My personal gamma knife experience 1-24-13

[cindyjarrett]

Bonnie,

Just read your post.  At four months I began having pain in the left side of my face and ear.   It ran from the top of my head to my jaw.  I went to my ENT who said I had TMJ.  I do not believe I have TMJ.  After calling my doctors, they had me come in for an MRI.  The MRI showed treatment effect (swelling).  The tumor was pressing on a nerve.  They gave me steriods which did take the pain away.  I now at 6 months have twitching in my left eye and occasionally a little quick pain in my jaw.   However, I feel back to normal.  My tumor showed darkening in the center, which my doctors feel was a good sign the tumor is dieing.  I do go back in June for another MRI.  I too feel things could be much worse.

Cindy

[Bonnie B.]

Cindy,
Your story is just about identical to mine.   It was good to see that someone else was experiencing the same symptoms.    I am so glad to see the your tumor is starting to die.   Keep me posted on how you are doing.     I will be seeing my ENT next week.  I will let you know what he has to say.

[cindyjarrett]

Bonnie,

Yes, please keep me updated. 

Cindy

[robinb]

My 3 month GK anniversary passed yesterday; halfway to my first post GK MRI...

I am still getting facial spasms a couple of times a week; only happens when I brush my teeth. Not sure what to make of this; I just pause and wait 20-30 seconds for it to pass.

All in all, I can live w/this so long as it doesn't happen when I am with people; I managed to get a picture of my face during a spasm the other day (no i will not post it). Someone else called it her Picasso face; perfect description!

[robinb]

The spasms continue; almost daily. When I was flying home had a second one during a moment of stress during my layover in /chicago. I called and emailed Dr. Lunsford (response time within an hour!). He was traveling so I only spoke at length with Lana, his PA, but he emailed that he wanted me to try low dose Valium. Started Friday evening, had spasm yesterday while brushing teeth and two more milder ones during the day while in the sun. Another strong one this morning while brushing teeth. Does not seem to be improving at all. Will try to reach him this week before we leave on vacation Thursday (4 more flights to/from; then week after we return another 4 flight s for business travel).

[jsanders1379]

so sorry this is happening-keep us posted

[robinb]

Thanks.

A second one today while in sun-

whats odd is that I haven't had one while brushing teeth at night; just in the morning...

[robinb]

Latest update:

Yesterday, I sent Dr. Lunsford and his PA, Lana, the history of all my activity, flights, dental work since the GK.

Dr. Lunsford said I need to slow down and it should improve.

Had appt to work out last night, all day no spasms, then had two really strong ones yesterday while working out with my trainer during uphill walk and again when heart rate was recovering. She actually timed it, which I had not done before and from start to complete finish lasted about 1m/15 sec. We finished workout at very low level. I cancelled for tonight as going to try to heed Dr.s advise.

Had a long talk today w/Lana as Dr. L is at a conference. She said I really need to give myself time, try to slow down my pace and they believe it will pass. Also, that I had not given Valium long enough time, I could increase dose by 2 more mg per day (which I did since working from home today, was really loopy).

After our Mexico vacation and next business trip week of 5/13 I will hold off on travel for as long as I can. She also recommended herbal tea with mint or thyme, which I will try.

No spasms today.

Will post another update after we return on the 9th.

For everyone reading this that's thinking of having CK or GK, I have no regrets, this is just a bump in the road.

[dtorres135]

It does sound like to do a lot of activity but then again we are all trying to be our normal selfs.  Since diagnosed, everyone has noticed a big change in me.  I'm not as social because I can't hear or follow conversations and I 'm fatigued all the time.  My procedure is scheduled for june 25th and I know I won't be able to bounce back to my old self for quite some time but man I hope I get there. 

[Petrone]

Hi Robin,

I hope your PA is right and these spasms subside soon. Her advice to slow down a bit can't hurt either. You've been through a lot - give your body some time to get back to your normal pace and lifestyle. We can all benefit from moderate exercise, a healthy diet, getting enough rest, etc. Ever try yoga?  Having an AN led me to yoga about a year ago and it's been a real game-changer for me in many, many ways. 

Be well,
Petrone

[robinb]

Back from a wonderful vacation in Puerto Vallarta. Despite spending most of the time lounging, the spasms continued; still while brushing teeth and the while turning over on a chaise from back to front....hear whooshing sound in head at those moments. Avergae was two per day. So I stopped taking the Valium. Spoke w/doc while en route home and they want me to now try Neurontin. Will start that tomorrow. Its a 28 day regimen.

However, my travel grind is in full swing next week; two cities, five or six flights; my itinerary is changing as I write this. I am hoping after that I can slow things down for at least a month.

Petrone- I did have a wonderful massage while on vacation; spasms slowed to once per day just while brushing teeth for the last 3 days. I haven't done yoga in over 20 years (it was too slow for my Type A personality!)

Will update after a week or two as to response to new med. Be well everyone!

[robinb]

Here's the latest update on my spasms;

I have been on Neurontin for 10 days (generic Gabapentin). the dosage increases every two days or so. The spasms have decreased in frequency and intensity. I have gone 1-2 days with no spasms even last week when I traveled to 2 major cities over 5 days and took 5 flights.

In logging the spasms, they occur when I brush teeth (relaxed facial muscles and/or switch to electric toothbrush and they rarely happen. Also continue to occur when I have been lying/sitting and suddenly go prone on stomach w/head up to read or work.

Had none yesterday and today, so I decided to work out. After cardio when heart rate peaked and was during recovery I had a strong spasm.

So theres a pattern here 99% of the time. The Gabapentin has definitely hepled and I was feeling good about it till the spasm this evening.

Scheduling another call w/Dr. Lunsford's office.

Other than that, I feel really great. I still have occasional dizziness during workout and the tinnitus comes and goes. Most of the time I can tune it out.

Will post again if anything to report.

I remain available to speak to anyone; just send me a PM.

[grammyslim]

Life is good and so is radiation!!!!!

Singing in the rain.  It's dead, it's dead.  Radiation done 5/2012
  Had MRI today - no new growth - tumor black not taking up contrast - no MRI for a year (2014) unless some problem arises - but Dr. doesn't think I will have any new issues.  Still some swelling but that should go away before/by next MRI.

grammy slim

[robinb]

Grammy Slim-

That is so awesome; congrats on the great news!

[Petrone]

Grammy Slim,

Awesome news!!!  So happy for you.  Hoping for continued recovery for you!

Best,
Petrone