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Author Topic: Almost 4 Years Post Cyberknife and wondering if others have these issues  (Read 6294 times)

MaryBKAriz

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Almost 4 Years Post Cyberknife and wondering if others have these issues
« on: April 19, 2012, 11:22:21 pm »
Hi Everyone!

I am a voice from the past. This group was so helpful in getting me through my "Great Cyberknife Adventure". I am still glad I chose Cyberknife and most of the time my AN is not even near the forefront of my thought processes. The side effects I have from the tumor and treatment, as a whole, I have adapted well to. Life goes on.  :) I have been getting my post MRI's on schedule and have gotten over my claustrophobia (with the help of "happy pills") and my pre-MRI fear of them.

Now for the "but..." I do have periodic flares of the symptoms. I still have periodically stronger periods of imbalance. My hearing and distortion also vacillate. Proceeding and after my Cyberknife, I had bad bouts of balance issues. The nystagmus was very annoying. The hearing issues are perhaps the strangest. One of the reasons I was diagnosed was my word recognition issues. My hearing was okay but I missed many words resulting in my diagnosing MRI. After Cyberknife it stayed fairly similar to pre-treatment. Hearing aids would just amplify the distortion so I stayed away from them. A year later, after 2 hearing tests, both confirming that my word recognition increased greatly to the point hearing aids did help the loss of hearing. I wore them a lot. NOW my word recognition has again decreased (although I have no recent hearing tests, I KNOW the distortion has returned and the hearing aids cause amplified distortion. The pre-treatment tinnitus is the same story - increasing and decreasing with hearing distortion and loss. Does anyone else have this vacillation?

Now for my really weird question and perhaps symptoms of post Cyberknife treatment. Does anyone who had Cyberknife have these following issues? 1. I have the feeling of pressure where the carcass of my tumor is. 2. I also have small spots in numerous places on my scalp that are sensitive somewhere between itching and burning. About a year after being treated I started realizing it was there and then started wondering if it had to do with my treatment. There is no physical signs of skin issues. I just am really curious about this and can't find anything like this on the internet for any other conditions. This I can live with easily, it is just so plain weird!

I am making an appointment with an AN specialist Dr. at Barrow Neurological for my annual MRI and will confer with him about these oddities. Sadly my Dr. retired.   :(

Hoping to hear from "old" AN friends as well as some new ones who can shed light on any of this.

Take care,

Mary  8)

PS

I may post this same message on other areas of the forum so I can get feedback on my questions. For those who see the repetition, please excuse me!
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Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

ppearl214

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Re: Almost 4 Years Post Cyberknife and wondering if others have these issues
« Reply #1 on: April 20, 2012, 04:47:12 am »
Lordy I have missed you and at last year's symposium as well!   :-*  :-*  :-*  :-*

Mary, I have not had either of what you mention. Even after 6 yrs (yep.... that long now!), I have dime size hair thinning spots on my hairline but that is it.  Tinnitus acts up from time to time. You already know my balance is outta whack for other reasons.  Not run into what you are reporting. My "carcass" is done.

Hoping the other post-CK gang can answer but I've not run into it.

Please give Weldon a HUGE huggle from me... and keep some of it for yourself as well!

xo
Phyl
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"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

MaryBKAriz

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Re: Almost 4 Years Post Cyberknife and wondering if others have these issues
« Reply #2 on: April 20, 2012, 12:05:34 pm »
Hey Phyl!!!!!  :D

So very good to hear from you! I was sad I had to miss the symposium this year but do hope to go next time. Was it terrific? I do miss everyone. Life has gotten in my way. LOL. Challenging years since the AN but not because of the AN, thank goodness.

Please update me about the last symposium when you have a moment! Do they know where the next one will be?

Big, Big HUG to you!

Mary   8)
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Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

MaryBKAriz

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Re: Almost 4 Years Post Cyberknife and wondering if others have these issues
« Reply #3 on: April 21, 2012, 09:13:12 am »
I have an app't on June 1st with the doctor who replaced my AN doctor.  :D
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Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

Tumbleweed

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Re: Almost 4 Years Post Cyberknife and wondering if others have these issues
« Reply #4 on: April 21, 2012, 12:18:33 pm »
Hi, Mary:

I had the hearing distortion and vacillation in hearing ability whenever I ate sugar. I eat sugar so rarely that I could note a direct cause and effect. I don't know if that's what's behind your issues or not, but you might try avoiding eating sugar for a few weeks and see if your symptoms moderate. It's hard to do because sugar (including "evaporated cane juice") is in almost all processed foods.

