MVD surgery for Hemifacial Spasms

@dazedandconfused1030 Welcome to Mayo Clinic Connect. You are having multiple complications after MVD surgery on October 30th. Your surgeon says there is nothing more he can do and you are looking to connect with others that have experienced something similar.

You will see that I have moved your question into a discussion where members have previously discussed MVD surgery. I did this so you could more quickly connect and get support. You will notice members like @jmh @michelles123 have experience with this topic and may be a good resource for you.

Below I have also linked another previous discussion on the topic.

- Want to connect with people who have Coronary Microvascular Disease (MVD) https://connect.mayoclinic.org/discussion/hi-i-have-joined-this-group-in-the-hope-of-connecting-with/

I encourage you to scroll back through the comments in both discussion to find previously shared suggestions.

I also suggest joining the Spine Health group and looking at previous discussions and posts there. I have the group linked below.

- Spine Health https://connect.mayoclinic.org/group/spine-health/

I'm wondering if you have an internal medicine provider and/or a primary care provider and if so, what they have suggested?

I had Microvascular decompression surgery for trigemina lneuralgia on my right side, I still have it on my left side. I did call my PCP on Friday as the doctor in hospital said to do when they discharged me on the 24th to follow up for a potassium recheck but she wouldn't see me. I think I need a new doctor.

Hello @dazedandconfused1030

I'm really sorry to hear about your post-surgery problems.
Yes, from what you have said a new doctor might be in order right now. It is always your right to get a second opinion and to seek another primary care doctor if you can't see your current doctor. Also, please connect with the other two discussion groups that Erika, @erikas, mentioned in her post above. As you read what others have to say in those groups feel free to post a question or post a comment on your own situation.

From what you said in your first post, it sounds like memory and double vision are the most significant problems right now. Is that correct? Have you thought about seeing an ophthalmologist in order to check out the double vision problem? That might be a good place to begin until you have an appointment with a new primary care doctor. Also, since your potassium is out of kilter, perhaps an endocrinologist would also be a good next step. I have personally found that a good endocrinologist is an excellent person to put together puzzling pieces of health problems. They can often come up with an answer in a way a more generalized physician cannot. My internist calls an endocrinologist "the internist's internist." That is quite a compliment.

I look forward to hearing how you are doing. Will you post again?

Has anyone had this surgery and how long did it take to recover.?

Hello @mindystapp and welcome to Mayo Clinic Connect. You will notice that I have moved your post into an existing discussion on surgery for hemifacial spasms to allow you to connect with members such as @triciasc @michelles123 and @lamerex4 who have all previously shared about their experiences in this discussion and who may be able to come back and give an update on their journey.

In the meantime, can you share a little more about where you are at with your hemifacial spasms?

I have one MVD for TN with facial spasms. Got complete relief but the horrible symptoms returned eight months later. I then had a second MVD and again, I achieved complete relief but I had a recurrence exactly eight months later
So I had gamma knife surgery with excellent relief and had a recurrence ten months later.
I know have a hydro morphine pain pump with catheter ending in C3 to get directly in my brain
My doctors call my TN intractable but to me the MVD was the best in achieving relief
The problem is that it did not last
Recovery after the second one was a lot easier than the first one abd I was out of the hospital in four days
I also had some electrolyte imbalance but it all gets better
If you only have the facial spasms no TN I would think it will help
My facial spasms were severe. I could not put two words together. Had to use a dry erase pad to comunícate
The surgery lasts four hours but there is no pain in the incision
I had my surgery at St Luke’s hospital in Houston abd my sweet great neurosurgeon was Dr Viishwanatan
The very best
It was not his fault that I had
Recurrence. It’s the severity of my disease
Good luck to you!

I see there has been no more discussions on this rate disorder called Hemifacial spasms since Sept 2021. Is there anyone out there who’s had Botox complications for hemifacial spasms? My neurologist said the small amounts injected over the last year every 4 months, seem to be spreading and causing stiffness on one side of my face. The Botox doesn’t relieve the spasms completely but does give some relief. Anyone have my problem?

Hi All,

I’m new to the group and noticed that the last post was a while ago—I hope the group is still active.

I have been experiencing hemifacial spasms since 2022. In 2024, I tried Botox injections every three months for three sessions, but I decided to stop because, while they provided some relief, I didn’t like how they weakened my facial muscles.

On February 10, 2025, I underwent MVD surgery at Brigham and Women’s Hospital in Boston. My initial recovery went well, and the spasms disappeared for the first 2–3 days. However, I was disappointed to find that they returned, and their frequency is almost the same as before surgery.

I came across an older post from @jmh that mentioned, "Total recovery with twitches gone can actually take 6–12 months." That gives me hope, and I’m curious—has anyone else experienced a similar recovery timeline?

Looking forward to reconnecting with the group, sharing experiences, and supporting one another.

Hi Sharon and group
I believe everyone's experience is so different but let me share with you what happened. The bottom line for me .....it is a hit and miss with both the surgeries and the BOTOX. It will never go away and the blessing in it all there is no pain so I always consider myself fortunate compared to other illnesses/disorders I could have.
2016..... my right eye started to flicker so I thought it was a tired eye but got more frequent

2017-Nov 2019 .... the spasms increased in frequency and was all over my right side of my face and after an MRI in Dec.2019 I had my first surgery

Dec.2020- June 2020..... - all good, thought it was done

Sept 2020.... got another MRI as the spasms were right back and frequent - even at night

Sept.2020-June 2021....spasms were awful, effecting my eyesight,

June 2021 ..had my second surgery and the neurosurgeon said there is a 90% chance of losing my hearing because they are going closer to the nerve by the right war
He was right..... I am totally deaf on my right ear as soon as I awoke from the surgery
June 2021 - Dec.2021 - recovery was hard as I had balance issues, nausea cannot walk alone without using a stick ( to this day) Could not read or sit by a computer for very long (30 minutes)

Jan.2022 to present - spasms returned hearing is gone, still no pain. I am now getting botox every 6 weeks as we started every 3 months and that was not working. Now, it is still hit and miss with the 6 weeks Botox. Some times it helps totally and others within a few days the spasms are there
Yes my face looks concorted at times, so I just joke about it as I am with the public ( teaching) a lot and the spasms can be a distraction. So I just own it and also have a real appreciation for what people who are "different" in some way can experience.

Also one neurosurgeon I spoke with about botox said he was surprised I went for a second surgery as he said these are very dangerous,,,
There you all have ot...my story:-)

oops meant Dec,2019 - June 2020