CyberKnife Patient Support Group

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jimmi
Registered Member

Date Joined Jul 2008
Total Posts : 3

Posted 7/22/2008 11:17 AM (GMT -8)

I was treated end of Feb.08 for 1cm IAC AN.Started having hemifacial spasms along with swollen head feeling in may.Have been on decadron since,every time I try to taper symptoms come back.I am so fatigued I can barely function.Am extremly dizzy and sleep all the time.My sinus on the treated side also has bothered me(never had thi before CK).I called doctor and was told decadron shouldn't make me tired,and that fatigue this far out isn't from treatment.All I know is Im'frustrated as I hadn't had these problems before CK.I did have a mri in may when symptoms first appeared and it showed an to be stable.Im'thinking of getting second opinion,but hoping most of this is from steroids,and when Im'off of them I will feel better.Any thoughts would be greatly appreciated.Thanks!

radsrus
Registered Member

Date Joined Jul 2004
Total Posts : 7510

Posted 7/22/2008 1:51 PM (GMT -8)

THis could be at least partially related to steroids. Use of something like Lyrica might help the hemifacial spasm problems (very unusual).

Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org

Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102

jimmi
Registered Member

Date Joined Jul 2008
Total Posts : 3

Posted 7/23/2008 8:02 AM (GMT -8)

Thank you Dr.,My concern is if radiation damaged a nerve which is now causing spasms,and twitching on rt.side of face.If it did do these nerves usually heal over time?The steroids relieve the spasms but when I taper they come back,I have also tried neurontin with no result.My neurosurgeons assistant believes its from radiation,and had me contact them,I spoke to drs.nurse who told me to contact neurosurgeon.It seems cyberknife doc has never expierienced any complications such as this and really has no answers or interest.I believe there must be some inflammation or swelling,or why else would the steroids work? I know cyberknife is extremly accurate,but isn't there still a chance of healthy tissues being affected which might cause these problems?I go back in Aug.to see neurosurgeon and for mri,I will not be going back to cyberknife docs,as their follow up seems to be lacking.
I must believe with all the ANs that have been treated with CK,theres someone who has had these same complications,any help would be appreciated,Thankyou!

radsrus
Registered Member

Date Joined Jul 2004
Total Posts : 7510

Posted 7/23/2008 12:56 PM (GMT -8)

The symptoms you are describing are rare but not unheard of. They are probably from facial nerve irritation or injury. I would expect it to resolve over time. I think it would be worth trying tegretol or Lyrica or another similar agent rather than remaining on steroids long term. But that decision has to be made by the local people.

jimmi
Registered Member

Date Joined Jul 2008
Total Posts : 3

Posted 7/24/2008 11:39 AM (GMT -8)

Thankyou for your reply,Iwill look into lyrica,and its good to know this is not unheard of,its just bothersom and hopefully a minor set back on road to recovery,once again thankyou!

radsrus
Registered Member

Date Joined Jul 2004
Total Posts : 7510

Posted 7/25/2008 10:38 PM (GMT -8)

Most things of this sort go away with time. We will just have to see

pbp214
Registered Member

Date Joined Feb 2006
Total Posts : 624

Posted 7/28/2008 1:08 PM (GMT -8)

hi jimmi,

I don't know if I can be of help, but will try. Like you, I had CK on my 1cm left IAC AN. This was done just over 2 yrs ago. There are the side affects that we run into (but not often) that definately throw us off. Like you (between 3-9 mos), I had dry eye (totally shocked me as I had heard of it for microsurgical but not radio-surgical patients). I had the funky tinnitus (crickets chirping is how its been described). I had a wonderful flushing/warmth to my face approx 2 mos later, etc etc etc. As Dr. Medbery noted... many do subside over time. In my case, many have. I worked with my radio-onc dr to make sure he was fully aware of pangs and twinges that I was experiencing... and with my PCP to have her take control of all symptoms and meds that were prescribed to help.

As we know, "individual results may vary", but I have to agree with Dr. M... many things do subside over time... its dealing with them at the time that is the pain in the petunia. I hope the meds help (btw, Decacrap, as I call it, turned me into an insomniac... not fatigue... but Neurontin will make you tired/fatique... just FYI).

Hang in there.... hoping tomorrow is better than today.
Phyl

Acoustic Neuroma, 1cm x 9mm x 4mm. CK at Beth Israel Hospital/Boston MA April 3-7, 2006

radsrus
Registered Member

Date Joined Jul 2004
Total Posts : 7510

Posted 7/28/2008 1:21 PM (GMT -8)

Just where is the petunia located? I may have some pain there myself.

Sheryl
Registered Member

Date Joined Jan 2005
Total Posts : 181

Posted 7/28/2008 5:04 PM (GMT -8)

Couldn't find it listed in "Stedman's"!! Wherever - bet it could be treated with CK!!!
Sheryl

pbp214
Registered Member

Date Joined Feb 2006
Total Posts : 624

Posted 7/29/2008 3:53 AM (GMT -8)

*groans*

sorry jimmi for the hijack.... hang in there!
Phyl

Acoustic Neuroma, 1cm x 9mm x 4mm. CK at Beth Israel Hospital/Boston MA April 3-7, 2006

candtlaw
Registered Member

Date Joined Mar 2007
Total Posts : 203

Posted 9/5/2008 5:59 AM (GMT -8)

hoping today is bringing you a better day...... in my case these things just took time to go away. Gl to you.. hang in ther Jimmi

Cyndi
post CK 04/30/07 for left AN 10 x 7 x 6

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