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Old 04-20-2011, 10:50 PM   #1
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Join Date: Oct 2008
Location: Missoula, MT
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Shawnakay2005 HB User
Fibrous Dysplasia Sphenoid bone pain

Hello...
A little back ground. In 2006 I was diagnosed with fibrous dysplasia of the sphenoid bone. It was found by accident, and at first I didn't have any symptoms. A year later I started to have head aches, and I was losing my peripheral vision in both eyes. My Neurosurgeon felt that surgery was need to relieve my headaches and decompress my optic nerves. This was done 12-10-07 by craniotomy (going through my skull) and an ENT Dr going up my nose to access the lesion. After the surgery I was symptom free and regained my peripheral vision. Less than a year later (10-16-08) I was again having similar symptoms, but my headaches were worse and I was now having facial pain. The lesion had grown more rapidly than expected and was once again pushing on my optic nerve (right eye only this time) and now pushing on the trigeminal nerve in my face. On 2-9-09 I once again had surgery to relieve my symptoms. This time they made the incision where the gum meets the inside of your lip and decompressed the nerves. Once again I was relieved of my symptoms and regained my vision. In June 2010 I once again started having head aches, more like it felt like my skull was cracking. That is how i describe my Fibrous dysplasia head aches. I was pregnant so we couldn't start doing CT's and MRI's until after my daughter was born mid August. In mid September we did my tests. I again was told the lesion had grown. Not very much this time but again pushing on my optic nerve (right eye only again). So 2-6-2011 I again had to have surgery, a craniotomy again this time. Post surgery my vision is back and better. The surgeon said they "really decompressed" the lesion. He said if I have to have surgery again he expects many years, at least ten.

MY QUESTION- I am now/still having migraines. Similar, but different to the ones I get when the lesion has grown. I am a little over two months post op. The pain is located right side only (the side the lesion bothers most) around the eye. It feels like the bone around my eye, and my forehead are cracking, sometimes if it feels like my eye hurts. Also having pain deep behind my eye. I just saw my ophthalmologist and he said my optic nerves are clear, and all post op CT scans and MRI's are good. I have been told it could be healing pain and may go away. I have had a continuous "head ache" for nine days now. I do have an apt with my neurologist in a couple weeks, but I am wondering if anyone has any imput? Or if anyone has experienced anything similar after surgery?
Thanks for your time!
Shawna

 
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Old 07-04-2011, 01:26 PM   #2
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Join Date: Jul 2011
Location: Toronto, ON, Canada
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Re: Fibrous Dysplasia Sphenoid bone pain

I have fibrous dysplasia in my maxilla bone on the right side and in my sinuses, extending into the left side of my face. The description of pain that you give is very similar to the pain I feel in my skull sometimes, feeling like your head is cracking. I was diagnosed when I was 5 or 6, but I havn't had any surgery, and hopefully won't need it in the future. The symptoms I'm having are calling that into question at the moment, and I am waiting for my first CT appt since I was 17 or 18 (I'm 25 as of a couple days ago). Because they told me I shouldn't have problems after puberty, when I was 18 I convinced myself that I don't need any more CT scans, and stopped following up (I've had close to 2 dozen of them as a child). I pretty much bought into the whole idea of it stopping at puberty, because I lucked out and did not suffer severe cosmetic deformities. I wish doctors didn't get my hopes up, downplaying the possible outcomes.

Lately things have been feeling worse, and I've been getting sharp pain behind my eyes, in both eyes but not always at the same time. I also get a pain in the opposite side of my head from the tumour in the temple region, and the shape of my head on the opposite side feels somewhat strange, like it is tapered in exactly at the spot where it hurts, and on the side with the tumour, the same part of the skull is of course enlarged. Could it be that the tumour has affected the shape of my skull in other regions because of the enlarged bones displacing other bones? I've also noticed the space at the top of the nose, under the forehead, and between the eyes has been sinking inward since I was 15 or so, and hasn't stopped. I wish I had gotten CT scans these past few years. I had neglected the possibility of a severe outcome because such a scenario was often downplayed by doctors when I was a kid, so now I don't know whether or not to feel shocked about these symptoms, or how severe it really is, if I'm over-reacting or under-reacting.

I also recently read about endocrine problems associated with FD and decided to ask for a thyroid hormone test as I've always been underweight and lacking appetite, have high anxiety levels since I was a child, and it would make sense. My T3 levels turned out to be outside normal limits on the high end, and the TSH and T4 were normal.

The tumour is also covering the backs of my teeth on the right side and is starting to change the shape of the roof of my mouth, a feature which wasn't present when I was a child, confirmed so far with a dental X-ray. I also get pain directly in the tumour, though not always at the same time as the pain in the opposite side. The pain in the tumour is usually under the eye, though is sometimes in front of the right ear. The pain in each eye is different in quality as well, and it varies. Sometimes it hurts to move my eyes, sometimes I get a sharp, sustained pain behind my right eye lasting hours sometimes I get a dull pain lasting days throughout the tumour and the eye, other times my left eye will hurt and will twitch, with or without pain. Once I had a sudden pain that felt like my eye was stabbed with a needle and then felt a burning sensation for a few days in that eye. Other times I will go weeks without pain, though for the past 6 months that hasn't been the case. The eye on the side of the tumour seems to be bulging out slightly compared to the left eye, which is always slightly closed (this has been this way since I was a kid). The pupils have always been noticably different in size. Also, the muscles in my face don't move symmetrically at all. I had very little pain as a child, and mostly in the tumour region, but as an adult the frequency and severity of pain episodes has increased so now I am worried for the first time in several years about this condition. I've also had mild tinnitus in my right ear occasionally for the past year or so. I also have had deteriorating vision since I was 13, a little worse in the right eye than the left. I have my fingers crossed that I'll continue to not need surgery, but I'm also preparing myself psychologically to accept whatever happens.

 
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