Hemi facial spasms 2 yrs post GK

[cathyroe]

Hi Everyone,
I had GK in July of 2014, and last month (Sept.2016) started experiencing hemi-facial spasms. At first a few days apart, and now up to every day.
On the forum here, people talk about getting these "rare" hemi-facial spasms around 6 months out... .but 2 years out?  Hmmmm.......

My MRI done last month shows a bit of tumor growth, could be swelling I hope.  Just for anyone out there who MIGHT be going through the same thing,
Here is what Dr. Lusford said:

The facial nerve of course is very close to the tumor, and periods of stress may lead to temporary symptoms, which should not be a long-term problem. Less than 1 % of patients have any significant facial concerns even on a temporary basis.

I wonder, does this mean I am in the rare 1% of people with facial concerns, within the rare 10-15% of people who have tumor growth after GK, within the rare 1 out of a hundred thousand who get an AN? Gee.... why do I not buy lottery tickets with these odds?

Anyway, just wondering if anyone out there can comment on hemi-facial spasms this late in the game, and PLEASE tell me they go away eventually!

Thanks,
Cathy

[PaulW]

I don't know why but many of us have a few problems which just emerge at 2 years.
I had sudden hearing loss. Increased symptoms seem to be quite common at two years.
As for the growth. It could have happened a month or two after your last MRI and been stable or even shrunk after that. There are plenty of people that have not had their tumour shrink at two years. There is one person here whose tumour grew for 5 1/2 years before it shrank.
It mostly works out fine especially for smaller tumours like yours. I know we often hear about a 2 year journey.. I think it's three before things really stabilise.

[cathyroe]

Thanks Paul. It's always a relief to hear from someone else, and know we all go through a myriad of changes, symptoms, fears, challenges and best of all hope for a life where we feel better in the long run.

I googled what to do or take for nerve damage and repair, and read about stress just killing your nervous system and the big helper was vitamin B. So I got a bottle of B vitamins especially for stress (from Whole Foods) and have been taking 3 a day for the past week. I can't believe how much better I feel! My fatigue is just so much better, and I don't feel quite as tied up in knots from the stress. There is a lot of stress in wondering when the next AN shoe is going to drop.... what will today bring.... when is my face going to spasm again.... bla bla bla fear talk from the little voice inside that doesn't shut up.

I also have been drinking turmeric tea (also google Golden Tea)  for inflammation.  I boil ginger root, throw in some turmeric, black pepper, almond milk, coconut oil and honey. I have to tell you, I feel better!!!! Apparently the turmeric works better with pepper and a fat, thus the black pepper and oil. I have been drinking this concoction 3 times a day for the past 10 days, and my energy is much, much better. My nerves have calmed down a bit, I think. But this drink is supposed to be so very helpful for inflammation.

I hope this helps anyone out there with stress and fatigue. Meanwhile, I am trying to get past this phase of facial spasm nonsense!

Best,
Cathy

[ANGuy]

One of the effects of excessive B6 intake is nerve toxicity.

[Patti]

I had radiation 11 months ago and just had an MRI which shows no tumor changes.  Yesterday I did some very physical stuff (garage cleaning) and was exhausted.  I started getting facial pain during my work and it got even worse for the rest of the day.  This morning I feel better after a night of rest. Looking back, the times when i've had bad symptoms have been during times of stress, physical or mental.  This past summer I thought for sure I had extreme tumor growth.  The day my stress resolved, my head and face pains went away!  The very day!  Somewhere on this sight I read about stress makes symptoms worse.  I wish I could hear about that more so I don't worry every time a flash of pain goes through my head.  But I wanted to pass this anecdotal info to you so you don't worry as much!  Patti (a fellow worrier; learning not to)

[cathyroe]

Just an update on the facial spasm front. They continue in a weird pattern. I will be spasm free for 4 or 5 days, and then have 2 or 3 days of daily spasms. I really can't figure out the trigger for all, once it even happened in my sleep and woke me up! But I do know that if I feel like I am going to cry or be upset, it spasms right away. My dad passed away not long ago, and sometimes the grief just hits me like a ton of bricks, but I know if I cry the spasms will take over and I will be even more upset. So.... I suck it up as much as possible. Today I was walking and thought I'd throw in a brief jog, but 20 seconds in to the jog...wham. Monster face.

I talked to Dr. Lunsford's assistant, Lana, and she says they want me to just stick it out. They believe it is temporary. She said if I "insist" on a prescription, they will prescribe gabapentin or Ativan. I am going to wait it out. I'll keep posting to if there is anyone else that suffers from these pesky facial spasms, I can offer some information or experience.

