ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: Sam on December 15, 2006, 01:50:30 pm
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Does anyone know how long I will have to wait after Gammaknife treatment before I can go back to eating the road up running?
I need to get out and start my PT again, I hate having to take it easy!
Sam
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Sam
In the same shoes here. I know each of us deal with our post-treatment in such individual ways. I tried to go back to the gym to work out with my trainer (who happens to be a physical therapist as well) 1 month post CK... didn't work for me. I've been on hiatus for a while now for my gym workouts as other complications now have me side-lined (and feeling like a beached whale). I'm a former power walker (as of 3 yrs ago, that use to do 4 miles in 47 minutes) and now... well, I walk with a cane and miss my work outs terribly. I try to do some walking now, without my cane, when I walk my dog. She pulls me this way and that way (basically, she walks me instead of me walking her), so it allows me to work on my balance, as well as trying to keep my legs strong. Cardio is an issue for me as I'm now running into exertional headaches, which I'm currently being tested (which we also feel has nothing to do wtih the CK treatment).
I know folks, such as Mark and CrazyKat (Paul) work out and are doing fabulous. I'll lurk this thread to see what others say.
Hang in there!
Phyl
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I was exercising at least 3 or 4 times a week - running, gym, etc. before AN dx. BAM! When I found out about AN, I lost all my desire to work out and have not returned to the level since. Not sure why. It's probably a combination of energy and motivation. I have been on low cholesterol diet before CK and been maintaining it however.
Someday, I will return to my workout level. Hmmmm... I should add that to the Santa wish list in Phyl's post. I think I will.
Mary
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Sam,
Each of us and our recovery is different, for sure...you need to listen to your own body but I also know it's helpful to learn about other people's benchmarks. I'm not young, not old (58) and was active before GK (June 2006) and continue to be so. I was and am a runner, hiker, biker and skier. Four days after I flew back from my GK treatment, I climbed a 13,800 foot peak here in Colorado with my husband. I was definitely tired and definitely exhilirated!!! For about 2 months after the GK treatment, I tired more easily and required more rest but none of this prevented me from doing the active things I wanted to do. Some of this for me, I think, was mind over matter and some of it was being fortunate that my body was not seriously adversely affected. I count myself lucky in so many ways and hope to continue down that path. My very best wishes to you as you sort this all out. When the time is right you will know it...I think that pushing yourself can be a good thing if that's your mind set. Take care and good luck!
Ginny
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Ginny,
thank you for sharing that and I do find it ti be extremely helpful in knowing that you use the power of "mind over body"... it truly does make a difference.
You note the fatigue factor. As you may know, we are doing a survey here for Dr. Medbery who is helping us to understand why some experience certain levels of fatigues post radio-surgery (and other forms of AN treatment). If this is of interest to you, please email me here with your internet address and I'll send the survey along. It's a small MS Word doc (37k), less than 2 minutes to complete and you email it directly to Dr. Medbery.
If this is of interest to you, please let me know. your inputs would be most helpful, especially where you note your current levels of activity.
I hope you are enjoying your holiday season.
Phyl
Sam,
Each of us and our recovery is different, for sure...you need to listen to your own body but I also know it's helpful to learn about other people's benchmarks. I'm not young, not old (58) and was active before GK (June 2006) and continue to be so. I was and am a runner, hiker, biker and skier. Four days after I flew back from my GK treatment, I climbed a 13,800 foot peak here in Colorado with my husband. I was definitely tired and definitely exhilirated!!! For about 2 months after the GK treatment, I tired more easily and required more rest but none of this prevented me from doing the active things I wanted to do. Some of this for me, I think, was mind over matter and some of it was being fortunate that my body was not seriously adversely affected. I count myself lucky in so many ways and hope to continue down that path. My very best wishes to you as you sort this all out. When the time is right you will know it...I think that pushing yourself can be a good thing if that's your mind set. Take care and good luck!
Ginny
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I thought I could throw my .02 on this topic since I am as of today 2 weeks post CK.
