After 12 years it back

[paula jean]

  Hello everyone,
This site is a God send.
As I continue to research my options, I'm getting more and more confused. I had middle fossa at the HEC in 1999 to remove a 1cm AN. I gave into an MRI last year (shame on me for not going sooner) and discovered an AN at 3mm. The HEC did not know at the time if it was scar tissue, fat in my head or a regrowth. This year I had another MRI which confirmed regrowth, it is now at 6mm, doubled in size in one year. Wonderful! So, I'm exploring all options and I'm totally confused regarding gamma vs cyber. I think I've decided surgery is out. Been there, done that, and if he left some in on purpose, I don't want that coming off at this point.

Why would anyone put themselves through gk? I've read many gk stories, some of them horror stories. It appears that the results are the same with CK, just no "halo" bolted to your skull (yuck) and with CK its seems to be a series of painless treatments. Are there any other good sources of information? I've read so much, and the more I read the more confused I get. However, I just found out about this a few weeks ago, and I'm still in the anger, mad, depressed, why me phase. I need to stop the emotion, and get on with a decision. I know I can W & W, but it is highly likely that we will be buying our own medical insurance in Q1 of 2011 and I feel the urgency to get this done while we still have medical coverage. Any links to good data would be so helpful. 

[ppearl214]

Why would anyone put themselves through gk? I've read many gk stories, some of them horror stories. It appears that the results are the same with CK, just no "halo" bolted to your skull (yuck) and with CK its seems to be a series of painless treatments. Are there any other good sources of information? I've read so much, and the more I read the more confused I get. However, I just found out about this a few weeks ago, and I'm still in the anger, mad, depressed, why me phase. I need to stop the emotion, and get on with a decision. I know I can W & W, but it is highly likely that we will be buying our own medical insurance in Q1 of 2011 and I feel the urgency to get this done while we still have medical coverage. Any links to good data would be so helpful.  

Hi Paula Jean and welcome. I'm sorry to hear about the regrowth and yes.... as AN'ers, we need to keep on top of having timely MRI's down the road to help make sure we stay on top of things.  I'm sorry to hear of your regrowth (as we have heard of many recently) and send wellness wishes your way.

Regarding your question above.... here on the forums, we completely respect anyone's decision (should they have one) when it comes to choosing a treatment option.  Regardless of what is decided by an AN'er for their treatment option, we know each decision is highly personal. Many of us that choose radiation (regardless if GK, CK, FSR, Trilogy, etc) have our own personal reasons for making such a decision. Some may note that they are scared of the "invasive" process.  Some may note that hearing preservation is key and with some of the surgical processes, there is a higher change of losing what hearing they have.  Some may note that they'd rather go non-invasive vs. invasive due to possible surgical side affects (ie: CSF leaks, facial issues, etc).

Yet, the same can be said for those that do have surgery. Some may note "if it don't belong, get it out of my head". Some may not want to deal with the waiting game of radiation (ie: 2-3 yrs to wait for confirmation that the AN has stopped doing its thing).  Some have no fear of the surgical process and go for it.

If you want to learn more about why some folks choose radiation... here is good link:  www.cyberknife.com.   Dr's on that forum volunteer their time to answer patient questions. The docs on the forums perform radio treatments such as CK and GK, so they are very well versed on radio protocols. If you have questions specific to radiation treatments for AN's... I would take a peek there. There is a subforum dedicated to AN's and you can "lurk" the posts there.  

There are a million to one reasons why AN'ers chose what treatment  option they want to pursue. Regardless of what anyone chooses, we respect it, don't question it and show our total support.

The same is for you  We are here for you as you go through this again. There are many here that had/have regrowths (ie: PattyUT, jcinma, etc) and we cheer them on BIG time, just as we will do for you.

I can imagine the anger you feel right now and please know that we are here to help.  

I know easier said then done, but please try to hang in there... know you can count on us for the support you need... as many here DO wear the same shoes that you currently wear.  

Phyl

[Sue]

Oh my goodness!  I'm sorry that you think GK is a "horror story"!!  As with all things medical, everyone has a different story to tell.  I had GK, and at that time that was my only choice in the Portland/Vancouver (OR/WA) area.  Now there is Cyberknife. 

I believe CK is probably a little gentler on the system than GK.  Probably because you will go in for several sessions and with GK, it's a one shot deal.  I was 60 years old at the time of my treatment and I will admit that the first week was tough for me.  That was mostly because of the steroids that kept me from sleeping.  I had a great team at Providence and the meds I received dulled the whole head frame experience so that it wasn't much of an issue for me, when it was all said and done.  A few people experienced pain with getting the head frame on, but I don't think that's the norm. 

I didn't figure that killing a tumor growing inside my skull was going to be a walk in the park.  They could have sawed a hole in my skull and reached in and dug around and extracted it bit by bit that way,  or I could have it "nuked" and gone home the same day.  I'm glad my doctor's recommended GK for me.  My GK experience is now a distant memory although most of those memories were swept away with that little white pill that they gave me. 

Having defended my medical choice, I will now say that had I had to do it over again and CK was an option, I surely would have looked into that to see which one would have been better suited to me.  I wish I could spout the statistics like some on here can...CK vs GK with accuracy, etc, but I can't.  But it's on this forum somewhere, I do believe!!

Best of luck to you,

Sue in Vancouver, USA

[sgerrard]

Hi Paula,

Based on numerous cases on this forum, and 3 or 4 people I have met in person, I would say that most of the time the GK head clamp is no big deal. Occasionally it does cause people some trouble, but we are talking a month or two of discomfort, not something permanent.

I tend to agree that other things being equal, CK is a gentler way to accomplish the same thing GK does, and given the opportunity, I would pick CK - in fact I did. But GK delivers excellent results too. If for some reason I had not been able to have CK, I would have been happy to do GK instead.
 
3 months or so after, CK and GK patients are in the same boat, with their treatment days a distant memory, and a zapped AN in their head doing some swelling things and then shutting down for good.

Regrowth of our AN is the one thing none of us want, and it is not very common, so I totally understand the "why me" feeling. I would not be a happy camper either. But it is small, and easily treated, so you just have to  jump over this one additional hurdle. You can do it.

Steve

[Shelley G]

So sorry to hear that it's back- but don't let it get you down.  I had GK- the CK wasn't even an option for me- not available anywhere that I could get to- the halo gave a bit of an ouch as they screwed it in, but then the painkillers kicked in.  I had to drive 6 hours for my surgery, so it would have been a huge inconvenience to have been there for a series of treatments- it was one long day- back to the hotel that night and then in the car for the drive home. I will probably never see the surgeon again- I see a neurosurgeon 2 1/2 hours from home- he will order the MRI and keep tabs and send a report to the GK surgeon. I must say that other than a headache and sensitive spots from the screws, I had no major problems- although I now have tinnitus, which I did not have prior to surgery.