Author Topic: Hemifacial Spasms beginning 6 months Post CK in Jan 2022  (Read 261 times)

Dlip246

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Hemifacial Spasms beginning 6 months Post CK in Jan 2022
« on: September 14, 2022, 11:00:12 am »
Hello, I am new to the forum but have been reading the discussion posts and thank everyone for their insights. Thank you all for sharing!

In 2020 I was diagnosed with a small left side AN which we did a "watch and see."  Eventually it slowly grew to 1.4 x .83 x 6 cm (14 x 8.3 x 6 mm).  So, we decided on CK which I did in January 2022.  3 -20-minute sessions.  No immediate side effects.  But then about 3 months later started feeling a little lightheaded at times (a "1" on a scale from 1-10.).  I went to the ENT/Neuro who was my doc, and he had no idea why, so he gave me a small rx for diazepam which I barely took.  Then, with no other side effects for the next 3 months, in July (about 6-7 months post CK), I had my first left side hemifacial spasm which lasted minutes.  I went immediately to my same ENT/Neuro who did the CK and he had "no idea" what would cause that because he never heard of these symptoms so long after CK treatment.  I had a previous history of Bell's Palsy, so he treated me with Valtrex and Prednisone low dose.  I also coincidentally got Covid for the first time that same day.  Needless to say, no relief.  I was worried because he had said he never heard of such a delay in symptoms before.  I thought I had nerve damage now!

I am now 10 weeks after that first spasm.  At first, they were occurring just 1-4/day.  Now I am at 8-12 times/day.  They vary in strength and duration.  More so in the mornings when my face isn't "warmed up". They can start from a yawn or a simple laugh.  When it happens, I can feel a lot of pressure buildup in my head on the side of the AN. And tinnitus gets very loud.

I have since switched doctors. We did an MRI a few weeks ago which the Radiologist says show the tumor a little smaller and a bit blacker.  But the doctor didn't read the report but instead read the films and said he sees the tumor swollen and believes it is touching the nerve which is causing the spasms. He told me not to think outside the box as he is sure what is causing the spasms.  So now I am on my second week of Dexamethasone 2mg 3/day which hasn't seemed to help at all yet (still same number of spasms (10-12).  He wants me on it for 30 days. 

Questions for anyone who has had similar experience:  Did the steroids eventually help (side effects of no sleep aren't wonderful!)?  Anything else I can do to reduce the swelling of the tumor as a result of the radiation?  Any other Rx to suggest decreasing the frequency of the spasms?  Did your spasms eventually go away and any suggestion on a time frame? 

Thank you for reading and responding!  I will keep this post update for all to be able to review as the journey continues....
« Last Edit: September 20, 2022, 06:31:12 am by Dlip246 »
1.4 x .83 x 6 cm (14 x 8.3 x 6 mm).  watched slowly grow for 2 years then CK January 2022.  3 months post CK hazy head, 6 months post CK now having hemifacial spams same side.

robinb

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Re: Hemifacial Spasms beginning 6 months Post CK in Jan 2022
« Reply #1 on: September 18, 2022, 08:43:18 am »
Hi-

Not sure if you're the same person that also reached out to me directly...but just in case not, responding here,

I had similar experience with facial spasms post GK. They seemed to be brought on when brushing teeth, turning over, shower water hitting face, stress and cardio....my doc tried Valium, Prednisone and eventually Gabapentin, which is an anti seizure med used to treat epilepsy. That eventually helped.

My doc said they would be temporary and they were, after several months gone, never returned. And that was almost 10 years ago. You can read more details in my thread.

Hang in there,

Robin
AN Diagnosed 11-2012 right side
13mm x 7.2 mm
Gamma Knife 1/24/13
UPMC w/Dr. Lunsford
Officially a postie toastie!
See my treatment journal at: http://www.anausa.org/smf/index.php?topic=18291.0

Dlip246

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Re: Hemifacial Spasms beginning 6 months Post CK in Jan 2022
« Reply #2 on: September 18, 2022, 12:42:09 pm »
Hi Robin!  Thank you for your response, it means the world to me to hear from someone who has gone through this.  I intend on keeping my journey updated as well to help guide others.