I went back to my normal 1.5 hour hot yoga class, 4 days after my treatment was complete. I'm not talking about a few minutes lying around a stretching, I'm tlaking about 1.5 hours of strenuous hot 99 degree room yoga. I am determined to work through my balance issues as as soon as I can. It is interesting to me that when I have a bad day, with balance problems and slight disorintation, if I force myself to go to my yoga class, I feel 110% better aftewards. I think it has to do with forcing my head through the "wonky" mode back to normal.
One funny thing happened on Monday night. I was in a fairly strenuous pose and I hear my instructer saying "weeee.." and could not undertand why. Well a few milliseconds later I knew why, I was falling over backwards and didn't even perceive it!! I did manage to catch myself before falling completly down though!!
Anyway, I feel so much better when I go into my "by sheer force of will" mode and work my way through the fatigue or just take a 15 min cat nap and then force my way through.
Just my experience.
Jim
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Sam,
I know we are all different but I went to meetings the night after my GK and flew to Colorado the next day for 5 days of meetings. Not supposed to wash hair for a few days due to the wounds left from from frame placement and I stayed out of the pool for about a week because of healing time from frame placement also. It worked out well for me to be out of town for a few days. I felt that I should not road bike for several months as I felt dizzy a few times but I ran and swam as always and continue to do so. Again, I know everyone is different but I kept waiting on something to happen that never did and I just went on as usual. I truly feel that the GK was the best thing since sliced bread for me and cannot imagine the differences that there must be when surgery is required. I am 52 and 18 months out from 11mm AN, I am truly blessed.
Best of luck and please ask questions anytime!!!!!
Michael
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Here's another question,
Does anyone know if yo can dye your hair before having GK? I want to color my hair but my GK is scheduled for the 27th. Thanks,
Lana
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Hi Lana,
Licensed cosmetologist here....
Yes, it is perfectly safe to do hair color prior to your treatment... and that is when I (personally) would recommend it. I'm not sure what kind you do (off-the-scalp color, such as foils, etc vs. all over 1-process). I would then hold off for a while post-treatment as certain areas of the scalp may be a bit sensitive (esp. to hair color chemicals) post-treatment.
Had my color (ooops, did I just admit that! :o) 1-wk prior to my CK to play it safe, not knowing how soon after I could do so.
I hope this helps.
Phyl
Here's another question,
 Does anyone know if yo can dye your hair before having GK? I want to color my hair but my GK is scheduled for the 27th. Thanks,
Lana
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Thanks Phyl!
That helps a lot! I need to hide those nasty grays! I will definately try to get it done asap. I don't want to have to wait. I use the all over process. I knew I wouldn't be able to do it after GK fow awhile but I just wanted to make sure I could before. Thanks for your help and have a Merry Christmas!
Lana
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Hi Lana,
Hair color and high-Lite. I did them before and after CK. No problem whatsoever!! So, go for it. You will look great and feel much better all done up. I know I do ;-).
Happy holidays.
Mary
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Hi Lana,
Not that I want to scare you but I had my hair done 5 weeks post CK (also single process) and burnt my scalp pretty badly. Posted the question on cyberknife site and guess what - scalp might be a bit sensitive and it is better to use some sort of barrier btw. the scalp and color ie. cap or foil. It was also suggestion given by our Phyl. Another words like with everything AN - you either have no issues or you do. But better safe than sorry. Look up docs answer to Andy's mom (thats me on cyber page) about a week ago.
Happy Holidays and good luck on 27th. We will keep you in our prayers.
Flier58/Andy's mom
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Hi Lana,
Flier58 and Phyl are right. Better be safe. With GK I think you will have some small areas on the skull that may be affected. I will get it done before and wait for a little after treatment. I waited about one month before I had color and high lite.
Will be thinking about you on the 27th. Please do let me know if there is anything I can do to help you. I am in town and will be glad to help out. Send me a personal mail if you'd like.
