MVD surgery for Hemifacial Spasms

Hello - I was just diagnosed yesterday. I was so happy to find this group.
I noticed my symptoms starting March 2018 and the twitching just keeps getting worse. I cannot get in to see a movement specialist until June 2019. Each Neurologist that I saw said it wasn’t their expertise. (This has been so frustrating).
Does anyone know what causes this?

Hi, @michelles123, and welcome to Mayo Clinic Connect. Glad that you found this group, too.

Since you have this new diagnosis, I thought you might be interested in some Mayo Clinic information on hemifacial spasm:

- General information on hemifacial spasm symptoms, causes, treatment https://www.mayoclinic.org/diseases-conditions/hemifacial-spasm/symptoms-causes/syc-20373296

- A YouTube video with Michael Link, M.D., Mayo Clinic neurosurgeon, talking about hemifacial spasm https://www.youtube.com/watch?v=R6DMwt2F-RM

I'd also like to introduce you to others who have talked about hemifacial spasm like @skullzmarie @jnetten @marti2018 @gigi76. Hoping they will have some input for you as a newly diagnosed patient. I'd also like you to meet @hopeful33250 and @johnbishop, who may have some thoughts for you.

Do you know, @michelles123, if you might have an opportunity to be seen earlier if there is a cancellation? Or, are there any other movement disorder specialists in your region who might be able to see you sooner?

@michelles123
I'd like to add my welcome to Lisa's, and say how glad I am that you found Mayo Connect. I am pleased that you posted about this rare disorder.

I also came to Connect because of a rare disorder, a rare form of cancer, neuroendocrine tumors (NETs). I was approaching my third surgery when I found Connect and was so pleased to find others who shared this diagnosis with me. Their understanding helped me through this stressful time and I still appreciate all of the support that I receive from this wonderful community.

I read the links and also listened to the video that Lisa provided and I also learned a lot about this disorder. As you can see, from the written information as well as the video, the cause is often unknown.

I am glad to hear that you are slated to see a movement disorder specialist. It is unfortunate that you have a long wait for an appointment. You do not mention what type of facility you will be seeing, however, as Dr. Link mentioned in his video a multidisciplinary facility, like Mayo or a university medical school, would probably be your best choice for any type of rare disorder.

I live in Michigan and I see several doctors at University of Michigan. The situation is similar there, you wait for a long time for an appointment with a specialist. However, most facilities will either "wait list" you or tell you to call back and check on possible cancellations. They will even recommend that you call daily if you wish. So I would recommend that you check in with them periodically and see about cancellations for an earlier appointment time.

If you care to share more about this diagnosis, have you had any MRI done of the head/neck area or any nerve conduction tests (EMG)? Have any medications been tried that Dr. Link mentioned in his video?

@michelles123
I'd like to add my welcome to Lisa's and also welcome you to Connect. I'm really happy to see that you are reaching out to learn as much as you can about your rare disorder. I did find an interesting article in the Journal of Neurosurgery that might be helpful in learning more.

An investigation into quality of life improvement in patients undergoing microvascular decompression for hemifacial spasm
-- https://thejns.org/view/journals/j-neurosurg/128/1/article-p193.xml

John

I have had HS for 25 years Botox works great but you have to inject every 5to 6 months. I am going though acupuncture treatment s now and they are definitely helping me.

Hello @michelles123

As it has been a while since you first posted, I was just thinking about you and wondering if you found a doctor who can treat your problem.
If you are comfortable doing so, will you post an update?

Hello - thanks for sharing. I have my initial consult in February at Froedtert. I’m hoping for other options than surgery.

@michelles123
I hope that consult goes well!

John - Thank you for the article.
Michelle

@michelles123 I just googled "Froedert" and see that it is a neurological hospital in Milwaukee. I had not heard of it before. Is that where you are going" How did you hear about it?