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Say Goodbye to My Little Friend (I Hope!!)
jrlaw10
Posted: Wednesday, February 10, 2010 8:35 PM
Joined: 2/8/2010
Posts: 34


First of all, thanks to all who post here as the information provided has been extremely helpful. I had a case of sudden hearing loss in the fall of 2006. It felt like my ear had a large build up of wax preventing hearing...the only problem being that there was no wax I guess it was apparent what happened next...I thought my ENT doc was covering his butt by ordering an MRI, but lo and behold, it was say hello to your new little friend. I measured about 5.5 mm, with moderate tinnitus and hearing loss in the human speech frequency. The telephone made the shift from the left AR ear to the right. I was referred to Dr. Fred Telischi who seems to be the go to guy in South Florida for AR's. He recommended an initial course of observation. The initial growth seemed slow..about 1 mm a year. We went to an 18 month MRI cycle only to find that the growth was accelerating, being 11 mm by the end of 2009. The hearing was decreasing as well. I am 55 years old and thought I had more time. With 2 kids in grad school and the need to take action now, I opted for the CK procedure. Surgery was out of the question. Dr. Telischi referred me to Dr. Markoe at the University of Miami Sylvester Cancer Center for the CK procedure. The folks there were absolutely wonderful. I felt like I was in a science fiction movie, though I confess I would rather have been watching on the screen! The information on this site convinced me that CK was the way to go. Today I finished my 3rd and final treatment. The side effects have been minimal...20 minutes of slight dizziness after the 1st session with a little fatigue the next day. After sessions 1 and 2 my tinnitus actually decreased but today it is a little louder and a little more ringy than usual. So...like others I now sit and wait hoping for the necrosis of my little friend and the preservation of my hearing. Like most others a little finality would be nice without that constant reminder "whispering" in my ear "here I am". So to everyone, thanks for the encouraging stories and information. I hope to share a future positive result in the time to come.
radsrus
Posted: Thursday, February 11, 2010 3:51 AM
Joined: 10/10/2008
Posts: 4435


WE look forward to hearing of results.Especially if positive.

 

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

 


jrlaw10
Posted: Thursday, February 11, 2010 1:01 PM
Joined: 2/8/2010
Posts: 34


Of course too early to tell anything, but "post-op" day one all seems fairly normal. Tinnitus back to pre-op level, hearing seems slightly better, sinuses have cleared up and no wooziness or headaches. The biggest difference is of course for the first time in years NOT having to think that sooner or later I must do something about the AN!!! It is certainly weird having had a medical procedure done and a week later it being like nothing happened at all!!
petgroomer
Posted: Friday, February 12, 2010 2:10 AM
Joined: 9/30/2009
Posts: 64


jrlaw10: It is so awesome to read posts such as yours. Glad to see all is on the up and up. Keep us posted!

5.60 cm X 4 cm vagal schwannoma and I'm losing control one millimetre at a time. Supposedly in-operable, but I beg to differ. www.allinonepetcare.com What I LOVE doing!
pbp214
Posted: Friday, February 12, 2010 4:18 AM
Joined: 10/10/2008
Posts: 193


jr....  congrats on your CK treatment and sending wellness wishes to you.  Am following along and you are right.... given time, feels like nothin' happened! :)

 

Well done!

Phyl



===============================================

1cm Acoustic Neuroma treated by CK at Beth Isreal Deaconess, Boston, MA 1st week of  April 2006


lalehjg
Posted: Friday, February 12, 2010 10:05 AM
Joined: 1/30/2010
Posts: 19


jr - congrats to you.  i too cannot wait to zap my little friend, and your story is encouraging!!   Hang in there and keep posting to let us know how things are going!

 

Laleh


AN Right side 12 mm x 5 mm diagnosed 1/25/10.  Researching options.
jrlaw10
Posted: Friday, February 12, 2010 5:06 PM
Joined: 2/8/2010
Posts: 34


Ahhhhh.....reality sets in! Two days after final treatment some symptoms have started to appear. Slight vertigo, slight headache, some facial tingling and some sinus pressure. I guess this is a sign that something happened after all!
radsrus
Posted: Saturday, February 13, 2010 6:17 AM
Joined: 10/10/2008
Posts: 4435


I really hate it when reality rears its ugly head! But hopefully you won't have much trouble.

