CK Treatment to come

[darkorchid12]

I just got back from UCStanford Friday where Dr. Chang and Hancock recommended the CK. `I was told I don't have an acoustic but a trigeminal  schwannoma.  That makes this thing a little more rare, I guess, but the next bit is confusing.  For those of you on the "post" side of treatment I was told that when the tumor begins to die the center will darken on the MRI.  Well it seems in it's current untreated form there is darkness in the center.  Anyone have something similar?

Also doctors weren't that forthcoming about side effects, from what I have read here they range from headache, dizziness, and fatigue?  In spite of it all I think I will go forward with this treatment plan.  Perhaps if I was younger and my tumor larger ( I'm 58 ,my tumor is 15 x11 x9) surgery would be the choice.  Dr. Chang wanted me to clearly understand that the CK would be my best choice.  I have read several posts about these issues but any feedback will be appreciated!

Thank you all!

One last note and it is really just a vanity thing-with the radiation does hair fall out?

[PaulW]

Does your hair fall out, normally no..... You dont receive enough radiation for that... Some people do get some temporary hair loss but it is not common. 

Dark bit in the middle...... it doesn't mean that it is dying... All it means is their is less gadolinium dye flowing through the middle of the tumor when the MRI was taken.... That probably just the way your tumour is made up....

Side effects.... there are actually very few side effects from the radiation directly on the brain..

With Acoustic Neuromas, most of the side effects are caused by the Facial, and Vestibular/Hearing Nerve taking a punishing, and nothing to do with the brain itself.... I would imagine with a Trigeminal Schwannoma the side effects would be related to the Trigeminal Nerve.

Your trigeminal nerve will probably be saved by CK, if they operate they may damage it.

[darkorchid12]

Thank you for the response! From my experience and it seems for others too, this "before the treatment" time is so hard! 

I appreciate this forum so much!

[john1455]

darkorchid12, the darkness may be due to cysts within the tumor, like mine had. I had no side effects from my CK treatment at Stanford. My symptoms (disequilibrium, tinnitus) did worsen ever so slightly for about a week afterwards but other than that, I feel the same as before CK. Stanford's "After CK What Can I Expect" information sheet lists headaches, nausea, fatigue, and temporary localized hair loss as possible side effects but I experienced none of these and from my readings on this forum, most patients experienced none or very few post treatment side effects. That is the prime reason why I chose CK because at 65, I did not want to be saddled with more problems and any adverse impacts on my quality of life.

[PaulW]

I did suffer from nausea and fatigue after CK but I put this down to a Vestibular Nerve that copped a bashing...
My hearing and balance were somewhat intact prior to CK.... Both got worse, then got better...
From people I have spoken to that have received Gamma Knife or Cyberknife... The people whose hearing is gone suffer far fewer problems if any after GK or CK... Spoke to a radiation oncologist and they said when they do other tumours eg small Meningioma's they see very few side effects as opposed to AN's
 
Most of the "Side Effects" from radiation for Acoustic Neuromas can be seen here!

http://vestibular.org/understanding-vestibular-disorder/symptoms

I expect side effects of radiation that you will experience will be related to the Trigeminal nerve.... Mind you that nerve is much tougher than the hearing/balance nerve, so maybe side effects will be rarer 

[darkorchid12]

Nothing like a new wrinkle to throw plans off.  In the beginning, when I thought to send out mri results to a variety of clinics, one was UCLA.  They just contacted me yesterday to say that the last mri w/wo contrast needed to be repeated, their doctors couldn't give a consult without a better image, but they thought that surgery might be the best option.  I am so confused!  I have sent the exact same images to Barrow Institute (they thought surgery would be best), the House Clinic (who said as long as I wasn't in terrible pain to "watch and wait"), lastly at Stanford where Dr. Chang recommended Cyberknife. 

So I have read in these forums that this is not uncommon. Surgeons like to do surgery, radiologists like to use x-ray, etc.  So I am working hard to keep my sanity.  I really am not sure now what to do, except I will most likely not get a second mri for UCLA.  If the other three had no problem with my current images, I think that is the way it will stand.

Any suggestions, thoughts, opinions?

[ANGuy]

Your "problem" is that all of your Drs. are correct.  You are a good candidate for all three approaches.  If you waited a couple of years, and went with surgery, you wouldn't be too old for surgery.  If you waited for 10 years and got radiation you wouldn't have to worry about the rare, but horrific, brain cancers that could possibly result for radiation.  If you had either treatment now, odds are, you'd come out fine. 

The odds are against it, but it is not impossible that you could go year by year and see no growth, and eventually die of some other cause like heart disease etc.  My father had treatment for his prostate cancer.  He was just at that age where some Drs were telling him to just let it be, and others thought it was prudent to treat it.  So, he went through real hell with the radiation treatments.  They tore him up with pain and burning for a few months over the series of treatments.  He had several procedures to help him urinate better, but ultimately had to use a catheter at least once a day for the rest of his life.  They "cured" his prostate cancer, but he got pancreatic cancer and died at age 71.  With 20/20 hindsight, he shouldn't have bothered with the prostate treatment.  For all the grief it caused him, it added nothing to his longevity and actually decreased his quality of life.

