General Category > AN Issues

What to expect "after" Cyberknife

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mellowrama:
Hello Palace,

I finished Ck treatment sept 27, and I have also have a 22mm AN.  My symptoms prior to treatment were minimal, mainly numbness and tingling.  I'm very pleased with the treatment so far, but won't really know the outcome until MRI time...however, I'm very optimistic.

Meanwhile, it seems I have more symptoms.  Which from what I understand may be a good thing and to expect it.  As I understand, if the ck radiation is working the tumor swells from it and would potentially cause additional/new symptoms by pressing on nerves.  These type symptoms would be expected to be temporary, and go away once the tumor decreases in swelling and hopefully shows signs of necrosis...

I think everyone would be affected differently, if I remember correctly some people replied after ck that some of their symptoms diminished to a point immediately following treatment. 

I just take aspirin or tylenol for pain- and wine too.  I think taking something anti-inflammatory might be key...
melinda

Palace:
Melinda and other helpers,


So, what you are saying is with the swelling and possibly pushing on the nerves, those extra symptoms can go away after the swelling of the AN tumor goes down.  (sometime after the rad tx)  That is interesting that the nerves can be pushed on but, not be damaged for good that way if that is how it is.  I'm counting down the days for my CK.  I still think it is sad how long we have to wait for our tx.  Hopefully, not too much more happens to us while we wait for help.  Right now it feels like someone punched me in the jaw, so to speak.  I'm thinking of goingto get my teeth cleaned but, I don't feel like having my cheek stretched, the way it feels already.  I did go have some pre-skin cancer removed on my hands, got my estate planning in order and all the work-up appointments that go with getting to the surgery option stages. 

Thank you for your informative and interesting post.........hopefully it will help other people, too.



Take care,



Palace

ppearl214:
Hi Palace,

Melnda is correct.  Basically, the process is:

Once CK is performed (or any other forms of radio-surgery), the tumor does go through a swelling process before it implodes/experiences necrosis (DNA tumor death). Due to the swelling, there is some pressure on the hearing/balance nerve, which is expected.  Close monitoring via MRI is used to keep an eye on the swelling process. Antiinflammatories may be prescribed (such as Decadron or even OTC ibuprofen).  This will help to keep the swelling in check for a short time.  As the swelling diminishes, many of the symptoms may disappear or allieviate as well. 

Now, possibly around the 6-9 months post-treatment timeframe, the swelling may reoccur (not unusual), thus, many dr's prescribe ibuprofen (or a short term course of Decadron) to help ease the swelling.

Now 6 month post treatment, I can share that, for me, many of my pre-treatment symptoms are now either diminished or gone completely.  My balance is still a wee bit off (but, I have a brain stem complication called Chiari 1 Malformation that may be contributing to he balance issue). I can tell you my facial numbness is just about gone, my tinnitus has eased VERY much and only flares when I'm really, really tired or in a very loud setting (ie: noisy restaurant, etc). 

Please know, even as you note, that many of the pre-treatment symptoms may alleviate and/or disappear.  Like you, I was nervous about all of these things I had heard prior to my treatment. I do believe that many radio-surgery patients here will tell you that, to experience these post-treatment symptoms really are short term and if we can handle it for the short term, knowing that the long term result is tumor death, then heck, I'll deal with it short term. 

It really does get easy .... we're here to support you in all aspects as you prep for this treatment... and after treatment.  Just try to take a deep breath and know that we are all here for you to go through each step... just as everyone was here for me (and others) as we went through the process.

You're gonna be fine... truly!

Phyl

Palace:
Hello:


"Wow, Wheeeee........" I'm feeling better already, just hearing that.  If I thought some of this facial pain would subside later on.......I wouldn't be so down.  I can handle this if I thought it was short-term and would stay the same or get worse in the long run.  I have been through "WAY WORSE" with other surgeries as far as pain goes.  (although I'm always aware of one half of my face, gums and tongue having major trouble)  What you just wrote gives me such "hope" but, after reading all those other posts I was prepared for the realistic measures or worse.  By the way, I'm a realistic person and not into fantasy at all.   I'm almost excited you made me so happy reading that CK experience on a more positive note.  (the 6 mo. after mark)  I do hate to get my hopes up and be let down again because, I have been really sad since early June.  (when the symptoms got bad and I went for diagnosis)  All I have done for the past tweny years is have a major surgery per year, just about the truth.  I'm not up for much more but, I will "hang in there" if the chances are really better than I thought for HOPE and any improvement.  I thought I might go through all this and then end up with the doctor telling me I needed surgery later, anyway.  I can't get this off my mind; it is forever on me.  You people know how it is and a person that didn't have this can't honestly relate.  (just my honest opinion)

Bless your heart...........thank you soooooooooo much!




Palace

ppearl214:
Palace,

I'm glad our words helped.  There really is life after AN treatments, regardless if micro-surgery or radio-surgery.  Sure, we have our good days and our not-so-good days but life does and will go on.  We experience, we learn, we feel, we move right along.  The key to your situation (as well as for others that may be reading this that are pre-treatment) is..... feel comfortable in your treatment choice.  Know that you are doing the best option for you.  Know that many belong to the unique club and even though outcomes may be so diffeerent for so many folks, the one key factor is this... we are not alone.  You will see that once you become a "postie" (post-treatment), sensations the first month or so may seem awkward, but have faith that things will improve... as many do.

I will only speak for myself, but I know many here have shared the same with me... we remain committed to helping you and any other pre-treatment patients along with the process.  Our shoulders are firm, we own stock in facial tissue companies, we serve up watered down drinks... but most of all..... you are now part of a terrific "family". We are all family here and we welcome you with open arms.

Hang in there. :)

Phyl

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