What to expect "after" Cyberknife

[Palace]

Hi Folks:


I was laying in bed just now and got up to post this since my facial and tongue pain seems to be getting even worse.  Here is my question and don't fear, I don't expect you to answer it like a doctor.  Will my  tongue numbness and facial pain subside after CK?  (again 22 mm AN)  I want to know if this is going to be a permanent way of life for me, now.  In other words, is the nerve damage done.  Is this it?  Is this what I have to live with or worse if the face drops?  The pain is making my life so I can't concentrate on anything or enjoy much at all.  Does this CK take the inside of the tumor out (turning it to a mush) and leaving the core which hopefully shinks it and stops pressing on the 8th C. nerve.  Will it take those symptoms away once I have the TX?  I'm told it take the three months for the cells to die.  That will put me at the 1st of March, 2007.  Is that how it is or what do I expect?  Will I regain my face back the way it used to be?  (once the CK is over and/or does the three months have to pass before that happens if it is able to?  Does anyone know the answer?  I have eye twitches.  So, the loud noises in the ear will stay because, they will kill off the rest of my hearing in the right ear with the radiation and does the fullness stay too?  PLEASE help with these if you can.  These questions are weighing on me 24/7 and you can't get away from the pain.  What helps for this type of AN pain?  Can anyone follow all those questions and maybe have some answers.  I'm desperate for my feedback on these questions as, they are so important to me.  I know you have your own stresses and problems but, this one is first and formost for me now.


I think we should have some fun!  Let's have a Halloween party and come in costume, then meet.


I'm fading out on my timed-release Ambien..........(about to escape the facial pain)...........Nite, Palace

[ppearl214]

Hi Palace,

Let's see if I can help at all.

First, a terrific website to ask the Dr's that volunteer their time to answer CK questions to us patients is:
http://www.cyberknifesupport.org/forum/

They certainly helped me pre- and post-treatment. 

2nd, having had my CK 6 mos ago (wow! time flies!), I can share that certain facial numbness that I have had (for me) have either remained or eased a bit.  Necrosis (tumor DNA death) does take longer than 3 mos..... it can take up to 1-2 yrs.  Yes, it is a slow process but.... with MRI's performed over that time period, indicators of necrosis will begin to show (I know Shoegirl had her CK last December, just had her MRI and signs of necrosis have commenced). 

To me, this is all the tricky part of having any form of radio-surgery... the waiting.  Now, for me, I sat back and thought about micro-surgery and radio-surgery.  I knew the toughest part was the waiting game. I can tell you that, now 6 months post treatment, many of of pre-treatment symptoms are now either gone or have eased.  The hardest part is knowing if you have the mental strength to endure the time frame it takes for necrosis to occur. I've discussed this concern with many other radio-surgery patients that I communicate on this site and we all rally together to help during the watiing game.

Your facial/tongue issue may ease, any other symptoms may as well... each individual is going to have individual results.  I had ear fullness which has now alleviated (sometimes when weather fronts move in, I feel some of the fullness, but not nearly as bad as before).  Loud noises, such as noisy restaurants and loud Harley motorcycle engines still bother me as the 8th cranial/vestibular nerve is still sensitive.  No pain is felt by me post-treatment.

Please take a peek at the CK Patient support board link that I note above. So many of your questions are answered there under the "brain" section.  Many answers, not just for CK patients, but for all radio-patients as well.

Hang in there and please please try to rest. All will be fine!

Phyl

[Palace]

Phy & All,


That is a terrific website for CK patients.  That is kind of you to post long and informative data with the link!

The Aspirin worked for me for a few days and yes, my gums and teeth feel just as numb as the rest of the right side of my face.  I tried Motrin yesterday and it didn't really help.  I don't want to take the really hard stuff as, it seems from what I'm learning.........all this isn't going to *just* go away now or much after TX, if at all.  Hummmmm, what to take for the pain?  I was in horrible pain for months on end with different surgeries I had but, I kept telling myself it would go away someday.  That thought helped just a small amount.  I have had a few surgeries with those pins that stick out of my foot for a couple of months.  I've had all kind of torture connected with surgeries.  I'm just wondering what to take on a daily basis right now for this extreme discomfort or whatever we wish to call it.  The surgeon said he could give me something for pain but, I refused it as I figured it was the old Vicodin routine.  I've been that route many a time and as little as possible.  I suppose no OTC will help with the facial pain.  If anyone has any experience on that one I would appreciate it.