 

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

 


Dr. J
Posted: Saturday, February 13, 2010 7:04 AM
Joined: 10/11/2008
Posts: 1070


At least you know that they hit the target!

 

Jerome J. Spunberg, M.D., FACR, FACRO
CyberKnife Center of Palm Beach
jspunberg@radiationoncologyinstitute.com
(561) 799-2828

 

Radiation Oncology Institute
10335 N. Military Trail, Suite C
Palm Beach Gardens, FL 33410
(561) 624-1717


jrlaw10
Posted: Saturday, February 13, 2010 5:29 PM
Joined: 2/8/2010
Posts: 34


Too true.......thanks!
jrlaw10
Posted: Monday, February 15, 2010 11:00 AM
Joined: 2/8/2010
Posts: 34


Post-CK day 5. For those who like to obsess over details, I am now 5 days post-CK. Headaches have stopped, vertigo mostly gone. Only symptoms remaining are a little sinus pressure behind the nose and a little (I guess what we call) wonkiness. Marked improvement from the weekend bouts of vertigo. Fingers crossed!
jrlaw10
Posted: Wednesday, February 24, 2010 1:23 PM
Joined: 2/8/2010
Posts: 34


Post-CK at 2 weeks report. I am trying not to get my hopes up too high, but I am extremely pleased at the results of the CK so far. I know it is atypical and probably won't last, but my tinnitis is reduced by about 1/2 of where it has been for the last 4 years and my hearing seems slightly improved. All in my head...maybe, but perception is 9/10's of the law! As for symptoms, the vertigo is gone and really all that I have to deal with is increased sinus pressure. Fingers crossed! I will update as the journey continues.
jrlaw10
Posted: Thursday, March 11, 2010 3:31 PM
Joined: 2/8/2010
Posts: 34


Post CK 4 weeks report: status quo! No new lingering effects have arisen. Still some sinus congestion, but the headaches and vertigo are totally gone. Hearing seems better with tinnitus diminished. Hoping all remains as it is! So far a better result than I could have hoped!
Dr. J
Posted: Thursday, March 11, 2010 7:12 PM
Joined: 10/11/2008
Posts: 1070


Great to hear!

 

Jerome J. Spunberg, M.D., FACR, FACRO
CyberKnife Center of Palm Beach
jspunberg@radiationoncologyinstitute.com
(561) 799-2828

 

Radiation Oncology Institute
10335 N. Military Trail, Suite C
Palm Beach Gardens, FL 33410
(561) 624-1717


Sunfish
Posted: Friday, March 12, 2010 11:15 AM
Joined: 2/17/2010
Posts: 39


jrlaw10 - I read this "thread" today, and it was very helpful and reassuring.  My treatment starts next week.  Glad to hear you're doing so well!
jrlaw10
Posted: Saturday, April 17, 2010 9:14 PM
Joined: 2/8/2010
Posts: 34


Two months post CK and (dare I say) it seems too good to be true. Continued (so far) good results. Tinnitus is way down and sometimes is not even noticeable. Hearing still slightly improved. Feeling of sinus congestion very minimal (but still present). Every now and then I get a 30 second bout of vertigo (once a week maximum), but no big deal. Sometimes I get about a one minute ringing in my affected ear, but after 5 years of constant tinnitus very manageable. Still 4 months until my first post-op MRI but I am cautiously optimistic! If all continues along this track (hopefully didn't jinx anything) the only question I will have is "why did I wait to get this done". Oh...and thanks to my insurance company for picking up the tab!!
candtlaw1
Posted: Wednesday, April 21, 2010 7:33 AM
Joined: 2/2/2009
Posts: 28


Yay for you jrlaw10! And yes, thank God for ins companies picking up the tabs! lol.... GL to you and may you continue to do well........

