Hemifacial Spasm (post op care advioce)

Brain and nerves
1

Hi,

I never knew such forum existed. I've been religiously reading many advice given from people who have experienced this same condition. If only I had found this site sooner.

Background:

Although I am lucky to have my symptoms come and go, my dad was not. For more than 6 years, I have watched my dad go from occasional twitching to practically having to live with it every second of the day. It progressed to the point where his vision started to blur and the whole left side of his face was being affected. Although we seeked out multiple physicians, no one was able to provide an answer for the cause. The only option was botox. The botox had helped his condition, but it had only lasted for a month. Soon after his symptoms had returned. I thought the reason for this symptom was due to stress since he was constantly working (12 hours a day 7 days a week).

Couple month ago we received information that this was common in Korea. After having a relative schedule a consultation and tentative surgery schedule (in case it was needed , my dad took 3 weeks off of work and left to Korea. After getting an mri and taking multiple tests, the neurologist confirmed that it was HFS. He stated that if sought out earlier, my dad would have been able to avoid surgery. However since his condition was severe, he would have to get surgery to have a 95 percent chance of recovery. Thus, the following day he received surgery.

Present: (4th day after surgery) twitching reappeared. Neurologist mentioned it would take up to 4 months to disappear.

Did not realize the severity of the surgery until 4 days ago when I was able to look up what the actual symptom and procedure was called.

For most people, after the surgery, they try to heal their body and change their lifestyle. But my dad is the type to just go back to his same stressful lifestyle. He believes 1 - 2 weeks is more than enough time to recover. And that he can't be away from work any longer. Especially since insurance does not cover the surgery.

For those who went through the surgery, is there any advice I can give him? Any post op exercise or dietary tips? And if stress was also a factor, any suggestions on how you were able to overcome it?

None of our intermediate family members are there with him... so there is no one who can restrict what he is doing. Other than the nurse or doctor. But apparently he was walking up and down the stairs to regain his strength as fast as possible. Is that safe ?

What can I possibly text him to have him reconsider the way he thinks? To have him take time off to fully recover?

How long does it usually take to recover from the surgery? To start working full time like my dad?

2

Hi yangcd

I'm so pleased you've found this forum.  Which country does your dad normally live in?  I am guessing perhaps China?  I would urge your father to be very gentle with himself in the next 3 weeks at least.  Most people find that they feel quite well in 3 weeks, almost normal in 6 weeks, but, it takes 3 months to regain full energy levels.  This is major surgery and your father needs to respect it as such - if he overdoes things then his body will let him know!  He needs to drink lots of water as he recovers and also needs to have daytime rests.  Many people find that their spasms return after a few days, but the main indicator of success is whether or not the spasms are different to pre-surgery and somewhat improved.  Research says that improvement in the first 4 months will usually result in a spasm free life within one year - he needs to be patient and to limit stress.  Gentle exercise is good but no lifting of anything heavy for many weeks.  I would say that a return to short time working in about 4-6 weeks would be OK, but definitely not long days and 7 days per week.  Weeks 2 and 3 after surgery can be quite tough with headaches so take whatever painkillers work - I found codeine good because it also helped me to sleep.  If he gets a terrible headache, fever and/or any clear liquid coming down his nose then he should see a doctor immediately because it can be a sign of cerebral spinal fluid leakage - very dangerous but also quite rare.

I hope all of this may be helpful.  I had successful surgery in the UK 3 years ago - it has changed my life for the better and I am glad I had it.  I hope the same will be true for your dad once he has recovered.  All best wishes.

3

Hi Roseann,

Thank you for the advice.

We actually live in the states.

Apparently the doctor only advised him to avoid lifting anything heavy. So my dad already made plans to start working right away...

I find it difficult to persuade him to rest when his response is that the doctor said it is fine.

But I will still relay this advice you gave me. Thank you so much!

4

Hi Yangcd, My name is Bob from New Jersey. I had 2 MVD's completed in 2002-one in Philadelphia and one at UPMC in Pittsburgh,Pa. The botched MVD in Philadelphia resulted in a worsening of my condition.UPMC's attempt 3 1/2 month's later was a resounding success.I don't recommend 2 brain surgeries in a 3 1/2 month span of time to anyone.It takes a long time to recover.Everyone recovers at a different rate,so it's difficult to generalize. ( The anesthesia really takes its toll on your entire system)They promised me 66% to 99% relief of symptoms and that's the way it is to this day. I read extensively about all of the possible post- op problems that could possibly occur ,thinking to myself that none of these problems or very few would come knocking at my front door.Suffice  it to say that I was very much mistaken.The point that I'm trying to make at this juncture is to recommend to you that you contact as many hospitals as possible that perform MVD's and request all of the information that they have regarding this procedure .Then make it your task to review all of this information,focusing on post- op timelines ,looking for common threads with respect to physical activity,return to work,exercise limits,diet and so forth. Once completed ,have a heart to heart discussion with your father, emphasizing what the recommendations are from a variety of hospitals with respect to how he should conduct himself if he wants to make a significant,lasting recovery. On the job stress,followed by fatigue,coupled with a desire to combat the onset of fatigue by using caffeinated  products is a recipe for disaster.Good luck in your effort to combat this menacing condition.

5

Hope all goes well for your dad yangcd.  You may wish to join the Facebook Hemifacial Spasm International Support Group where there are many MVD veterans from the US.  Their information files are second to none.