[darkorchid12]

To Mr. Anguy,

It has taken me a few days to mull over your comments about what I openly listed as issues I was having about what treatment to use.  I think what you said was perhaps revealing about your treatment choice.  I know for me, my father (who had been told he had a month live) went ahead with open heart surgery.  To quote the surgeon, "he went through the surgery fine", but died the next day.  Did it freak me out about treatment options and the possible results?  You betcha.  That is why I am even now struggling with what choice to make.  Weighing all the options and having the possibility to use any one of them doesn't make it easier.  As it has been said hindsight is 20/20.  If I could have aided my father with his choice, well at the end it was still his to make even though it was painful to all who loved him.

At this point I am just too conflicted and I think I will take a page from your style and wait to see what happens next.  Perhaps if my symptoms worsen then the decision will be made for me. I feel really too overwhelmed.

I wish you and all the rest of the forum the very best outcomes.

[Echo]

Hello Darkorchid12,

I completely understand your anxiety and frustration at trying to make a decision regarding treatment. I was diagnosed when I was 58 with my AN and it was 1.8cm.  This made me a perfect candidate for surgery, radiation or W+W.  I agonized over what to do.  I had multiple consults, read everything I could find on AN's, I spoke to many people and went to locale support group meetings.  I was paralyzed with fear facing surgery or radiation.  I have a history of not doing well under anesthetic and facing a 9+ hour surgery was not an option I wanted to consider.  I ended up creating a spread sheet listing all the pro's and con's for each treatment - both what seemed to be general risks for everyone and those that were of personal concern for me.   I then decided to wait 6 months for my next MRI and see what the AN was doing.  The darn thing grew!!!  Within one year it grew from 1.8cm to 2.4cm and I knew I had to make a decision. Gamma Knife was my choice and I have no regrets.

I don't know anything about the details of your trigeminal shwannoma or how they compare to AN's.  I assume you face many of the same risks that are present with AN's, so perhaps creating a similar grid will help you.  It truly is a personal choice. 

Based on a full years worth of research, I ultimately decided that at the age of 59, Gamma Knife was the best treatment choice for me, offering the best quality of life now.  When I considered all the health issues that one can encounter as they age (not to mention unforeseen accidents) it put things in perspective for me and I felt that any long term risks of radiation were no greater than any other risks I faced.

I wish you peace in your journey and trust you will find your own answer.
Cathie 

[Anne S B]

I had Cyber Knife treatment nineteen months ago at Johns Hopkins, and am going for my second follow up in two weeks (already had the MRI).  At my six month follow up there were signs of tumor death in three fourths of the tumor.  I am hoping my next visit will also be positive.  I had Cyber Knife after one year of watch and wait.  At the end of that year my tumor had grown slightly.  Since I was in my late sixties it made sense to attack the tumor before it grew too large for radiation.  After the three day treatment my main symptom was tiredness.  Subsequently I have lost nearly all the hearing in my one ear, and do occasionally have bouts of mild dizziness.  As to your question about hair loss, my only loss was to my eyebrows.  They both were affected, and don't seem to be growing back.   

[darkorchid12]

Well at this point I have made the decision to have the Ck treatment.  I am scheduled to go in two weeks. In my case, I do have loud ringing, dizziness if I turn my head in a direction( too fast) and not sure why, but tiredness. Perhaps the stress of all this is impacting my energy level.  Also I still do have cranking big migraines.  From what I understand not too much of this will go away but become the "new normal".  Some days I just want to hide and pretend this hasn't happened.  Well that doesn't work too well.

In any case,  because of this amazing forum, I found information about what treatments are available and their possible results.  Names of doctors and clinics where care is optimal.  At last the reports from all who participate that have helped me gain perspective.

Bless and thank you all.  I will keep you all posted on my results. 

[Mimispree]

Hi DarkOrchid12:

I had a Trigeminal Schwannoma, and I had telling symptoms for almost twenty years but I was never given an MRI.  I even had a CAT scan because of two white-out instances, but it didn't reveal the tumor.  Therefore, my tumor was 2.8 cm at diagnosis, but was very growing quickly and grew to 3.4 by my surgery date.  After my research, I was disappointed that I was not a candidate for CK or GK due to the size and placement of my tumor.  After reading this forum in addition to other Internet articles, I am convinced that if one is a candidate, CK or GK is preferable to microsurgery.  There are many recovery success stories to bolster your spirits.

I am also glad that you didn't have to wait for the tumor to cause you pain, because Trigeminal Neuralgia pain was excruciating, and I bet it is the cause of your headaches.  After my tumor was removed I never had that pain again.  So, I wish you the best of the best and look forward to reading another success story!

Be well,
Michelle