Cyndi
CK for 1cm AN 05/07

jrlaw10
Posted: Tuesday, June 08, 2010 8:10 PM
Joined: 2/8/2010
Posts: 34


Well maybe bad news is good news because certainly something is happening with my little friend. By the time I reached 3 mos post-CK it was like nothing had happened...no symptoms, improved hearing and reduced tinnitus. And then out of nowhere, I experienced vertigo and a headache. Some slight nausea. My intense immediate post CK sinus pressure returned. I guess the inevitable swelling had begun.....so I guess they hit the target after all! I grinned and bore it for about a week and then (when the headaches were too bothersome) started my steroid regimen. 2mg dexamethasone twice a day for a week and back to "normal". Now down to a one a day dose for a week. Dizziness and headaches gone, but unfortunately tinnitus elevated greatly. After this week down to one pill every other day. So..now its just the ringing and a little echo. Hopefully that calms down and I get back to the "hey I didn't think of this all day"!
pbp214
Posted: Wednesday, June 09, 2010 3:49 AM
Joined: 10/10/2008
Posts: 193


jrlaw.... you have done your homework.... you know you are in that potential "timeframe"....so, I'm sending good vibes your way that this is just a "hiccup" and will alleviate quick! Good vibes, good vibes... :) Phyl

===============================================

1cm Acoustic Neuroma treated by CK at Beth Isreal Deaconess, Boston, MA 1st week of  April 2006


radsrus
Posted: Wednesday, June 09, 2010 4:41 AM
Joined: 10/10/2008
Posts: 4435


No good vibes...might increase the tinnitus!

 

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

 


pbp214
Posted: Thursday, June 10, 2010 4:06 AM
Joined: 10/10/2008
Posts: 193


I wish I had my coffee in my system to come back with a proper response to this! Good "wishes".... Good "wishes"..... Ok, Dr. M... is that now properly sufficient to replace "good vibes"?

===============================================

1cm Acoustic Neuroma treated by CK at Beth Isreal Deaconess, Boston, MA 1st week of  April 2006


radsrus
Posted: Thursday, June 10, 2010 4:34 AM
Joined: 10/10/2008
Posts: 4435


That is MUCH better. I have enough coffee for both of us.

 

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

 


jrlaw10
Posted: Sunday, June 13, 2010 4:57 PM
Joined: 2/8/2010
Posts: 34


Well I will never hit 750 home runs but I must add that steroids are a wonderful thing. The magic of the little pills.......my "hiccup" is basically down to some slightly increased tinnitus with all other symptoms under control. Glad I knew this was coming!
pbp214
Posted: Monday, June 14, 2010 4:25 AM
Joined: 10/10/2008
Posts: 193


... and I bet your house is the cleanest in town, esp. when done at 2am! :) Glad to hear things are going ok now with help from the steroids. "Doing your homework" always pays off (ie: you knew in advance) and hoping things calm down for good now. GOOD VIBES!!!!!!! :) Phyl

===============================================

1cm Acoustic Neuroma treated by CK at Beth Isreal Deaconess, Boston, MA 1st week of  April 2006


jrlaw10
Posted: Wednesday, June 16, 2010 3:18 PM
Joined: 2/8/2010
Posts: 34


Oh geez...my research did NOT reveal that house cleaning was a side effect of CK! Don't tell my wife!!
jrlaw10
Posted: Wednesday, July 14, 2010 4:35 PM
Joined: 2/8/2010
Posts: 34


One month post-steroids. Back to what passes for normal! Hiccup seems to be over...back to feeling like I did one month post-CK (which was great). 6 weeks until first post-CK MRI....fingers crossed!
Dr. J
Posted: Thursday, July 15, 2010 4:28 AM
Joined: 10/11/2008
Posts: 1070


Ours too...

 

Jerome J. Spunberg, M.D., FACR, FACRO
CyberKnife Center of Palm Beach
jspunberg@radiationoncologyinstitute.com
(561) 799-2828

 

Radiation Oncology Institute
10335 N. Military Trail, Suite C
Palm Beach Gardens, FL 33410
(561) 624-1717


Barb7
Posted: Thursday, July 15, 2010 12:25 PM
Joined: 6/15/2010
Posts: 29


My fingers are crossed for you too. Your postings have really helped me alot. I had my first CK today.
jrlaw10
Posted: Friday, August 20, 2010 6:09 PM
Joined: 2/8/2010
Posts: 34


Been fairly easy since my last post with no change in symptoms and no side effects at all. Had my first post-CK today and will be going to my treating doctor next week. My greatest area of growth had been the transverse measurement (the path of least resistance!) which went from 5mm in 2006 to 12 mm in 2009. I had my brother (a radiologist) look at the scans. He confessed he had no idea of what my AN should look like at the phase. He did tell me that almost a year after my last scan the traverse was still at 12 mm. So no growth there. The AP measurement looked a little fatter from 7 mm to 8mm. So........of course I will wait and see what my treating physician (the one who knows what he is looking at) sees. Sounds good so far (I think!).
Barb7
Posted: Friday, August 20, 2010 7:17 PM
Joined: 6/15/2010
Posts: 29