OK, thanks for all the help.........you all have been great.....



Palace

[Palace]

Hello:


You people seem to still have a "sense of humor" so, I'm going for *the cold one* as I have tried just about everything else.  How can we treat the facial situation this way, if it works?  I'm having a late lunch and trying a glass of wine to see if it helps at all.  (you all might like to know it is 13.5% alcohol and yes, I'm of age)  I hope this works.  It is the weekend now........almost........so, what the heck! 



Cheers,



Palace

[Palace]

PS

The cold one helped by 50% (on the facial pain problem) but, the problem is.......it will wear off soon.  Again, fishing and a cold one was recommended by this forum.  Thank you for the idea even though it is temporary...............could be a nice habit.   



Palace

[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

[Palace]

Phyl,


Do you think that you had the better luck with the lesser facial pain because, your AN was not huge?

Forgive me if my questions sound redundant as, I'm still a "Newbie."

You sound like you are enjoying life after AN and I'm happy for you.



Regards,



Pal

[ppearl214]

Hi Palace

Interesting question. I did not experience facial "pain" but facial numbness. I do know that my trigeminal (facial) nerve did take a hint of a hit of radiation as I ran into dry eye (easily workable with special drops/ointments such as OTC GenTeal and Systane, etc) and only experienced that for approx 1 month... all gone now.  My facial numbess is just about gone now (every now and then, it talks back to me, but I have to admit... if it does now 1-2x/month, compared to the daily I had before, then I think I'm in much better shape now!).

So, I cannot reply as to "pain"... and hoping anyone else here that has experienced facial "pain" can chime in.  Another suggestion... go the the Cyberknife Patient Support Board (http://www.cyberknifesupport.org/forum/) and ask folks and the dr's there about facial "pain". I bet you'd get a lot of responses there.  Many of us are active on that board as well and I have a feeling Drs Medbery and Spunberg could give terrific answers on this subject.  Just a suggestion.

Hope that helps, even if just a little, Palace.  I am enjoying life as I refuse to let this get the best of me.....and no worries about being a "newbie"... we were all newbies at some point. Trust me... pre-treatment, I had everyone in circles with all of my questions.  It's great to find forums such as this to reach out to others, especially those that have "been there, done that" and can help with answers.

Phyl

Phyl,


Do you think that you had the better luck with the lesser facial pain because, your AN was not huge?

Forgive me if my questions sound redundant as, I'm still a "Newbie."

You sound like you are enjoying life after AN and I'm happy for you.



Regards,



Pal

[Bena]

What if you had a horrible reaction to decadron and afraid to take it again? i had 2 ER visits weakness sleeplessness wild mood swings many other side effects. even a scary blood sugar spike not even diabetic. i had a bad time weaning off no way I can go back on. doc says thats my only otion. ibuprofin does not help. spending days in bed terrified lately.

[PaulW]

Hi Bena,
Steroid prescriptions after radiation is interesting.
In the US steroids particularly decadron are commonly prescribed after radiation to reduce symptoms.

I was treated in Europe where the use of steroids after radiation is not so common.
There are doctors that believe that the use of steroids after radiation does not alter the final outcome.
So while they might provide temporary relief of the symptoms there is no conclusive evidence that it will change your long term outcome.

Steroids, particularly decadron is a very powerful drug with multiple side effects.
In your situation the side effects may outweigh the possible benefits.

I would consult with your doctor, and also ask about steroid use in Europe after radiosurgery or lack of.
Also ask about long term outcomes for institutions that use Steroids or don't use steroids for AN's
I don't think there are any published studies yet unfortunately. But doctors are working on this.

Certainly worth getting further professional medical advice, and I think asking the doctor some hard questions around evidence that steroids improve long term outcomes for AN's would be worth doing.

[shilu]

Hi,
I would like to know how you are doing after cyberknife treament. I am also having a .6mm tumor and thinking of cyberknife treatment option. Please advise