The Romberg's Connection Surgery Guestbook

68) May 08 2011 - 09:36
Name: jenn
Location: michigan
E-mail:
Comments:
Just wondering about pregnancy and PR. I definitely want to have a child, but at 37 time is getting short. I had recently read in the anne stone survey that 68% of the women in this (small scale) survey reported worsening of PR with onset of pregnancy or post preg. I just don't know if I can bear loosing any more of my face. I was just curious about other PR moms experiences and if the are any possible drugs IE immune suppessants that one could take that would forestall or prevent worseing of the symptoms. Thx jenn
67) May 07 2011 - 13:51
Name: Marilyn
Location: Iowa, USA
E-mail:
Comments:
Hi Jenn, Thanks for signing our Surgery Guest Book. If Rombergs is a part of your life or it affects someone you care about, please e-mail me. We would like to have you join us. Marilyn
66) May 07 2011 - 06:17
Name: jenn
Location: western michigan
E-mail:
Comments:

65) March 28 2011 - 11:48
Name: Heather
Location: Victoria, Australia
E-mail:
Comments:
Hi Marilyn and other members. It's been a while since I last contacted you! To refresh, I had a free flap in 2004, a lip fat transfer, wedge resection, sculpting of the free flap followed by 2 fat injections - the last in January of this year. All has gone well with a few minor complications. My surgeon, world renoun has now performed the first hand transplant in Australia. I am so greatful to him and for where I am now with the outcome.
kind thoughts,
Heather

64) August 02 2010 - 14:02
Name: becky
Location: uk
E-mail:
Comments:
Well I had my appointment with consultant DR Kahn at Sailsbury Hospital, Wiltshire. He has answered my prayers.....I could have kissed him when he said I can help you! He has said fat transfer is the way to go under general anesethic ! He was not in agreement of my previous private surgeon I had seen before as he had given me treatments of newfill injections, which he said are no good and have left me having scar tissue.....Dr Kahn told me that he can sort this for me as well. Forgot to ask how long op is?
63) June 05 2010 - 15:53:31
Name: rebecca
Location: uk
E-mail:
Comments:
well I was diagnosed with parry romberg syndrome at the age of 26yrs and am now 31. I have had 4 sets of New Fill injections around the affected area which is around my chin and lower of my cheek area. The injections encourage your body to produce your own collagen in the affected area. Well it has filled out slightly, although not symmetrical. My consultant said injections are best way to do this. Although I really feel I don't have a treatment plan as such and wonder if there is something better I can be offered? I do pay for the injections I have had to pay £350 a time. NHS would not fund me originally. I believe I have become more parinoid about my appearance over the last few years...making sure my hair is correct to cover the area of my face, hair colour has to be correct as well so not to draw attention to my face....feel like people look at you and wonder what happened....I am so sensative about making sure everything looks relatively ok especially hair as this makes me feel less vunerable to the world. I feel the consultant I am currently under does not know enough to offer me other treatments? Can anyone suggest or offer advice of what I can do? I am planning a trip to the GP to discuss if they can help me identify other avenues avavilable if any at all on the NHS. I would appreciate any comments/advice names of uk consultants??? Thank you
62) March 26 2010 - 19:41
Name: jenna
Location: scotland
E-mail:
Comments:
I have suffered from what i beleive is parry's (as i like to call it ) since i was 7, i was diagnosed with scloderma when i was 7 but dont believe that to be the condition.
I have suffered the bullies, the taunts and jibes from people at school and high school, i left when i was 16 went to college and got a law degree i am now self sufficient but still depressed! sometimes i wonder why bother, it just cant seem to get people to take me seriously with a face like this. I have often thouguth about ending it!!
I recently had fat injections transferred into the left side of my face to correct the discolouration and help build up the fat to my face, i do however see a difference in the colouration to that side of my face but the unsymetrical side is still there. Can anyone help me even email me with suggestions

61) January 19 2010 - 23:44
Name: Jonathan
Location: New York
E-mail:
Comments:
Hello,
I was diagnosed with prs when I was in my mid teens. Previously, I was diagnosed with Scleraderma. Aside from the cosmetic issues, the vision in my right eye is very poor, my jaw has issues, teeth are not aligned and I've had some breathing issues with my nose. I do experience pain in that side of my face now and then but nothing severe. I think the trauma of looking different and having other kids and later adults treat you differently because of it was the most damaging.
It caused me to become very sensitive and self-aware.
I'm currently enrolled in a graduate program for social work with an interest in clinical psychotherapy.
I've always been a pretty good listener and am very empathetic...probably because of my experience with prs.
I underwent reconstructive surgery when i was 17 and 18 y.o. A stomach muscle was used to fill out my face and my nose and side of my lip were also worked on. I've since had some more work on my nose. The results were not perfect but overall made me feel much better about myself. I've learned to live with it though I still deal with insecurities because of it and probably will the rest of my life...at the same time it's made me the person I am today and I'm happy about that. I've gained a lot of personal strength...(though I have my issues off course)
If you'd like to talk to me or ask me any questions please feel free.
Jonathan

60) December 30 2009 - 13:20
Name: Ann
Location: Utah, USA
E-mail:
Comments:
I am a 30 year old female who just found a doctor (last month) that could identify what was happening to my face. I noticed it starting around age 18. He suggested surgery right off the bat, but I asking any advice or help from people who have already gone through with this. Where can I find more information and a doctor that knows all the details and can help me the best. Any advice or suggestions would be greatly appreciated.
Thanks, Ann

59) September 23 2009 - 23:47
Name: Peggy
Location: Kentucky USA
E-mail:
Comments:
I would like to meet with others that suffer from PRS. I have never meet anyone else with this. I was diagnosed at the age of 13 and I am now 35 and had 8-9 operations the last when I was 17. This email address is my mother's but someone please contact me.
58) July 08 2009 - 20:20
Name: Fred S
Location: Vancouver BC
E-mail:
Comments:
Hi my name is Fred and I have a story on the site.
I had a dermal graft 3 yrs ago and Every thing went well but now as my surgeon said the graft muscle and fat have absorbed more than they thought. And my headaches are surfaceing again and aching on my fore head. Anyone have any suggestions or comments i'd love to know

Thanking you
Fred

57) May 04 2009 - 14:49
Name: Josie(·ë¼Ñ³½)
Location: Shanghai China
E-mail:
Comments:
Nice to meet you ^_^
I want to know "Parry-Romberg syndorme" a lot.
(I'm sorry , My English is poor.)
Now I'll try my best to learn English .
Everything will be all right.^_^
´ó¼ÒÒ»Æð¼ÓÓÍ£¡

56) March 27 2009 - 19:44
Name: Maria
Location: Eagle Pass, Texas United States
E-mail:
Comments:
I believe I am suffering with Ramberg's Disease cause one side of my face if larger than the other side, I believe there is no cure but would insurance cover for plastic surgery?
55) February 22 2009 - 18:45
Name: Diana
Location: Portland, OR
E-mail:
Comments:
I am wondering about medical insurance. I don't have any, but am now wanting to purchase some. What insurance plans will cover the cost of surgery, or neurological work, associated with Romberg's? Any suggestions are great; I just don't know where to start. Many thanks, Diana.
54) February 07 2009 - 18:13
Name: rachel
Location: southyorkshire
E-mail:
Comments:
i have had prs for over ten years late on in ny twenties i would like to get to know share the ups and downs of prs iam willing to talk about my ops .and does anyone else hide behind suglasses.x
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