trigeminal neuralgia? or something else....?

[tiredofpain720]

I was diagnosed with trigeminal neuralgia 8/10.had a MVD performed 1/11. after surgery my neuro told me that a vein had fully bonded to the nerve as well as a thckening of my archanoid membrane which had wrapped around the nerve as well. He killed the nerve and removed what membrane he could. ever since surgery most of the sharp electrical pains were gone and i woud occasiony geta little zing or ping in my face along the trigeminal pathway. about a month ago i had a full return of symptoms thought not electrical in feeling.and now they are bilateral symptoms. i went back to my suregon, pain doc, and neuro and none could give me an answer. my surgeon order a mri with contrast as wel as a cervical mri. it showed enhanncement around the surgical site which my neuro seemed concerned about giving the length of time since surgery. but he didnt elaborate on it at all. also the mri showed a disc compression and bulge in c5-c6. but suregon didnt seem concerned though i do have quite a bit of back pain.also in all of my mri's since the first diagnoses in 8/11 there have been white matter lesions though this last one states they are not in the typical form of multiple sclerosis. i am quite concerned about all of this for various reasons and whats worse is i dont understand why any of this is happening. i try to get explanations from my docs but they seem hestiant. pls help make sense of this for me if you can. should i be concerned about the enhancement of the area,or about the bulging disc? what questions should i ask my docs? any help is greatly appreciated.

[nancy99n]

The doctor that helped me was a Facial Pain specialist at a large teaching hospital.  These docs only deal with Facial Pain day in and day out.

It is unfortunate that this disease - in all its varieties - is considered "rare" and so many docs (even neurologists) don't have a lot of experience treating patients like us.

Let us know what you find out from your new neurologist.  Your story could help another member of the community.

Here's hoping you find your pain solution!!

[tiredofpain720]

after reading the dr response your's is better. which unfortunately is what i find in these cases. since most docs havent treated or worked with TN they have no idea unless they are specialized in TN. i find that the most knowledgeable is the actual patients.

[tiredofpain720]

one responded. thank you for checkin into it for me.

[nancy99n]

The doctors are volunteers, so we don't know exactly when they'll respond.  One estimate is usually a 10 day turnaround.

[nancy99n]

I'm new to this "community leader" thing -- so I don't know all the protocols yet.  I WILL ask and find out about the expert forum for you.

Good luck with nuerologist #4 -- I hope he can give you some pain relief!

Take care and keep posting!  This community really understands dealing with pain and dealing with facial pain diseases!

All the best,
Nancy

[tiredofpain720]

thank you so much for your response. i actually ended up in the er yet again for the pain this past saturday. monday got a copy of all er tests and a copy of my surgery notes. andtoday am seeing #4 neurologist. hope he finds something useful. i shall let you know if i had find anything out. again thanks so much. do the docs on the expert form ever respond. posted there 4 days ago with no response.

[nancy99n]

My only advice would be to try and get a second, third, or fourth opinion.  Gather all your test results -- the MRIs -- if you can get the disc or films, the MRI reports, etc.  and also all of your doctor records.

When I was diagnosed with TN I had to go thru 5 doctors before I found #6 who actually helped me out.

As for the white matter lesions on the MRI -- from what I've researched, there are many different things that can cause white matter lesions other than MS.

Unfortunately, both TN and MS are diagnoses of ruling everything else out.  As someone who has been diagnosed with both TN and MS, I always wonder...

Hopefully someone in the community here can also give suggestions.  

You may also want to post your questions on the Neurology community.

Please let us know how you're doing and take care!
Nancy