Mary
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Today was a good day. When I was diagnosed in September, I was informed by my ENT to STOP running completely. In November I was informed by my Neurosurgeon that I should resume light Physical activities Meaning short jogs, (not happy about that) about 2-3 times a week. After my GK I was told to resume with my Physical activities 48hours after the GK. So I gave it 2 good weeks for recovery time and decided today to resume. Before I stopped running I was Running 1.5 miles in 13:00 min., best time was 12:00 min.(in July). After a short break from running, I ran the 1.5 today "with a cold" in 13:54. I was pleased, considering what I have been through in 2006. I have a new goal now, and this will be my New Years resolution. By this time in 2007 I am going to run the 1.5 in 10:00 min. flat. My tumor might not like it, but it does not matter, it WILL BE DEAD!
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Sam,
You gave me such inspiration. I think I will venture out tomorrow morning to re-start my workout routine again. It's been a while. I agree that it is more mental than physical. I need to be psych'ed up.
So all of you (Phyl, Mark, Sam, ...) , please please please keep your fingers and toes crossed for me.
*I think I can I think I can I think I can... *
Mary
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Mary,
Start out slow, find your pace, mark your place, and the next day try to go farther then you did the day before, each time you go a little farther, mark it, and keep building yourself up. And I do not think you can, I KNOW YOU CAN! Good luck!
Sam
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The way I have been thinking about it is this. You may feel like cr** but your AN must feel 100 time worse. He just got hit with hundreds of shots of radiation!!!
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AMEN!!!!!!!!!!!
But I am going to feel better after My AN's Death!!!!!!!!!!!!!!!!!!!!!!!
And I get that 1.5 in 10 min.
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They're all dying folks... yeppers... they are all definately dying! :)
*does AN death dance around room.... trips over dog*
ow. :D
Phyl
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Sound Good to me!!!!!!!!!!!!! ;) ;D
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I DID IT!!! Went for a jog for 45 minutes -- not sure the distance but at least a start. Alex (my soon-to-be 9 year old) rode his bike with me. The sun was just rising from behind the hills. Air was crisp. It felt great! Thanks for all the encouraging words. Sam - you were right and you knew it all along ;D. Now, let's see if I can continue the routine... That will be the test!
Mary
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Mary,
That is Great, Now just use the thought "I know I can" and You will, Good luck!
Sam
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After the morning jog, I even took Alex and two of his friends to San Diego Zoo. I walked all over for 3 hours with 3 kids (6,7,8 year olds) and was not even tired! I think exercise does help your body feel better. Will try to continue tomorrow morning for another jog.
Thanks Sam, Jim, Phyl...
*chanting I know I can I know I can I know I can...* ;)
Mary
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more like "I KNOW I can, I KNOW I can......"
I am SO dang proud of you Mary! My new inspiration and SO thrilled how you are tackling this head on (sorry for the pun)......
What a way to start 2007! GREAT job!
Phyl
Sam,
You gave me such inspiration. I think I will venture out tomorrow morning to re-start my workout routine again. It's been a while. I agree that it is more mental than physical. I need to be psych'ed up.
So all of you (Phyl, Mark, Sam, ...) , please please please keep your fingers and toes crossed for me.
*I think I can I think I can I think I can... *
Mary
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Sam and Phyl, Thanks for your confidence in me. I went running for 3 miles yesterday!!
Mary
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Mary,
That is Great, but don't over do it. Just work yourself into it slowly. I ran today, and made my 1.5 in 13:08 min. I have to work the next 4 days beginning tomorrow and will not run on my work days. On my next 4 days off I will run all 4 days. I usually time myself the first day of running, and run the next two days (untimed) in sprint formation, then on the last day I will time myself again and try to beat my time. I was doing this when I found my tumor. My doctor said that I would have never found it until it was too late if I had not been running like I do. Dr. Guthrie said that I was getting my blood pressure up just enough for the blood to flow through the tumor to trigger symptoms. I can already tell the diffrence since my treatment. I do not get dizzy during my run/sprint. Imagine that, I guess I looked like an intoxicated runner going down the road with everyone just wandering if I would fall out in the road or in the ditch!
Take it easy, and do what feels comfortable! You will meet your goal ! But, you don't have a deadline to meet it tomorrow.
Take care
Sam
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Hi Sam,
Great advice. I think I will take New Year Day off from running. May be instead of daily, I will do 3 - 4 times a week to pace myself. I was quite out of breath towards the last part of the run yesterday. Probably pushing myself too much...
