My Personal Gamma Knife Treatment Journal started June 10, 2012

[MDemisay]

Dear ANgels and newbies,

I think the facial twitching may be getting better.....

Mike

[chloes mema]

Mike

Sorry to hear about the facial twitching but I must agree with JW.  You should call your doctor to report what you're experiencing so they can note it in your file and ask them if they can call out a prescription for you.

I called my neurotologist immediately after my first go round with what I believe were hemifacial spasms (doctor internet), he called out a Medrol 4mg pack which I started today.  Medrol is also a type of steroid.  I've spoken with the doctor's office every day, they are concerned about this.

I picked the prescription up last Friday, it took me till today, Wednesday, to get up the nerve to take it but I think it's helping, I don't feel like something is "crawling" along the nerves under my skin on my face.  What convinced me was my daughter gets Botox injections, she explained to the NP what I was experiencing, the NP explained fully to my daughter what was going on & strongly encouraged her to convince me to take the steroids.  So after talking to many friends, family, doctors, and the pharmacists I'm almost through day one of a six day regime.  Medrol pack is like a Z pack if your familiar with that antibiotic.  As a side note, it was a cheap prescription as prescriptions go. 

Good luck with this, will keep you in my thoughts & prayers.

Karen

[MDemisay]

Dear ANA friends,

Today I want to say that although we seem to be at different points in our journeys, there is always a tragedy that gives us pause in this case it is the superstorm Sandy a lot of tragedy associated with this one and it just makes sense that people should listen to the warnings that come from elected officials. There could have been a lot less loss of life it seems. Take a moment to pray for all those lost in this terrible storm. It makes no sense!
 
Mike

[millie]

Mike-
How are you feeling these days?  Did you call the doctor?
Mil

[MDemisay]

Dear Millie,

As these facial twitches seem to be diminishing I felt no need to call the doctor. How are your symptoms?

Mike

[millie]

I am hanging in.  Took the jitney to an alternate NYU office to meet with my doctor this past Wednesday. My left side (AN side) is still droopy but not as droopy as it was.   He said my face is starting to come back, and it is better.  Just takes time.  He said I could feel numb and fullheaded for twelve weeks. While the tumor was bigger than they thought, they got it all and it was pressing on my facial nerve but they did not damage the nerve.  (Perhaps they stretched them, though. ) I am not as numb as I was.  Left eye tearing a lot today, and nose running.  My incision is good.  Doctor wants to see me DEc. 6 when I will also see the neurosurgeon for that post op.  Will try to make both visits in one day.
Today my husvabd and I went to the grocery store, but with my eye and the fullheaded feeling I sort of hung on to the cart.   I can't tell if my eyeglasses help or hurt  but I dare say my eyes are denfinitely better than they were three weeks ago.  Today I also walked around a track and looked around a lot.  Tomorrow is a nice day so I plan to walk around the block.  I need to be a bit more pro-active.
Using lots of eyedrops.
Glad you are feeling better, Mike...Thank Goodness.  Millie

[MDemisay]

Dear Millie,

I am sorry that at this writing so much has gone on with Hurricane Sandy

NYU Langone remains closed. Is there an alternate site where you can get treatment?

Good news for me I have intermittent facial twitches that are not as bad as they once were.

Merry Christmas and good health to all!

Mike

[millie]

I had gone to an alternate site for my November visit, but on Dec. 6 the doctor saw me back at his Langone office.  He said he sees improvement in my face.  I do too. Next visit is January 7th, and if I need any therapy he will tell me then.  He said I am still healing from the surgery.

I am sort of missing my hearing in my left ear lately!  Maybe that is because I am getting around a bit more.  I am not yet comfortable driving.

I am glad your spasms have quieted down.  I have had a little twitching/spasming myself lately-fleeting, but something new.

Thanks for your support and a blessed Christmas to all.

Mil

[MDemisay]

Dear Millie,

Don't worry be happy! Your surgery was in October, you were fortunate in that, some people had surgery scheduled in November with Dr. Kondziulka in NYU now they must reschedule to Hackensack Hospital because the Gamma Knife machine along with the boiler were totally submerged by Super storm Sandy at NYU Langone.

As for driving that  can wait!

Have patience Milly, slow and easy does it.  It gets better from here, it really does! Being an an old AN surgery patient myself, I can tell you!

Concentrate on your balance....ask about a referral to Kessler Rehab ( which is in New Jersey). It's number 1 on the East Coast!


Be well and enjoy Christmas with your family!

Mike

[millie]

Thank you Mike...I was feeling kind of down but your words make me smile. 
Have a blessed Christmas.

[millie]

And thanks for the info on Kessler Rehab. Also, I had no idea regarding the extent of the storm damage.  I sometimes wonder about being in  the NICU  just nine days before. I was lucky.

  I will ask the doctor about Kessler  when I see him December 7...for the feeling in my head. (the weightless spirit that sits on the left side.)
Thanks again, Mike

[MDemisay]

To All,

I couldn't have made this treatment decision without your support and respectful guidance! I feel very humble and gratified to be in your company (the company of friends) as I have always felt there is strength in numbers! Even in my darkest hour( the one where I was filled with self doubt) at least I could come here and "talk" it out!

A Happier Healthier New Year to all!


Post Script: Few if any facial twitches!


Best wishes and vigorous hearty hugs to you!

Mike

[MDemisay]

Dear AN friends, ANgels, Newbies and Prayer Warriors,

Good news my facial spasms have diminished so much that I cannot remember having them for quite awhile. Could the necrosis be shrinking?

I certainly hope so!  I want everyone to note it has been 7  months to the day today! The reason I didn't make a big deal about 6 months was because I still felt some facial spasms.

As we begin the New Year, I wish you all a better year and continued good respective  journeys toward wellness!

Today is a good banner day for me and the future looks very bright!!!

Thank you everyone for encouraging me along the way, I certainly couldn't have come so far and been so up about it!

I will continue to "pay it forward" with my support of the AN experience if you'll have me!

Your friend,

Mike

[Jim Scott]

Hey, Mike ~

Congratulations on your excellent post-radiation recovery!  Please be assured that your continued presence on the ANA forums is both welcomed and appreciated. 

Jim

[cindyjarrett]

Mike,

That is wonderful news.  I have been following you these last few months.  I am three months out from my gamma and feel great.  Keep us updated.

Cindy