Fibrous dysplasia sphenoid bone-post craniotomy pain

[Shawnakay2005]

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?  I am able to produce much more detailed info and MRI/CT scans take before my surgery, I don't have copies of any post surgery scans.
Thanks for your time!
Shawna

[jltalley216]

My monostotic fibrous dysplasia to the shenoid bone in left frontal lobe was first confirmed by a neurosurgeon after biopsies through the nose, and after 2 years of the most horrible pain one could possibly imagine - specifically to the left cranial area, affecting vision in left eye and constant problems with left ear, both  in hearing and in - at times - bleeding. That was 1993, and I was 43 years of age, and very active in my law enforcement career. The pain continued to worsen, and after my family physician tried several pain medications, i.e., percodan, oxycontine, demerol, and numerous others. Absolutely none helped with the pain. In 1994 I had craniotomy neaurosurgery, although the fibrous dysplasia was known to be inoperable. I almost bled out twice, with a total of 12-14 hours in surgery. As my neurosurgeon couldn't access the FDysplasia, she decompressed the sensory nerve, forever causing total loss of any feeling to the left side of my face. Less than a week after the surgery, the headaches returned, and the pain then extended into my neck and upper spinal area. Ultimately, the only medication that has even remotely helped in relieving some of the pain was Fiorinal and Fioricet with codeine. That was almost 20 years ago, and that's how long I've been on that medication, being prescribed - at one point - 200 capsules per week of the Fiorinal/Fioricet with codeine. The Fiorinal w/codeine caused an abscessed ulcer 4 years ago and was rushed to emergency surgery. The change was then made to Fioricet with codeine, now at 100 capsules per week (14 per day), in addition to one tablet of ameproxade a day (acid reducer) for the rest of my life. The entire process brought on severe/critical stage of osteoporis and a high risk status in having a horrific immune system. What a nightmare, with MRI scans every 6 months. The situation ended my career in law enforcement and I was placed on lifetime Social Security permanent disability. If only there were even the most remote medical procedure to possibilty to end this pain, I'd do it in a heartbeat. I've gone from such enjoyment of the outdoors, traveling, earning a living on my own, cooking...so many other aspects. To this day, the pain will get so horrific at times, I simply fall to the floor, to my knees, and pound my head to the floor. Seizures, although not major seizures, have also occurred many times. I simply don't understand why, in this age of scientific technology, something - anything - can't help. I totally understand how these others who post comments feel. My marriage has been ruined by this, and my family physician always tells me he hasn't heard of anything new that might help me.....so just on and on with the pain medicine. As a Vietnam vet, and the tragedy of my 12-year-old son being killed in an accident, I will forever do my best to stay strong....Thank you for your time...jerry talley (also "***@**** or email at "***@****). The best to all with such pain...:).

[clmoyer03]

I'm so sorry to hear what u went thru. My husband was diagnosed with the right frontel fd. Did biospy of course can't do surgery. He has experienced pain in head losing right side balance and his vision he seeing doubles..I'm seeing alot of changes in him. Used to be so happy and outgoing now he's so mad mean and sits all day. We have tried everything to relieve his pain. He even lost his memories if two years he cldnt remember what he did or we did in past two years. It's so hard dealing with his pain and struggling his new self that he hates. I miss him alot but still stay with him no matter what. I just hope he doesn't get worse. I'm praying for u.

[lolita260]

I can´t begin to imagine what loss of quality life yóu and your loved ones have had to endure. FD is a bone disorder that can´t be amputed and removed permanently. I was diagnosed with FD in 2009 and on the cranial area. My hair covers it so esthetically it can´t be seen. In the last two years I have severly lost my right hearing and my left ear mildly. Neurosergeon wants to have skull cut in have and replace it with a psthatic bone. The price, definetly I would come out with hearing and seeing on my right side. So, my husband and I decided not to go throught it. It don´t have any effects, only that I have been Epileptic at the age of 15, 1975. Ever since, I have been treating it as such, until new neurologist didn´t think I was Epilepticv due to the long periods btw one event to another. Sure enough, the skull has added preassure on to my brain. I still treat it as Epilepsy and not going through the knife.  Keep simple until I cant no more. In the meeantime, I would love to know how you´re treatments are coming. Keep posted. L. denBleyker