My personal gamma knife experience 1-24-13

[theshawn65]

Hi All-

Here's my 6 mo post GK/MRI update:
.....

When I got the radiologist report from the MRI I was very alarmed as it indicated 6mm of growth; in his words"there is now a significant extracanicular component to the porus acusticus contacting the pons measuring 10x9 mm and transverse 20.7mm. On prior exam this measurement was 13mm". Note that MRI when I had GK had it at 6mmx8mmx14mm. 

Needless to say, freaking out and sent to Dr. Lunsford. I called his PA as I was scheduled to go to review when he returned on August 19th. Lana said he may be in the office on the 16th and she's try get him to review then. Well he did, here's what he had to say:

I am not certainly opposed to using a trial briefly of corticosteroids if you note fluctuation in hearing, but in general, it is not a good long-term solution.  As you know, it is our hope that hearing can be stabilized.  In addition, we hope to stabilize further tumor growth.  Approximately 4-5% of patients will have some measureable temporary volume enlargement of the tumor in response to the maximal time of radiosurgical treatment.  This will stabilize at this level or shrink more over the course of an additional period of observation.  There is a long-term 98% chance of tumor-growth control.
 
            I would get a new scan done again in one year.  Overall, we are quite comfortable with the current appearance.  There is no evidence of any reaction or edema.

He also said to continue with the low dose Gabapentin.

Needless to say, not warm and fuzzy like his PA, but that's not his style.  I still have questions, so going to have a call with him this week and will report back any details.

Well, if Dr. Lunsford found no cause for alarm I'd try not to yourself. Research does seem to indicate some do swell more after treatment. Dr. Warnick at the Mayfield Clinic (the guy I'm going with) said this can be a good sign. Your doctor using the term "quite comfortable with the current appearance" seems like a positive imo.

Good luck and God Bless.

[nftwoed]

Hello;
   I believe some Drs. will give the diameter of the AN in one report, then tumor volume in another report. Tumor volume will be a much larger number. This has confused some pts. and group members from another group I was on.

[nftwoed]

Hi;

   Dr. wrote: "I am not certainly opposed to using a trial briefly of corticosteroids if you note fluctuation in hearing, but in general, it is not a good long-term solution."

   Absolutely correct. Steroids are hard on internal organs and many Drs. Rx them but once a year. It's treating the symptom and not the cause.

[robinb]

Well after more emails and lengthy discussion w/Lana, the PA and her back and forth w/Dr. Lunsford (who I never actually did get to speak with), I am comfortable with his review. I did ask why not concerned since radiologist indicated "significant growth". She said the change is in the volume, was reviewed by the entire GK team at UPMC and all concurred change in volume at 6 mos is not a concern.

We discussed my spasms (none since 6/11, longest record so far) and I am to continue on 100mg of Gabapentin 2x daily until I am spasm free for a month.

Another steroid taper OK if I notice ongoing fullness in head and ear. No more than a few times a year.

The other recommendation is to have a local neurologist to do a neurological review with my history of spasms, and especially since I had Bells Palsy some 15-20 years ago. Will do that in next few months.

So MRI in a year. I am OK w/this.

Life back to normal, working out 3-4 times per week, travel greatly reduced for next few months.

[robinb]

Meant to say no spasms since 8/11, not 6/11 (I wish).

Anyway, that nearly 3 weeks so hopefully will have a month of no spasms and will try to stop the med.

[robinb]

Good news to report-

I have been spasm free for one month!

Although travel greatly reduced, I am back to working out; Cardio and weight training 3-4 times per week and no dizziness. Balance is as good as it ever was.

Tinnitus nearly non existent and when it is hardly noticeable.

Still have the occasional fleeting pain in bony area behind AN ear. I asked Dr. Lunsford about this and continuing w/Gabapentin. Will post his response.

I remain available to speak or email with anyone that wants more details about my experience. Just PM me.

[Echo]

Wonderful news Robin! Keep us up to date.

Cathie.

[robinb]

I had a call back from Lana, Dr. Lunsford's PA today.

They reviewed my scans again and don't see anything specific that would cause the passing pains I mentioned. She did say it's likely the trigeminal nerve is irritated from the GK. Like the spasms, they believe it will pass.

I was advised to stay on the low dose of Neurontin for another 60 days and check back in at that time if still free of spasms, sooner if they resume.

They still recommend I see a local neurologist for a baseline evaluation. Once I find one, I will do so.

So unless anything specific to report, I will not be posting further.

Thanks to all for the encouragement and support.

[robinb]

Well, after six weeks of no spasms, I had a slight one yesterday.

What I mean by slight is that my eye was not all the way closed and muscles not as tight as full spasms. Also, did not go down into the neck muscles. Had a little tingling and eye twitching after.

All in all, not what I would call a big deal.

Had a physical with my PCP this week. He was amazed at how good my eye hand coordination and balance were.

[robinb]

I saw a local neurologist today for an eval. All good; no issues related to adjacent nerves related to AN.

He did make a comment when he saw my MRI disks were from an open sided facility. However, once he saw the scans he said they gave the data needed and found no issue with them.

For those that need good news, I can say that having an AN is not a life changing episode for me. Other than hearing, occasional tinnitus my life is the same as before. I wish my knees were in better shape!

I missed no days from work due to the AN and GK (other than for day of procedure and travel to Pittsburgh). I work 50+ hrs a week with extensive travel. I work out 3-4 times per week. There is no new normal, same as it was!

I wish everyone good health!

[robinb]

I am happy to report that I have had another month of no spasms or any other symptoms.

Will be contacting doc to see if I should discontinue the Gabapentin.

Have also been doing some air travel, although not as heavy as the spring.

Here's to continued good outcomes for all!

[Echo]

That's wonderful news Robin.  I hope that's the end of the spasms!!

Cathie.

[cindyjarrett]

Robin,

So happy for you.  Hope everything continues to go well.

Cindy

[robinb]

Latest update from Dr. Lunsford's office:

Reduce the Gabapentin to 100mg 1x daily. However, if air travel picks up or cardio workouts more frequent, and/or increased/new stresses, take another 100mg in the evening.

I just got offered and accepted an incredible new job, so that will increases stress, but I won't have to be on a plane a dozen times a month. So maybe they will cancel each other out. However, travel will be more local, which means spending time on LA freeways.

Just life...I can deal w/that.

[ASG]

Hi Robin,

Congrats on the new job and on feeling good!  Career stress feels so much better than AN stress.

Adam