Is your medical care for Gorlin Syndr... - Gorlin Syndrome G...
Is your medical care for Gorlin Syndrome managed well or do you feel it is disjointed?
My medical care for Gorlin Syndrome is managed very well by my well established Healthcare Team. The only problems I encounter are usually due to financial budget restraints by Primary Care and Hospital Trusts, especially towards the last quarter of any financial year, although a Fundholding "pot of gold" and a Benevolent Fund are available to me.
Apart from the usual Hospital depts. of Gorlin Syndrome, for example: Dermatology, Maxillo-Facial, Opthalmology, Plastics, Womens ( I go there to use the laser !!) etc., I also find that Physiotherapy and Complimentary Therapies improve my state of well-being.
Due to my dad having the condition we have all been closely monitored and checked over the years so we have been lucky.
I attend the Christie,North West regional centre where an annual MDT review has been established which means i see my plastic surgeon,dermatologist,geneticist all at the same time.Otherwise i see them in between as necessary.This is in line with NICE recomendations and is just a brilliant service to experience.Just hope this approach can continue and be developed more broadly as the changes in the NHS pan out
we are at the beginning of life with gorlin and so far find it very disjointed feel that it is me who has to educate doctors ,optisions and most medical staff BUT WE ARE AT THE START and do expect that this will all come together as time goes on BUT feel that different medical sections are TOO happy to make check up appointments TOO far apart and what I have learnt that if a symptom arrives It arrives fast and I do feel more frequent check ups are required ie Optision had not herd of it and felt the usual 3 year check was enough and dermatologists did feel that a yearly check was enough.and with new symptoms
my local doctor has not booked test quickly Though I go appointments fast by calling specialist myself ...DR Langford from James cook hospital Middlesburgh the orthodontist I must say IS EXCELLENT !!!!!!!
But we are at the beginning and I do hope that we get {our team } together as time goes by ...
This is often the case at the start of a patients 'journey' with Gorlin Syndrome. Recommendations are that during childhood annual dental screening should commence from the age of 8 years for the detection and early treatment of jaw cysts. There is also a need for at least annual surveillance from the specialist taking responsibility for treatment of the skin. Hope this helps.
At first it was full speed ahead, was nervous and checked for everything, though I lost my Dr. who 1st recognized the signs. I was transferred to UNMC my primary care hospital, met with a doctor or 2 who seemed 2 look at me like they expected me 2 look like or b some monster and since haven't ben back. it almost ben 2 years. I recently noticed another bcns spot and plan 2 make an appointment soon after I m approved for the insurance.
We have been SO blessed! My son was diagnosed about 4 years ago when he was 8 years old, when I brought him to the local dermatoligist to have some 'skin tags' removed. Come to find out they were basil cell carsanomas. We then went to the Mayo Clinic about 275 miles away. They are WONDERFUL! We started with medical genitics & went from there. He has had more than 200 'spots' removed over the years, some skin tags, some skin cancers. He uses sunbloc EVERYDAY. Recently he had 2 jaw cysts removed. When these were discovered by our local orthodontist, I called down to the Mayo & couldn't get into see an oral surgeon for several weeks. After calling several times over a few days to see about any cancelations (& mind you the very, very helpful people making appointments have ALWAYS been SO kind! They encouraged me to call even every hour if I wanted & they would keep checking), I asked if I could come down & just sit in the lobby hoping someone would 'no show' & my son could be squeezed in. Long story short, we had an AMAZING nurse champion my son's case & a doctor stayed VERY late to see him after he was done w/his recheduled patients.
I truly do not know where we'd be without the wonderful doctors, nurses & staff at the Mayo Clinic in Rochester, MN. My son has had 9 surgeries in his short 12 years & he also loves the Mayo. We have such a feeling of security & comfort there. Even his doctor who did his jaw cyst surgery, offered to find us a doctor closer to where we live. I thanked him for the offer but told him we just feel better coming down to Rochester. It is a financial burden & there are times bills can't be paid but I'd rather have as I call it 'our Mayo debt' than credit card debt any day of the week!
My biggest advice I could give anyone is find a doctor who you can trust & if you are able to, the Mayo is the best is the world in my opinion!