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Having vision problem. Ct scan showed Gramifacial Fibrous Dysplasia. Medical treatment?

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Neurologist, Surgical
Practicing since : 2002
Answered : 173 Questions
My son viz XXXXXXX XXXXXXX , aged about 13 years has some vision problem to his left eye due to which we took CT Scan and MRI. The CT scan report conclude "patient is a C/O Gramifacial Fibrous Dysplasia. diffuse Widening of the diplopic space & ground glass appearance involving facial bones with diffuse expansion of bilateral sphenoid, ethmoidal, & maxillary bones, pterygoid and medial portion of body of left hemi mandible, right mastoid & squamous adjacent temporal bone with obliteration of right maxillary, left ethmoidal & both sphenoid sinuses XXXXXXX
The MRI report conclude "Features suggestive of fibrouse dysplasia involving facial and frontal bones as described in the text - Craniofacial form, with severe narrowing and compression of optic nerves XXXXXXX

After the reports it was diagnised that left ey optic nerve has been compressed very much effecting left eye but right right is not affected though there is compression. Therefore we have decided earlier to get the left optic nerve compression removed by surgical intervention and accordingly in November 2012 my son was operated for left optic nerve decompression at Lilavati Hospital, Mumbai by Dr XXXXXXX Goel, Neuro surgeon and Head of department of KEM Hospital, Mumbai. Now my sone has recovered from surgery but the the left eye vision is yet not recovered substantially.
in the above context i humbly request your expert and specialised advise on the following queries for which i shall be very much thankful to you:
(a) what steps and actions i have to take for attaining full vision of left eye for which dempression surgery was done in November 2012.
(b) since my son is only 13 years of age and growing age, though decompression of left optic nerve was done, is there any chances of again compression of left optic nerve and if so what precautions and safeguards we shall take to ensure there is no regrowth of bone compressing left optic nerve.
(c) though the right eye vision is not affecting, there seems to be compression for right optic nerve. Is it advisable to decompress the right optic nerve also and how to go about for the same.
(d) since there are disproportionate growth of frontal bones and facial bones, what steps, safeguards and surgical interventions we shall take.
(e) My son is also not able to smell the food indicating that his nosal bones also have increased disproportionately compressing the nerves. What stpes i shall take for removing this problem.
(f) since there seems to be disproportionate growth of one bone in chest bones, what steps i shall take.

(g) Is there no mediacal treatment thereby by use of prescribed medicines all the disproportionate growth of bones of facial, frontal, chest/ribs, etc., can be decompressed without surgical intervention.
(h) what continuous and at periodic time i shall take the tests of CT scan, MRI etc.,
(i) since sugical intervention to decompress the left optic nerve was done through left temple, there is little swallow area where this surgery was done, what steps i shall take to make the same to mix up with normally without signs of hallow etc.,

Kindly inform if any documents are required to be sent by me and if not required kindly help me to overcome my trouble to my son.
Posted Thu, 28 Mar 2013 in Stroke
Answered by Dr. Vineet Saggar 1 hour later
Dear Friend,
I really appreciate you keen interest and knowledge of this disease process. I am sure you understand that it is difficult disease to treat. Your sons our doctor can monitor his condition with follow-up X-rays and MRI orbit to see degree of optic nerve compression every six months. In addition, you need to get VEPs done that is visually evoked potential, it is test to see degree of optic nerve compression and progression even before patient can perceive it or MRI or CT can detect them. If there is no progression, you do not need treatment.


Medications called bisphosphonates, including pamidronate (Aredia) and alendronate (Fosamax), are used to inhibit bone breakdown, preserve bone mass and even increase bone density in your spine and hip, reducing the risk of fractures. Doctors use these medications primarily for adults to treat osteoporosis and increase bone density, but bisphosphonates may also reduce bone pain associated with fibrous dysplasia and, in some cases, improve bone formation.

Little is known about the use of bisphosphonates for children and adolescents, but some studies indicate they may help relieve pain in children and adolescents with severe fibrous dysplasia.

Oral bisphosphonates are generally well tolerated, but may irritate your gastrointestinal tract. If you can't tolerate oral bisphosphonates or if your doctor recommends a drug that's not available in oral form, you may receive bisphosphonates through a vein (intravenously). You can't take bisphosphonates if you have serious kidney disease or low blood-calcium levels.

Now as regards to loss of smell it is not likely to improve other risk in such patients is hearing loss.

Vision already lost in one eye may or may not improve but surgery is done to prevent further vision loss

As regards to hollowness in temple area it can be camouflaged with change of hairstyles but if significant may require cranioplasty.
As regards to facial bones, surgical treatment is cosmetic and therapeutic if sinuses are blocked by dysplasias. Asymptomatic cases just require follow up.
As regards to treatment with bisphosphonates you may need to visit endocrinologist.
Dr Vineet
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