The questions below are examples of the many enquiries made by patients. If you can’t find what you are looking for we will endeavour to assist with any questions you may have. Get in touch with us via our Contact Us page if you have a question or are struggling with any aspect of the condition.
My mother and I have had jaw cysts. Should my children be x-rayed?
Yes. The importance of jaw cysts is to have them treated when small so it would be sensible to have x-rays in this case. … Continue reading →
Why do jaw cysts grow so quickly?
Jaw cysts can grow to a tremendous size within a few years. This is a reuslt of the secretion of fluid into the sac. … Continue reading →
How often should screening be done for jaw cysts?
Normally, once annually unless advised otherwise by the oral consultant involved. … Continue reading →
I’m worried my children may inherit Gorlin Syndrome. What should I do?
There is a 50:50 chance of children inheriting Gorlin Syndrome. It is suggested that an appointment is obtained with a Geneticist who will be in a position to confirm the condition in family members. The family GP can arrange the appointment. … Continue reading →
Is radiotherapy treatment recommended for Gorlin Syndrome?
In some patients with Gorlin Syndrome radiotherapy may lead to rapid development of new basal cell carcinomas and therefore should be used under special / exceptional circumstances. … Continue reading →
What is Moh’s Surgery?
The procedure is a form of surgical excision that has been modified with mapping the margins of the tissue specimen to determine whether tumour remains. This technique spares normal tissue because of the microscopic control involved. The pain, post-operative result, … Continue reading →
What are bifid ribs and are they a symptom of the syndrome?
Yes they are. Bifid ribs are ribs that are split in two. They cause no problems and need no attention. … Continue reading →
My thumbs are very short from the middle joint to the end. Is this part of the syndrome?
It does appear that a large number of people with Gorlin Syndrome have this problem. It is nothing to worry about and will cause no problems. … Continue reading →
Is hammer toe related to Gorlin Syndrome?
Yes. The second toe tends to be longer than the big toe resulting in the second toe getting pushed back. … Continue reading →
Do Basal Cell Carcinomas ever stop in Gorlin Syndrome?
No hard and fast rule. In some people they do slow down with age, in others there is little difference. … Continue reading →
Do I need to stay out of the sun?
In Gorlin Syndrome patients are at a greater risk of developing BCCs, it is therefore recommended that people take care in the sun. It is advisable to use a sun block or high factor sun screen. It is also recommended … Continue reading →
Do ovarian fibromas affect fertility?
There is no evidence to suggest that fibromas or cysts affect fertility.
Does the size of the head mean problems during childbirth?
In pregnancy and childbirth 72% – 80% of women needed forceps or caesarean section during childbirth.
I would like children but I have Gorlin Syndrome. What should I do?
There is a 50% risk that a child will inherit the condition. It is important to point out that you do have choices. Speak to your Doctor or Geneticist, they will be in a position to offer information and advice … Continue reading →
Can I donate blood?
Yes. Once blood has been donated it goes through a process which ensures it is safe for transfusion.
Should I be x-rayed for jaw cysts?
Jaw cysts should be treated when small. The only sure way of detecting a jaw cyst is by x-ray. It is therefore sensible for regular x-rays at intervals recommended by your geneticist or oral consultant and this will be dependent … Continue reading →
Is there a rule on the frequency of ultrasound scans for fibromas/cysts?
There is at present no protocol for regular screening for ovarian fibromas/cysts. If the patient requested screening it would be advised that healthcare professionals with experience of Gorlin Syndrome did it.
How common are ovarian fibromas in the syndrome?
Studies show that about 25% of women have fibromas. They cause no problems unless they are large. There is no evidence that they affect fertility.
If a fibroma is found does it normally have to be removed?
Only if it is causing problems, i.e. sometimes when the ovary twists round the pedicle, it can stangulate the blood supply. Usually the fibroma, not the ovary is removed. Sometimes cysts develop on the ovaries during the menstrual cycle. These … Continue reading →
What are ovarian fibromas?
They are solid benign lumps on the ovary which often become calcified. 25% – 30% of Gorlin women are affected by ovarian fibroma and/or calcification. They cause no problems unless they are large.
Does stress increases the chance of developing further BCCs?
No hard and fast rule. In some people they do slow down with age, in others there is little difference.