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skullzmarie
@skullzmarie

Posts: 1
Joined: Apr 27, 2017

MVD surgery for Hemifacial Spasms

Posted by @skullzmarie, Apr 27, 2017

I just recently had microvascular decompression (MVD) for hemifacial spasms. Tomorrow will be 1 week post-op. I have been told to expect nausea and dizziness because of the part of the brain where the surgery is performed. Surgery went well with no complications. I’m struggling with continued nausea and vomiting when I eat. Yesterday, I was diagnosed with a UTI after having a yoyoing fever, cold chills, hot sweats, and tremors (we believe the tremors are stress induced from surgery). I had a complete work up and was given nausea meds and antibiotics. I had nausea but was able to hold food down yesterday for the first time. The nausea meds made me sick last night. Today, I have taken my pain medication only once. But I am concerned about the vomiting. I plan on speaking with the neurosurgeon tomorrow about the continued vomiting. Today, I have noticed a change in taste. My meds taste normal than wierd. My lunch tasted normal at first then it begain to taste off. This evening, I noticed I will occasionally taste the saline solution that was used to flush my IV. I’m wondering what others have experienced. How long does the nausea and vomiting last for most people? What side effects have you had? I’m so frustsrated and ready to complete this recovery. Please, please, share your experience with me. I’m starting to wonder if the surgery was really worth it…the way that I’m feeling. Thank you for your time.

REPLY

Hi Skillzmarie, welcome to Connect,
I’m tagging @bethf5 @lamerex4 @zane @ianbrant and @omlee who have all talked about microvascular decompression (MVD) here on Connect. I hope they will join this discussion to share their experiences.

Marie, did you talk with your neurosurgeon today? What did s/he have to say about the continued vomiting and recovery process?

My spouse had that surgery in 2009. I know that you have been going through a living hell that never seems to end! I hope that you’re starting to feel better.
Following my husband’s surgery, I remember that he was very weak and had a headache that lasted for days. He had scar pain that lasted for years, but that’s an unusual side effect, and a different neurosurgeon was eventually able to prescribe an ointment that took care of it permanently. Was the surgery worth it? I would say “Yes.” His hemi-facial spasm was extremely severe and painful. His face would pull up to a severe angle. He had Trigeminal Neuralgia and facial tics. He had lost his sense of taste and had numbness in his nose, mouth and throat. He had to close his business and retire due to his condition, and go on disability. The MVD totally cured the TN and facial tics. He sometimes has spasms, but not to the degree before surgery. He regained feeling in his nose and throat, and sense of taste. Sometimes his mouth still numbs and at those times, he may bite the inside of his mouth enough to cause bleeding. He did regain a good quality of life and I hope that you will, too.

My son just had surgery for hemi facial spasms. I am wondering if anyone else experienced spasms after surgery???

Hello @jnetten. Welcome to Mayo Clinic Connect! Great to have you here. Sorry to hear your son had to endure such surgery. How long has it been since he's had his surgery?

@jamienolson

Hello @jnetten. Welcome to Mayo Clinic Connect! Great to have you here. Sorry to hear your son had to endure such surgery. How long has it been since he's had his surgery?

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April 6th

MVD scheduled for June 27th – two nerves have compression at Mayo Jacksonville. So looking forward to the end of horrific pain and spasms. Would appreciate any insight into what to expect during recovery. Thanks.

Last May, I wrote about my husband's 2009 MVD surgery. Unfortunately, the hemifacial spasm resumed late last year. The TN didn't, thank God. After researching, I was sorry to see that others have had the return spasms return at about the 10 year mark, post MVD He has gotten some relief from Botox injections by a very capable neurologist who specializes in Movement Disorders. She also prescribed Trileptal twice daily, and he's using an oral tincture of medical marijuana, (which is legal in our state), as well as a vape form. My heart goes out to anyone who is suffering from the debilitating condition.

Have any of you had hearing loss? Was it permanent? If not permanent, how long until hearing returned and what percentage of hearing returned?

I am 6 weeks, post-op. At first I was almost pain free, definitely not a intense pain. Saw the neurosurgeon, last week. I have pain again, but now it's on the other side. It's so intense, th as t my family can te, that I have pain. Still, have numbness in my head, some dizziness, at times some problem with my gait .

I

Several of you have recently had microvascular decompression (MVD) for hemifacial spasms. It would be great to hear how you are doing. I'm sure others would benefit from your experiences.

@annamh – how are your pain, numbness and other symptoms doing that you were experiencing 6 weeks post-op?

@esumner – I'm guessing you may have experienced some hearing loss after microvascular decompression (MVD)? If so, will you share a bit more about that?

@marti2018 – how did your MVD go?

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?

@michelles123

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?

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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

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

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?

Jump to this post

@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

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