Best,
Cathy

[cathyroe]

Updating just in case anyone else ever goes through this. I am 28 months post GK and still having facial spasms. They started in Sept. and still continue, now more frequently as I go in to my forth month of hemifacial spasms. I talked to Lana (Dr. Lusfords assistant) again a few weeks ago, and she still says just stick it out. I've read about other people getting hemifacial spasms post GK, but at 6 months post... not 28 months!
But, I'm sticking it out. Don't really know what else to do.

I notice a pattern for some of them. If I do cardio exercise, I get the spasm during the recovery period afterwards. (so yes, I have stopped cardio exercise for now). It also seems to happen first thing in the morning, like 4 or 5 minutes after I get up. Sometimes though, it just comes out of nowhere. So.... sticking it out for now.

Cathy

[Patti]

geez!  so sorry to hear this!  i don't have a clue but just wanted you to know that you are heard! 

[PaulW]

The symptoms you describe could be a combination of increased blood pressure/flow to the nerve and the Acoustic Neuroma. Waking up increases your blood pressure so does cardio. It could be sudden blood flow increases to the nerve are causing the spasms. I had something similar with hearing and dizziness. My hearing would start off bad in the morning and improve as blood pressure increased.

[cathyroe]

Thank you Patti, that was really kind of you to respond.
And thank you Paul, I was kind of thinking the same, increased blood pressure or heart rate. Lately they have been more frequent and come out of nowhere, like when I am talking on the phone or just laying in bed. So weird. I hope and pray that they subside very soon. It's my Christmas miracle wish!

Best to all of us, and I am actually hoping, praying and making a Christmas wish for all of us. It's such a blessing to have this forum.

Cathy

[flash]

I had Gamma Knife this past August and am experiencing the exact same thing - and only in the mornings.  Usually once a morning (most often after a shower or during a workout), the right side of my face will spasm and contort.  It lasts for about a minute and I described it to the doctors like a storm... builds gradually, sustains for 30 seconds or so, and then dies down.  They are not concerned and feel like they'll subside over time.  I'm one of those oddballs that presented with facial numbness/tingling, but no hearing issues - so this makes sense.  My hearing is still great except for very mild tinnitus.

[cathyroe]

Yes, mine are now mostly in the mornings. It has been going on for 3 months now, but only for the past 3 weeks or so has it become mostly in the mornings. It seems to be within the first half hour or so of getting up. So weird. I am particularly concerned because my GK was 2 and a half years ago! My doctor also thinks I should just wait it out and it will fade. I hope and pray so! My doctor is Dr. Lunsford. Is your? That would explain us both getting the same advice.
Cathy

[MG]

Hi cathyroe,
So sorry you are going through this. I haven't been on the forum in quite sometime since my Cyber Knife six months ago. I had facial spasms a month after CK. It scared me! I was put on steroids for 10 days and they subsided. I have been okay since then except for a burning facial and ear pain like a hot poker. Lately, it seems to be going away. I am due for my first MRI at the end of this month to see if there is any change. I hope you see a change soon. I wish you a speedy recovery.

MG

[cathyroe]

Thank you MG. My best wishes to you. Hope all goes well with your MRI.

[cathyroe]

Another update on the Facial Spasms, just in case anyone else goes through this.
I'm now 2.5 years post GK and the facial spasms have been going on since Sept. Now, 4 months later, they are gaining speed. In the past week, I have multiple spasms daily (like 8-10 times in a day). If I eat, drink, exercise, brush my teeth, talk....  maybe just stand up or sit down. It's a scary and unpleasant malady for sure.

I notified Dr. Lunsford recently (who in Sept. wanted me to just wait it out without drugs) and he now says I have 3 choices. Drugs, botox, or surgery.
I'm trying the drugs. I started Gabapentin 4 days ago. Actually, I was only having 2 or 3 spasms a day and when I started the gabapentin, they went up to more a day by far. I wonder if it's the drug? Or would this have happened anyway?

Also, my  neck seems to be in constant spasm, like every 30 seconds or so. If I put my hand on the side of my neck (like feeling my pulse) I feel the spasms going on.

I will contact Lana (Dr. Lusford's PA) in a few days and let her know the situation. Although Dr. Lunsford is considered "world class" for GK, it really is hard having your doctor  a thousand miles away. And I never quite get a satisfactory answer via email or one of his letters, it's so much easier to have a doc where you can walk in the office and ask questions face to face. 

If anyone else out there has gone through this facial spasm journey, please let me know how it is going. I have read on this forum a few accounts, not many. It's supposedly "rare" ,as Dr. Lunsford and Lana tell me repeatedly. So there is not much out there about it.

Best to all,
Cathy