Glad to hear you are feeling good. My Dr. at Sylvester wants an MRI and to see me in 6 weeks. Thats 6 weeks after CK. Seems real soon since everyone else seems to go months before having another MRI. Let us know if that baby has shrunk at all!!! I know mine will be the same.
jrlaw10
Posted: Friday, August 20, 2010 9:09 PM
Joined: 2/8/2010
Posts: 34


Well I had half that...I did the "see me" in 6 weeks, but my doctors (AN and Sylvester doc) both thought 6 months for the MRI. Not sure what 6 weeks would show? I'm not even sure what my 6 months results show!! By the way, glad your symptoms have calmed down.
radsrus
Posted: Saturday, August 21, 2010 5:13 AM
Joined: 10/10/2008
Posts: 4435


The 6 week visit is to simply check with you and see that you are doing okay, that all questions are answered, and to make sure that you have plans for an ongoing follow-up schedule. I consider it a very important visit since there are often questions that people did not think to ask earlier. We do ours at one month, but that is not important.

 

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

 


jrlaw10
Posted: Monday, August 23, 2010 10:48 AM
Joined: 2/8/2010
Posts: 34


I have now received the official radiology report from my 6 month post-CK MRI. The official radiologist report says the AN is exactly the same size as 10 months ago with no change. Since discovery I have averaged a 1.4 mm growth a year so I take this as good news! No signs of necrosis though. Question for the docs: would necrosis of the AN appear this early or is that something down the line? I will ask my treating doc on Wednesday and report back!
radsrus
Posted: Tuesday, August 24, 2010 3:16 AM
Joined: 10/10/2008
Posts: 4435


If we are going to see necrosis, it is around this time, but it means nothing if you don't see any evidence of it.

 

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

 


radsrus
Posted: Tuesday, August 24, 2010 3:16 AM
Joined: 10/10/2008
Posts: 4435


If we are going to see necrosis, it is around this time, but it means nothing if you don't see any evidence of it.

 

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

 


jrlaw10
Posted: Wednesday, August 25, 2010 4:41 PM
Joined: 2/8/2010
Posts: 34


Hi all. Great news today after my 6 months post-CK checkup. As reported previously, the AN was the same size as it was 10 months ago. The doctor did not seem particularly concerned as this may be something seen over the long term. The great news is that my hearing test showed a significant return of my hearing in my affected ear. Of course I am not at 100% (actually 64%) but a great unexpected result! I am going back in 2 weeks to see about a small hearing aid!
radsrus
Posted: Thursday, August 26, 2010 3:36 AM
Joined: 10/10/2008
Posts: 4435


This is the expected result, and of no concern.

 

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

 


Dr. J
Posted: Thursday, August 26, 2010 4:16 AM
Joined: 10/11/2008
Posts: 1070


That is a good result. No progression.

 

Jerome J. Spunberg, M.D., FACR, FACRO
CyberKnife Center of Palm Beach
jspunberg@radiationoncologyinstitute.com
(561) 799-2828

 

Radiation Oncology Institute
10335 N. Military Trail, Suite C
Palm Beach Gardens, FL 33410
(561) 624-1717


Barb7
Posted: Thursday, August 26, 2010 11:45 AM
Joined: 6/15/2010
Posts: 29


Glad your doctor visit was good! I, fortunately, have not had any hearing problems. It was good before and I don't feel like I had any loss since treatments. Had an MRI on Monday and see the doctor next Monday. Will post what happened although I'm sure there is nothing going on at this point. Stay well.
jrlaw10
Posted: Thursday, August 26, 2010 4:34 PM
Joined: 2/8/2010
Posts: 34


Thanks all...it seems many have not had hearing issues. "Sudden" hearing loss is how I discovered my little friend in the first place!
jrlaw10
Posted: Monday, November 01, 2010 5:56 PM
Joined: 2/8/2010
Posts: 34


