Head Pain

Hi- I have been experiencing almost constant head pain in the forehead region. I also have body pains which have been diagnosed as Fibromyagia Syndrome. I had surgery to remove a Rathke's Cleft Cyst in Jan 2006. I became Panhypopit after this. On all Pituitary hormones: rGH, Cortisol, Thyroid, DDAVP, and HRT. RE the head pain, I think that I may have Trigeminal Nerve damage that is causing this pain, as it started happening after my surgery. What type of doctor do I see? I live in a rural area in Hawaii and there are no neurologists or pain specialists here. I will travel anywhere to get a proper assessment and treatment plan. How do I research and find the right type of doctor given my history? I have already brought this issue up with my neuroendocrinologist who referred me to a headache doctor who had no real plan other than Topamax (which caused me to experience vision problems) and all of the usual Migraine lifestyle stuff that I've tried and does not do anything. I've also been working with a Rheumatologist and we have tried FIVE different medications, of which none provided relief. The only thing working, at the moment, is an opiate which provides some relief, but not enough. Thanks

[russtoo]

Hi;

   I had thought trigeminal nerve pain caused painful, electric shock type feelings to the side of the face? I think available Tx may be called MVP. You can Google that to see. MVPs are not guaranteed to be lasting relief to my knowledge.
   Neurology or possibly a neurosurgeon could examine you at a facility in California; EG, Stanford.
   I've read if truly trigeminal, that's about the worst pain!
   A nerve block may be considered by Drs if meds don't control the pain.
   Best wishes in this!

   Russ

[horselip]

Hi Russ-
Thanks. I've been looking into this a bit. And yes it is the worst pain that you can imagine! The Trigeminal nerve has several branches. There is one branch that passes through the area where I may have some damage from my Pituitary stuff. But no, I am not having pain to the side of the face or features of pain from the other branches of the Trigiminal Nerve. I will look into MVP's. I already go to Stanford for my Pituitary care and go again in September for my three month follow up. I've brought this up already with my neuroendo and he referred me to the migraine doc. That ended up not being the right way to look at it, but I would not have known without trying. The neurologists on the Pituitary team do surgeries and don't seem to deal with this type of stuff. I thought that all neurologists were versed with this type of stuff but I think not. I will contact Stanford and see if I can get help to try and get to the right type of neurologist to assess me.

Thanks for taking time to respond, I appreciate it- Is there any one else out there who has the same problem as me? If so, does it look like I am on the right path here?

horselip

[horselip]

Hi Just got back from Stanford. I was seen at the pain clinic and felt that they did a very good assessment. They have some theories that makes sense and now on to more testing! Right now the #1 theory is that I may have a small CSF leak that is a culprit in this. So I am to have an indium scan. They are looking at the Trigeminal nerve and other pain syndromes. SO-things seems to be progressing.
Barb

[horselip]

A related discussion, CSF leak surgery did help headaches was started.