I will be reaching out to my doctor about getting on Gabapentin.  I am at 10+ spasms a day with no relief in sight so hopefully he will be receptive, and it will help.  Right now, I am on Dexamethasone (2mg 3x/day) which doesn't seem to be helping but maybe it is? I am taking Diazepam 2 mg 3/day to take the pressure off but again, not sure if it is helping.  I am on every supplement, CBD, health food known to man hoping that can give me an edge as well.

Keep fingers crossed on me getting the rx for the Gabapentin and hoping it works....

Thank you again for your log of your journey!
1.4 x .83 x 6 cm (14 x 8.3 x 6 mm).  watched slowly grow for 2 years then CK January 2022.  3 months post CK hazy head, 6 months post CK now having hemifacial spams same side.

Dlip246

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Re: Hemifacial Spasms beginning 6 months Post CK in Jan 2022
« Reply #3 on: September 20, 2022, 06:18:56 am »
Update:  Started Gabapentin 300mg 3x/day today (still taking the Dexamethasone going on my 20th day).  Fingers crossed it lessens the spasms that come now randomly (with or without activity). 
1.4 x .83 x 6 cm (14 x 8.3 x 6 mm).  watched slowly grow for 2 years then CK January 2022.  3 months post CK hazy head, 6 months post CK now having hemifacial spams same side.

gbly

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Re: Hemifacial Spasms beginning 6 months Post CK in Jan 2022
« Reply #4 on: September 20, 2022, 12:57:29 pm »
Dlip246,
Sorry to hear you are having the spasms.  I will be curious of the results.  I did the dex but my problem was synkinesis on the radiated side.  Sucks but it is the new face :0.  basically keep positive and maybe add an aspirin into your regiment.  there is a lot of write ups on aspirin for multiple reasons.
Good luck and interested to see how it goes.
v/r GB

Dlip246

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Re: Hemifacial Spasms beginning 6 months Post CK in Jan 2022
« Reply #5 on: September 23, 2022, 07:03:00 am »
Update - today starts my 4th full day of the Gabapentin (I am still on my Dexamethasone for 21 days now, not sure it's working but I'll run the course with it).  Since I've started the Gabapentin my events went from about 10-18/day to now down to 5 and mostly all before noon! So that's great news I hope!  I am being cautious in my activities as getting my blood pressure up seems to activate the spasms.  I'm also taking every "non-inflammatory" and nerve strengthener supplement out there: (Turmeric, ginger, fish oil, resveratrol, Spirulina, vitamins with extra B's and C's and, I have been taking CBD (just started 25mg in the morning, people say it is a non-inflammatory and can help relax the nerves as well). I also use a CBD topical over the nerve area on my face. 

Let's hope the Gabapentin, plus time) reduces the frequency even more, once it is really in my system.

I will keep this updated. 
1.4 x .83 x 6 cm (14 x 8.3 x 6 mm).  watched slowly grow for 2 years then CK January 2022.  3 months post CK hazy head, 6 months post CK now having hemifacial spams same side.

donjehle

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Re: Hemifacial Spasms beginning 6 months Post CK in Jan 2022
« Reply #6 on: September 24, 2022, 06:55:43 pm »
Your continued updates, Dlip246, are very helpful.  Thank you for sharing them.

I'm not a doctor, but I understand that CK can cause swelling of the tumor for a while until it eventually shrinks a bit.  So, I'm hoping this is a temporary situation for you.  The swelling of the tumor is supposed to be a good sign, as I understand it, that the CK is working.  But if the swelling of the tumor touches a nerve, it can cause issues for a while.

Again, thanks for sharing your experience.  It is very invaluable!

Best wishes on your continued recovery!
Don
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

 


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