Post-Treatment > Post-Treatment

Trigeminal Neuralgia

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jbodington:
Trigeminal neuralgia (TN) has been mentioned in various categories and, for those who do have it, the pain is intense and this topic justifies its own category.

I had an acoustic neuroma removed in 1986.  11 years later I had the first signs of TN.  The cause was scaring inside due to the 1986 surgery and various things getting pulled around.  After 6 years of Tegretol, Carbatrol, Trileptal, Neurontin, Topamax, Baclofen, Chiropractic, Acupuncture and wishful thinking  - I had another surgery.  This surgery is called microvascular decompression (MVD), it worked, I have been pain and drug free for 3 years.

To manage the drugs, I saw Dr. Graff-Radford at Cedars Saini's Pain Clinic in LA.  The MVD was done by Dr. Shahinian, also a Cedars.  I was very impressed by both, chose them after considering many others, and I would go back to each.

jbodington:
There have been several requests for more information on the surgery.

First, the pain is usually casued by a blood vessel touching and irritating the trigeminal nerve.  The pain is supposed to be worse than kidney stones (yes, I had those too) and child birth (I do not know about that 'cause I'm a guy).  An MVD involves another hole in your head.  The surgeon goes in, separates the blood vessel from the nerve, pads the space between the two, glues things in place and then closes up.  Dr. Shahinian did mine with an endoscope, the new hole is the size of a dime, post-op was not a picnic but life got very good fast.  No pain, no drugs.

An MVD on an acoustic neuroma patient can be a challenge becasue you may not be "fresh".  You may have scar tissue and altered anatomy inside your head that make a sugeon's job more difficult.  Go to a pro.  I interviewed four neurosurgeons before deciding on Dr. Shahinian.

Battyp:
Interesting info, thanks for sharing!
If you've had kidney stones you have experienced childbirth I worked on the surgical floor and saw the pain the guys went through with that and all the women said now you know how your wife felt having your kids  LOL

Sue:
This one scares me to death. Every little twitch and ping and odd feeling I get on my AN side, I pray isn't the start of Trigeminal Neuralgia.

Sue in Vancouver

Captain Deb:
Guess I'll have to google trigeminal neuralgia.  I've been a post-op headache sufferer for almost 4 years and some of my headaches are unbelievable.  Always on the AN side and around the surgical site.  I've had some relief with injectable Imitrex, but I have a headache of some sort daily, and a "brainwreck" about once a week in spite of trigger point injections and 1800 mg of Neurontin daily! I'd love to hear more about your symptoms, j-bod.
Capt Deb 8)

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