Triggers to Go from WW to (Surgery or Radiation)?

[jmarkle]

I am wondering, for those that have been in WW what was the final trigger for you to decide on (Surgery or Radiation)?
Note: I understand that everyone one is different, and their thresholds for dealing with this are different, just curious of reasoning used by others.

I am just not quite sure what my final trigger for further action will be at this time.
I was diagnosed in Nov 2013. I had 2 opinions, both of which suggested if it's not growing then just WW. Although they still stated that any of the 3 options are reasonable.  I believe they leaned towards WW based on the fact that my symptoms at the time were minimal and wanted to establish a base line for growth.

I had MRI at 3 months after diagnosis, and hearing test 6 months after. There have been no changes in MRI and some changes in hearing in regards to word recognition, of which is to be expected as these are usually slow growing. I have been noticing the metal taste on my tongue, side of tumor recently. Doctor did not seem too concerned about it (saw him this week).

Next steps are another MRI in 6month from last one (Sept. 2014) and hearing test and Dr visit in 6 month from past test (Nov 2014).

[jsanders1379]

My trigger was tumor growth after 6 mos. in W&W. Good luck...

[arizonajack]

My trigger was a 20% growth in 6 months after diagnosis.

I had already lost all my hearing my the time I was diagnosed so I opted for Gamma Knife.

Word of caution. If you are already experiencing a loss of hearing you are pretty well assured of Single Sided Deafness within a year. Even if the tumor doesn't grow it is still doing you damage.

[Ruthie Mac]

My trigger was a doctor who convinced me that any of the common symptoms (hearing loss, tinnitus, imbalance)  is an indication that the tumor is active and needs to be treated. I was given the option of W&W by some doctors, but the logic started to make no sense. The probability of the tumor growing, even slowly, was likely, so why wait until it's too large to limit my options of treatment. I wanted to try the least invasive option, so while time and the size of the tumor was on my side, I went for radiation. 

[Echo]

My symptoms slowly started to change and increase after my diagnosis.  My one year follow up MRI showed growth from 1.8 cm to 2.4 cm.  That was more than enough incentive for me to move forward and have Gamma Knife.

Cathie.

[TJ]

The trigger in my case was the AN doubled in size in the six months between MRI's.  As you know they usually grow fairly slowly.  But mine took off, and the doctor said now is the time.

TJ

[MG]

Hi All,
For those who decided on Gamma Knife or some other kind of radiation treatment, how are you feeling now? Do you still have dizziness, pain, balance issues, hearing loss more so than before? I could go on and on but you all know the symptoms. I also read about some facial problems that you might have after radiation. That really scares me! I hear that it doesn't necessarily happen right away either. Maybe a year or more?  I am so confused on what to do. I will be getting my second MRI next month to see if it has grown any in a year. I have made it through W&W for a year with a pretty good attitude but now I am doubting myself because I am starting to get a little dizzy again. I hope someone can shed some light for me on these issues I mentioned.

Thanks!  MG

[robinb]

Hi MG-

I feel great, no real issues other than what I started with; no useful hearing and tinnitus.

Any side effects I had have long subsided; please go through my thread if you haven't already.

Best,
-Robin

[Echo]

I also feel great most of the time.  Yes balance issues are continuing, but that was to be expected and they have certainly not gotten worse.  I expect things to improve.  My hearing has changed minimally, and my word recognition has gotten lower. No change to my Tinnitus.  I still have days with a wonky head, but much fewer than pre Gamma.  Headaches are gone!! 

As for facial issues, when my AN took on a growth spurt and reached 2.4cm, my Neurosurgeon (who does both surgery and Gamma Knife) told me I had a 25% risk of permanent facial paralysis with surgery and a 2% risk of facial "weakness" with Gamma Knife.  I have no facial issues.

When I looked at the risks I personally faced with surgery and then Gamma Knife, Gamma became a much more positive route for me to personally choose. 

Cathie

[cindyjarrett]

Had GK 20 months ago.  The only side effects I had occurred at 4 months out.  I had pain in my face on the AN side.  Doctors put me on steroids, and I have been fine since.  I do have tinnitus but not bad.  I go for the next MRI on June 10.  Feel great.

[MG]

Thank you all for the information. I am very happy to hear you all are doing well!

God Bless! MG

[Kat From Indiana]

My triggers: hearing loss, tinnitus, balance problems, right sided headaches, crooked smile.....  I was diagnosed the end of March 2014 and had Gamma Knife June 13, 2014.  It took me less than 3 months to come to the conclusion that something needs to be done, so go ahead and do it now, while it is still small enough to give me more options, while my health is good, and while I have insurance and have met my deductible.  And while Dr. Lunsford in Pittsburgh is still working.  I didn't want to wait only to find that he retires before I had the procedure! I am always anticipating.... It's a curse, I know.

[JeanneR]

I was glad to see this thread.... I'm ready to treat, but i think Drs. are going to recommend W&W.  My next appointments are for vestibular testing,  then a 15 min.  appt.  with surgeon,  30 min with ENT and finished with a vestibular therapy appt. 

It scares me that I think they have already decided and i will be told  too bad,  come back later.   

If your physicians suggested W & W,  did you agree on a trigger for prompt treatment? 

I will be moving to SC in November.   I would greatly appreciate any recommendations of AN  specialists in SC.   

[Ruthie Mac]

Jeanne,
I had vestibular testing done at Mass Eye & Ear in Boston prior to choosing radiation. I'm still not sure how helpful it was. My Radiologist didn't think it was necessary, but the Neurologist wanted to rule out any other cause for the balance issues.
My balance symptoms were classic to the AN, but I wouldn't have know that except for reading other people's experiences on this forum. I went ahead with the testing in the hope of establishing a baseline for the nerve damage.
I found that none of the ENT's I consulted even understood or cared about the vestibular test results. Eventually, after radiation, when I was working with a vestibular physical therapist, she found the test results fascinating and used them to design a PT program for me, with the high hope of measuring improvement.
However, because I chose radiation, the tumor showed swelling at 6 mos. - yet, my balance improved, so apparently the theory of the brain compensating must be true.
So maybe my point is: not to let vestibular test results sway you from whatever treatment you choose, including W&W.
Ruthie

[elsie]

JeanneR,

I am in the same boat as well.  More than ready to get my regrowth out, but have reluctantly joined the W & W brigade.  I pushed back on my surgeon, on a second consultation and with my neurologist, who also shared my films and history with additional AN docs.  All are in 100% agreement that I should not even consider treatment until my first follow-up MRI - between 9-12 months from my first one in Dec.

I also pushed the neurologist on what triggers should get me back to him before my MRI.  He said that:  1.  My symptoms will come and go, get worse for a little bit and then retreat. (Tinnitus that has dramatically changed its 25 pattern, right sided facial numbness, numb right tongue, extreme soreness around my skull "divot" are my current symptoms - lost my hearing in 1st surgery so I really had a tough time figuring out what was going on when these symptoms slowly appeared).  This has very much been the case.  2.  Trigger for immediate consultation - new, sustained and noticeable symptom or dramatic, sustained worsening of my current symptoms.  I don't like W & W, but when all docs agree, I have to listen.