Best wishes,
TW
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21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

MaryBKAriz

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Re: Almost 4 Years Post Cyberknife and wondering if others have these issues
« Reply #5 on: April 21, 2012, 06:20:34 pm »
Hi TW,

Thank you for the suggestion. That is such an interesting observation and I hadn't thought of that possible connection. Never too old to learn I say! My vacillation has been over longer periods of time (like months) but I will analyze if sugar was less common in my diet during my better times. Now I have an interesting reconstruction of time past to understand what my life patterns were during that time. Either way, it would not hurt to avoid sugar and see. Thanks! :-)

Mary  8)
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Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

leapyrtwins

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Re: Almost 4 Years Post Cyberknife and wondering if others have these issues
« Reply #6 on: April 22, 2012, 02:20:37 pm »
Hi, Mary.

Nice to see you back on the Forum  ;D

You've been missed!

Jan
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I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

MaryBKAriz

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Re: Almost 4 Years Post Cyberknife and wondering if others have these issues
« Reply #7 on: April 22, 2012, 03:14:18 pm »
Hi Jan!!!!!  :D

Hope you are doing well. So good to hear from you!! I've missed being in touch.

Mary  8)
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Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

foodsmarts

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Re: Almost 4 Years Post Cyberknife and wondering if others have these issues
« Reply #8 on: April 30, 2012, 09:13:39 pm »


Hi. I have the same weird stuff. Two and one-half years post cyberknife, I have the spots on my scalp - same as you, itching and burning. Some other spots are almost numb. I noticed it after about a year, same as you. You're the only one I've read of experiencing this. Also have the pressure around the top of my head - I can't pinpoint it to the area of the tumor, just generally around the top of the head. Like you, I can live with it -  but now that I know there's two of us, I feel more confident about reporting it to Dr. Chang.

I'll be interested in hearing what you learn after your next appointment.

Helen
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MaryBKAriz

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Re: Almost 4 Years Post Cyberknife and wondering if others have these issues
« Reply #9 on: May 01, 2012, 12:57:54 am »
Hi Helen,

I am so glad you wrote! I hope you don't think me too strange, but I am actually excited. I,too will be more confident mentioning this when I go in to see my new Dr. I wish Dr Kresl was still at the facility I go to. He did my cyberknife. I would also be curious about his reaction. When do you see or talk to Dr. Chang? He is such a renowned expert, I am really curious what he says, too. This is such a strange symptom. If you would like, you can show him my post. He did consult with me while I was still in the decision making mode. I also was wondering, did you have yours over 3 separate days? Mine was just one day and I wondered if the heavier one day dose did it. My treatment was in June 2008.

That you very much for answering my post! I would very much like to stay in touch.

Take care,

Mary.  8)

Logged
Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

MaryBKAriz

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Re: Almost 4 Years Post Cyberknife and wondering if others have these issues
« Reply #10 on: May 29, 2012, 08:24:36 pm »
My Mom who was under hospice care and I her Medical POA, passed away on Mother's Day. She was a wonderful mother - the best - and my dearest woman friend and I am also her executor and have so much to do I have no time to grieve. I haven't been able to post in a timely fashion due to this. Keep us in your thoughts.

Mary
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Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

ppearl214

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Re: Almost 4 Years Post Cyberknife and wondering if others have these issues
« Reply #11 on: May 30, 2012, 03:41:27 am »
Quote from: MaryBKAriz on May 29, 2012, 08:24:36 pm
My Mom who was under hospice care and I her Medical POA, passed away on Mother's Day. She was a wonderful mother - the best - and my dearest woman friend and I am also her executor and have so much to do I have no time to grieve. I haven't been able to post in a timely fashion due to this. Keep us in your thoughts.

Mary

Mary,
Oh, hun! I lost my dad 2 mos ago... and our dear Queenie Beanie, the AN healing Toot Queen 1 wk after dad. I was dad's POA and HCP... and hun, you know how to find me.  I am so sorry to hear of your loss but know that your mom was greated by my dad and Beanie and they are smiling down on us.... hoping/sending vibes that we feel ok, that we get through the ails that plague us.... and wrap us in their loving arms with warmth and love.

Hun, I am so sorry.
Phyl
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"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"
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