The Romberg's Connection Surgery Guestbook

85) April 29, 2013 - 23:40
Name: Pip
Location: New South Wales, Australia
E-mail:
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:
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:
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:
Comments:
A helpful resource thanks so much.

t201sm@hotmail.com

80) November 17, 2012 - 07:28
Name: Ron
Location:
E-mail:
Comments:
Looking at surgery options.
79) October 16, 2012 - 01:30
Name: Dolus
Location: NYC
E-mail:
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:
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.
77) June 18, 2012 - 08:48
Name: Cynthia
Location: Maryland
E-mail:
Comments:
Hello,

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:
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:
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:
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
73) January 2, 2012 - 16:23
Name: Noa
Location: Israel
E-mail:
Comments:
So there are other people like me! I have PRS since I was 15. I had a free flap transplant (which had failed) when I was 21. I am now 29.
6 months ago I had fat injection/ fat grafting (not sure how you call it). That didn't really take... so I did it again 2 weeks ago and I look good for the time beeing! can post photos if you like (sorry about my english it's not my native language)

72) January 2, 2012 - 01:19
Name: Jennifer
Location: Elizabeth, NJ
E-mail:
Comments:
Hi 52yr F that was diagonsis with Triageminal Neuralgia and Parry Romberg Syndrome which i dont understand cause i"m not in the age group. I will be having a skin bisopy on 1/11/12 to see if i also have scelderma. All this is attribute to a root canal that dentist started couldnt finish so they pulled my tooth. My face swolled up for 10dys story short i have right cheeck sinking in. Maxofacil Suregeon told me i lost muscle and tissue. My Neurogist is the one that diagonis me.
71) December 1, 2011 - 07:14
Name: Frank
Location: London
E-mail:
Comments:
Nice site i like it.
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