

This is an unscientific survey designed to gather information from those who must deal with Rombergs on a daily basis.

Last Updated May 9, 2011