Been a few months since I last posted. Nothing particularly of interest to report...I guess that's a good thing. Almost 9 months post-CK. No symptoms or side effects. Tinnitus still reduced and hearing still improved. I had some slight increased sinus pressure about a month ago but that just may be due to all the stuff floating around here in S. Florida (lots of allergy sufferers have really been complaining). So...I remain a BIG fan of the CK procedure if all stays as is. 3 months until my next MRI so hopefully no growth or shrinkage.
Barb7
Posted: Saturday, November 06, 2010 7:17 AM
Joined: 6/15/2010
Posts: 29


Been awhile since I posted last also. It's been 3 1/2 mos. since treatment for me. I actually feel pretty good. I will feel normal and out of the blue will get dizzy, off balance although it seems a little better. The tennitius is worse than it has ever been. I seem to be able to ingnore it. Hearing is fine. I am glad I did the CK when I did. I think it as a good choice for treatment also. I am to the point also that I don't even think about it too often. My next MRI is in Feb.
radsrus
Posted: Saturday, November 06, 2010 9:11 AM
Joined: 10/10/2008
Posts: 4435


Keep letting us know how you are doing

 

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

 


Dr. J
Posted: Monday, November 08, 2010 4:08 AM
Joined: 10/11/2008
Posts: 1070


Try not to think about it too much between MRI's. View them as signs along the highway!

 

Jerome J. Spunberg, M.D., FACR, FACRO
CyberKnife Center of Palm Beach
jspunberg@radiationoncologyinstitute.com
(561) 799-2828

 

Radiation Oncology Institute
10335 N. Military Trail, Suite C
Palm Beach Gardens, FL 33410
(561) 624-1717


JLR
Posted: Thursday, December 23, 2010 4:39 AM
Joined: 10/6/2010
Posts: 56


I am now 3 weeks post CK..The only symptom I seem to have is increased tinnitus. During the day its pretty loud, but bearable. But in the evening its so noisy.. Just a constant hissing . I suppose if this is the worst of the post ck symptoms then its ok..any feedback on this annoying noise? Thanks!


2.3 cm treated at Winthrop University Hospital Cyberknife Center, Mineola, NY 12/1,12/2,12/3/10 

JLR


radsrus
Posted: Thursday, December 23, 2010 5:55 AM
Joined: 10/10/2008
Posts: 4435


It tends to get less bothersome over time, but I am not sure whether it actually improves or people just learn to tune it out more.


 

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

 


PaulW
Posted: Thursday, December 23, 2010 1:01 PM
Joined: 7/30/2010
Posts: 19


Hi JLR,

I had tinnitus prior to treatment. After treatment at about 3 weeks my tinnitus got worse.Once it was so loud it was hard to think or even hear properly with my good ear.

Imagine half your head in a metal workshop, while the other half of your head is trying to watch TV. That was at its worst, and it lasted a few hours. That event happened 3 weeks after Cyberknife. My tinnitus has reduced considerably since the 3 week point.

I am now 5 months post Cyberknife, tinnitus is now very mild, and I don't even notice it.

At about 8 weeks, tinnitus had improved to the point where it didn't bother me any more.

Hang in there, if my experience is anything to go by, your tinnitus will get much better.

 



----------------------------------------------------------

10mm x 5mm x 5mm AN treated 27th July 2010

European Cyberknife Centre Munich. Dr Alexander Muacevic

 

 


JLR
Posted: Thursday, December 23, 2010 2:21 PM
Joined: 10/6/2010
Posts: 56


Hey Paul W.. Thanks so much. Appreciate your response and hopefully like yours -  mine will also quiet down.  Have a lovely holiday, Joan

2.3 cm treated at Winthrop University Hospital Cyberknife Center, Mineola, NY 12/1,12/2,12/3/10 

JLR


jrlaw10
Posted: Friday, December 24, 2010 3:10 PM
Joined: 2/8/2010
Posts: 34


I am 10 plus months post-CK. I had the increased tinnitus after my treatment. After a month or so the tinnitus went back to where it started. Now 10 months later it is further decreased and lower than at any time in the last 5 years since AN discovery!
JLR
Posted: Saturday, December 25, 2010 2:50 AM
Joined: 10/6/2010
Posts: 56


That's great. Now I know the noise levels will subside. Thanks for all the support and info.

2.3 cm treated at Winthrop University Hospital Cyberknife Center, Mineola, NY 12/1,12/2,12/3/10 

JLR


 

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