88) February 10, 2014 - 13:25 Name: Lisa Location: Belmar, NJ E-mail:leezamariehorton@yahoo.com Comments: Hi my name is Lisa I'm 49 years old I've had Rhombergs disease practically my whole life. It started when I was in first grade started with a pinhole dent in scalp on left side and progressed. I had plastic surgery when I was 17 they took fat from underneath my stomach and implanted it in my face they purposely put more fat in because it would be easier to take out excess fat verses major surgery to put more in. Life got busy never went back for any followup surgery. Now 30 years later I've noticed it looks swollen and I think I need a lifestyle lift but I don't think its that easy very self conscious in photos just want extra fat taken out. If anyone can relate to the situation I am in, it would be very nice to hear from anyone. I have gone through this my whole life and its time to make a change! I look forward to hearing any thoughts! Thank you
87) September 27, 2013 - 16:41 Name: I need some help Location: Texas E-mail:cookcherry@hotmail.com Comments: I'm looking for someone to answer some questions. I'm very frustrated that a lot neurologist don't even know what PA is. Email cookcherry@hotmail.com
86) May 9, 2013 - 18:25 Name: Pip Location: New South Wales, Australia E-mail:piprutherford1950@yahoo.com.au Comments: I have had a question from Fariba about what pain did I experience with trigeminal neuralgia. The pain was like a massive electric shock going through your face. Sometimes it could last for a few minutes or 10 minutes, each episode was different. The things that set it off were talking, eating, cleaning your teeth, washing your face, blowing your nose and even a slight breeze blowing onto your face. When I was at my worst I would have rated the pain 25 out of 10!!! It is now over 2 months since I had the operation and I am still pain free. If anyone has any questions please do not hesitate to contact me.
85) April 29, 2013 - 23:40 Name: Pip Location: New South Wales, Australia E-mail:piprutherford1950@yahoo.com.au Comments: Trigeminal neuralgia is one of the neurological side affects of PRS. I have been suffering from this neuralgia for at least 10 years and over the last 6 months the condition just became unbearable. I was on Tegratol which did help for awhile but I was becoming immuned to it so it was time to seek help from a specialist. I had all the symptoms of trigeminal neuralgia and my specialist offered me surgery. When I mentioned I had PRS my doctor was concerned because she had never heard of PRS and wanted to do some research before I accepted the surgery. She found no written information of anyone with PRS having an operation for trigeminal neuralgia. I decided to go ahead with the operation but was given only a 50% chance of success. The operation requires putting a spacer between the artery and nerve but in my case it was veins pressing on the nerve and they were cauterised. It is now 2 months since the operation and I have gone of all medication and haven't had any pain at all. This was one successful operation.
84) April 16, 2013 - 15:35 Name: concerned for you Location: wisconsin E-mail: Comments: For all of you looking for a Dr. please research Dr. John Siebert in Madison WI.
83) April 3, 2013 - 08:25 Name: Cindy Location: Louisiana E-mail:cindynpatchutz@gmail.com Comments: I am searching for a doctor who has treated Parry Romberg/LS En Coupe De Sabre. I have the neurological affects and until my face started " splitting" my doctors were stumped. My Rheumatologist said he will try to contact John Hopkins to find a specialist, but I don't have much faith. I'm hoping someone will be able to provide the name of a Neuro...Rheumatologist... whom you trust. Thanx!!!
82) January 17, 2013 - 10:20 Name: Jennifer Location: Ruston, LA E-mail:mana2916@yahoo.com Comments: I would be interested in joining your website. I am 44 years old was diagnosed with Parry-Romberg Syndrome when I was fifteen. I have never had surgery. I am seriously considering it. It would be nice to connect with others to discuss their treatments. Sincerely, Jennifer
81) November 17, 2012 - 07:31 Name: Tessie Location: E-mail:t201sm@hotmail.com Comments: A helpful resource thanks so much.
t201sm@hotmail.com
80) November 17, 2012 - 07:28 Name: Ron Location: E-mail:rondjohn@earthlink.net Comments: Looking at surgery options.
79) October 16, 2012 - 01:30 Name: Dolus Location: NYC E-mail:dolusbaxter@gmail.com Comments: Hi, thanks for this great resource. I'd like to ask - do you know what insurance options are available for US citizens in NYC to cover reconstructive surgery following a road accident? Asking on behalf of a friend. Thanks in advance for your help.
78) July 17, 2012 - 12:02 Name: Hollie Location: E-mail:Hollie9457@yahoo.com Comments: I am also looking for information on getting insurance to cover fat injections/ micro surgery or other cosmetic fillers. I have been living with this for 6 years and hiding behind it as much as I can with my hair. . . fed up and ready for freedom. I certainly cannot afford to do it without insurance. Has anyone been able to get insurance to cover their procedures? I'd love to hear from you, thanks a bunch.
Are there any medical grants available to help with the constant reconstruction costs? I like the fat transfers as they are the safest, look the most natural and last the longest. But even those must be done once a year-I do not have this type of money. Any suggestions?
76) April 13, 2012 - 05:23 Name: Pranali Location: India E-mail:pranalibhansali@yahoo.com Comments: At 18 i was told to wait if i ever wanted a surgery to be done, as they thought it would be better to opt for it once the progression ceases. Am 21 now, i want to go for surgery but before that i want to collect as much information that could help me go through it without much hurdles. Firstly, wanted to know the approx total cost of the reconstructive surgery in ndian Rupees.
75) January 8, 2012 - 21:12 Name: Ronda Location: GA E-mail:Bella197140@gmail.com Comments: Would like some information on how to go about having insurance cover the fat transfer or micro grafting.
74) January 3, 2012 - 04:04 Name: llynne Location: melbourne australia E-mail:chatlynne@yahoo.com.au Comments: hi there, im 45 years of age and was diagnosed with p.r last september after years of going to doctors, finally a surgeon diagnosed me, i am currentl on mx treatment before they consider surgery, has anyone had this surgery before, my surgeon told me it takes several operations, just want it fixed
Name: Lisa
Location: Belmar, NJ
E-mail: leezamariehorton@yahoo.com
Comments:
Hi my name is Lisa I'm 49 years old I've had Rhombergs disease practically my whole life. It started when I was in first grade started with a pinhole dent in scalp on left side and progressed. I had plastic surgery when I was 17 they took fat from underneath my stomach and implanted it in my face they purposely put more fat in because it would be easier to take out excess fat verses major surgery to put more in. Life got busy never went back for any followup surgery. Now 30 years later I've noticed it looks swollen and I think I need a lifestyle lift but I don't think its that easy very self conscious in photos just want extra fat taken out. If anyone can relate to the situation I am in, it would be very nice to hear from anyone. I have gone through this my whole life and its time to make a change! I look forward to hearing any thoughts! Thank you