The Romberg's Connection Surgery Guestbook

98) February 22, 2017 - 03:50
Name: amro
Location: istanbul
E-mail:
Comments:
hi all. Is there anyone who knows this clinic https://mcanhealth.com/en ?
97) October 24, 2016 - 10:57
Name: Vonda
Location: Houston
E-mail:
Comments:
Hello out there to all. Does anyone know of any doctors specializing in Parry Romberg Syndrome in Houston? I believe I have the syndrome, but my primary care physician tells me it is in my head and ignore it. I have Blue Cross PPO insurance.

Thanks :-)

96) September 13, 2016 - 03:34
Name: Becky
Location: Uk
E-mail:
Comments:
Dear All, I have signed here before....a few years ago. This syndrome appears not to affecting me cosmetically( which has improved with surgery). But now with an inflammatory liesionšŸ˜± On right frontal lobe. Why, why why? Why now I ask my self!?? I had tonic clinic seizures as a result of this in July. MRI imaging picked liesion up. Got slight bigger in size. Admitted to Southampton hospital.. To start steroids. Then the rescanned me and liesion started to reduced in size. So most steroids given and loads of tests stated ir : lumber puncture. I just want this thing gone! I am on keppra for seizures. Is anyone on additional meds? There is no specialist in this PRS and this in fact scares me to death about what the future holds. I have heard a lot of comments about PRS is rare and we know 10% of PRS sufferes can develop seizures. Also been told there is very little literature about this or evidence to show effective treatment, so unsure how to treat this side of things. They keep comparing it to MS sufferes, which I understand the behaviour of liesion has similar characteristics...I just want answers and my life back. Can't drive due to siezures and my job appears to be on line due to being off sick and inability to drive as my job involves driving. Sorry for rant. Any info would be appreciated. Love to you all. Becky, 37, uk. PRS since 2010.
95) March 13, 2016 - 21:38
Name: Amy
Location: Newcastle, NSW, AUSTRALIA
E-mail:
Comments:
Hi everyone,
I'm searching for a doctor anywhere in NSW that has seen Parry-Roberg before. If anyone could help me out that would be amazing!

Thank You

94) February 24, 2016 - 12:09
Name: Ashley
Location: hartsville.Tennessee
E-mail:
Comments:
I have parry Bromberg syndrome. Since I was 13 got finally got my answer when I was 22. I'm 24 now and trying to get started on help at vanderbilt university in tn. If there is anyone in tn please message me with any information you have with getting help in tn. Thanks
93) February 23, 2016 - 12:26
Name: Kayla
Location: Minnesota
E-mail:
Comments:
I was finally given the PRS diagnosis in 2012 when I was 25 after dealing with the "dent" since puberty and migraines for 10 years. It was a bittersweet moment. Happy to finally know what was wrong with me, sad that there isn't anything they could do, and that they knew next to nothing about it. I finally decided to contact Dr. John Siebert about getting my dent and sunken eye fixed because I never even want to leave the house. Scheduled for surgery on June 20, 2016. Feeling very nervous, scared, excited and relieved. Anyone have any words of encouragement, advice, etc?
92) January 25, 2016 - 03:16
Name: Jessica
Location: San Antonio
E-mail:
Comments:
I've had over 50 plus reconstructive surgeries and procedures. Now I'm 45 and would like to know if here are other PRS patients seeking medical treatment from Dr. John Seibert, the leading expert in PRS reconstruction procedures?
91) January 4, 2016 - 12:22
Name: Amy
Location: Bayonne, NJ
E-mail:
Comments:
I have been experiencing physical symptoms on the left side of my face that are similar to those associated with Parry Romberg Syndrome. It started when I was about 18. I am now 28 and I feel my symptoms have gotten significantly worse. I was wondering if anyone one knows of any doctors in New Jersey who specialize in parry romberg syndrome and can help diagnose my condition? I cannot seem to find any doctors who are familiar with parry romberg syndrome in NJ.
90) November 24, 2015 - 06:01
Name: Phillip
Location: california
E-mail:
Comments:
spouse has PRS
89) June 9, 2014 - 21:28
Name: Kathy
Location: Sacramento, CA
E-mail:
Comments:
I am going to be very brief instead of telling this horrible story because right now who knows there may be repercussions. I am looking for a retired Postal Worker with P.R. or a similar HFM problem who was misdiagnosed as TMJ, had orthognastic surgery but not the follow up soft tissue surgery. I truly feel your pain and frustration, please e-mail me back, I am desperately looking for you, we both started out in another system, and now, are both in another. If you read this you will remember me.... I am not willing to name the institutions, but I believer there may be more than afew of us. May God watch over us all.
88) February 10, 2014 - 13:25
Name: Lisa
Location: Belmar, NJ
E-mail:
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:
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:
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:
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.
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