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    Suggest treatment for trigeminal neuralgia

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Posted on Mon, 7 Aug 2017 in Brain and Spine
Question: my sister in law has trigemenal neuralgia. She had the MVD surgery but the pain is still there. She is still having tremendous pain in the area where the eye meets the nose (corner) and it is painful to swallow. She chose the MVD surgery as she was told it was a "cure". All of the pain is on the left side and she has also had problems with her left eye. Her MVD surgeon said her situation was complicated when he got in to do the surgery, that he had to do the cushions (or whatever they are called) in four places. He said he wouldn't have been able to do anymore on the backside...it would have caused a stroke. So we are wondering if that's where the problem lies, or does she have something else? She feels like it's something on her sinuses. But her MRI is clean. What other tests , suggestions, procedures, should she try? and also where is the best research being done on Trigemenal Neuralgia? It also seems that barometric pressure is having an effect on her. When storms come in, she gets worse.
doctor
Answered by Dr. Olsi Taka 2 hours later
Brief Answer:
Read below.

Detailed Answer:
I read your question carefully and I understand your concern.

I am a little puzzled by the neurosurgeon saying that the procedure needing one year to work. That is too long a time, for the overwhelming part improvement is seen immediately after surgery. There may be the rare exceptions but still after 3 months too much time has passed I wouldn't expect much improvement. Of course it may happen. While it has a high success rate of 80-90%, there is that small number of patients who undergo MVD with no success. Given that there were issues during surgery the chances of non success would be higher in this case.

As for it being related to the sinuses I do not think that is the case. Apart from a sinus issue being visible on MRI, the characteristics of pain are completely different and easy to distinguish even without MRI.
Changes in barometric pressure are common in trigeminal neuralgia, causes not completely understood, but is thought due to pressure changes on trigeminal afferents as well as dilation of blood vessels.

Regarding what procedures to try, perhaps you may have already read about them before choosing MVD, they include percutaneous procedures which are done by inserting a needle and damaging the nerve through different techniques or gamma knife surgery which uses rays to damage the nerve. As for which centers are more advanced in research and treatment of trigeminal neuralgia some suggestions would be XXXXXXX XXXXXXX in XXXXXXX or the Mayo Clinic in XXXXXXX Minnesota.

I remain at your disposal for other questions.
Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
doctor
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Follow up: Dr. Olsi Taka 5 hours later
Well, her surgeon was at Johns XXXXXXX so supposedly one of the best in the country quite frankly and she had asked him if she needed a glycerol injection procedure but he said after the MVD surgery it wasn't needed. (!?) Do you think that is also what may be required here ? a neurolysis is I guess another name for it? Or is that different from percutaneous procedure?
Her surgeon is all surgeon (not very consoling) and was sure this would work. Some of the pain is lessened but she is still in considerable pain. This is nuts! She can't even eat.
doctor
Answered by Dr. Olsi Taka 26 minutes later
Brief Answer:
Read below.

Detailed Answer:
Well XXXXXXX XXXXXXX is among the leading clinics in the US and the world, so hard to go higher than that really, as I said though there is a 10-20% of patients for which procedure doesn't help even in the hands of the best. I am not sure what you mean by the surgeon being all surgeon, does that mean a general surgeon? Trigeminal neuralgia decompression procedures are done by neurosurgeons, from what I can see on the XXXXXXX XXXXXXX website their Trigeminal Neuralgia Center team is composed only of neurosurgeons as well.

Glycerol injection procedure is one of the several percutaneous procedures, one of the most popular ones. Of course if the MVD surgery was successful it wouldn't be necessary. However since MVD seems not to work and neither do the medications (you mention her to have tried many of them) then I do not really see other alternatives, alongside with gamma knife surgery it seems to be the remaining options.

Let me know if I can further assist you.
Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
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Follow up: Dr. Olsi Taka 11 minutes later
Her doctor was their top guy in neurosurgery & TN...but he is saying it could take a year as i said before and she's very discouraged & depressed about it. When I say he is all surgeon, I meant that he didn't seem to care about the aftermath, just the initial surgery which he claimed was a success. But regardless of all that..moving forward!
Would you say there is less risk with the glycerol injection than the gamma knife...that is the impression I get from all that I have read. this is my last question...and thank you for your help, Dr.!
doctor
Answered by Dr. Olsi Taka 6 minutes later
Brief Answer:
Yes it's the procedure with less risk involved.

Detailed Answer:
Thank you for clearing the all surgeon thing up. I am still not in agreement with that one year period, some improvement should have happened, at least a partial one (allowing for better control through medication at least).

In answer to your question, yes glycerol injection is less invasive and involves less risk for the patient than other procedures.
Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
doctor
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Follow up: Dr. Olsi Taka 1 hour later
dr sorry just one more (forgive me) have you ever seen acupuncture or sacral cranial therapies have any affect on TN and also would there be any chance an MRA test would show anything useful for this condition or perhaps show something that is precluding the MVD from bring successful?
doctor
Answered by Dr. Olsi Taka 15 hours later
Brief Answer:
Read below.

Detailed Answer:
Sorry for answering a little late but due to time differences your question had come just as I had gone to sleep and I could answer only now.

I get questions about acupuncture all the time, whether for trigeminal neuralgia or for other types of pain. I have also had individual patients telling success stories with acupuncture. Trouble is that because usually those who exercise it are not part of the medical community there aren't many studies to compare its efficacy with other methods of treatment or placebo. Any treatment in medicine is recommended based on studies involving large number of patients in order to avoid coincidences. So it is hard to recommend it based on solid evidence. I can say that it is safe, so won't do any harm to try if other options are not working, but I can't provide guarantees or success chances.
The lack of evidence applies to craniosacral therapy as well, and perhaps as it's not diffused here I am afraid I haven't had any patient reporting success with it.

A control MRI does make sense to check about the technical success of the procedure and whether there is any visible indentation of a blood vessel on the nerve persisting even after the MVD.

I hope to have been of help.
Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
doctor
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Follow up: Dr. Olsi Taka 7 hours later
Hi,
I not asking another question (!!) but just clarification...did you mean an MRA or an MRI?
my understanding is that an MRA would be telling about the vascular situation...so I'm thinking that's what you meant...also that's what I had asked...
I understand there's a big time difference so no worries on that.
doctor
Answered by Dr. Olsi Taka 6 minutes later
Brief Answer:
MRA

Detailed Answer:
Hello again!

Sorry if I created some confusion, I meant precisely what you had in mind, a MRA, a MRI including angio sequences which visualize blood vessels.
Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
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