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Mary, Yeah, I get short winded too, but my mom drove behind me as I ran, she said that she was traveling 11 MPH to stay beside of me as I ran. But The Key to running is to finding your pace. Start at a jogging pace, where your breathing and motions are cordinated with one another comfortably, then you will be able to travel a longer distance without being short winded. I remember when I found my pace, the first thought that went through my mind was "this is too easy, I could do this for 10 miles", but instead of spreading my distance I picked up my speed, I worked on speed for a while, and that then became my new pace.
Remember if your body tells you to rest, then rest.
Sam
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Hi everyone
I was walking and cycling as normal in about 3 days after my GK . I might add that I am not a fitness fanatic in any way and
most of my exercise is fairly gentle since I do it to enjoy the countryside rather than pushing myself to the limits .
Regards Kat
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Uh does shopping count as physical activity? ;)
I think (what little I know) is that if you had balance issues prior to treatment, you will have them post treatment. I'm really lucky in that I have had only slight tintinitus (yeah I gotta learn to spell these terms) and a fullness in the left ear. On occassion I will get a throbbing pain along my jawline or a throb behind my left ear. But really I've had it very easy relative to everyone else who has checked into the AN Country Club.
Good luck with recovery everyone. (Gees maybe I oughta get off my lard A..... and move this body)! take care, Annie
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Well. I have not been here in a while. Been working a lot of OT. So far after Radiosurgery, I have had no negative results to report, other than fatigue, but I believe that is from being overworked and underpaid. However I do have Great news, I have been placed on employment register with the Alabama State Troopers, as of January 31, 2007. So I may end up with MORE PHYSICAL ACTIVITIES this summer than I anticipated when I go in for the accelerated academy(I am really looking forward to another 12-19 weeks of paramilitary training, not). I have gotten my 1.5 back down to 12:00 since I was on here last. I am exited, but also nervous, I think the stress from my AN and GK was easy compared to the academy. I learned that before graduation I will have to run a 7.6 mile solid nonstop run full speed, they call it a "fun run", I guess the State has a sense of humor like that of Gunnery Sgt. Hartman off of the movie "full metal jacket".What ever it takes, lets do it! I just want out of small town governments.
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Wow Sam:
Thanks for the update. It is good to hear the post radio good stuff.
Best of luck to you Mr. Trooper!!
Kathy
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Sam
Fantastic news and congratulations! Next time I drive through Alabama and get stopped on a speeding citation, will you help me get out of it? ::)
Thrilled to hear of your progress! As you note, radiosurgery really is easy and if the academy is tougher, well then...... I give you credit!
Congratulations!
Phyl
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Gees Sam: I could use you in CHP here in California- guess who got a speeding ticket last week AGGGh :o... It does say to me I'm back to normal! And I have been walking on my treadmill now- also along the levy.... so post CK, I'm fine. Awesome news about you buddy! Congratulations- Annie
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Thanks to ALL! Annie, I do have some good advice, slow down! JUST KIDDING! My sister lives in San Jose, and has begged me to move west, and apply with CHP, or San Jose PD, but I am proud of where I am. I was reading an article the other day published by an Insurance Co. which ranked Alabama in the top 3 for best training for Traffic Accident Investigations/Reconctruction, that is what I do, and what I am apparently good at (not bragging, I just study and train for it constantly).
I have been recently assigned to field training a few new recruits, and it has been a blast. I was running with one of the newbies the other day, and before we began to run, this newbie told me, "old man I am gonna run circles around you", I said "O.K." after 3 miles this newbie was barely able to carry his own weight. I said "don't stop, lets keep going Rookie", he then admitted that I was in better shape than he thought. I then told him " I am 35 years old, have a brain tumor, my balance is not like yours, but I have managed to beat you". This 20 year old, then looked at me with a serious look, and ask " Do you really have a brain tumor?" I ask if he would like to see my MRI film. The kid was embarrassed, and began to apoligize. I told him it was a lesson to learn about judging people, and their abilities/disabilities. He's a great kid, but just has a lot to learn.
Hope All Are Well!
Sam
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Great story Sam....
It seems I'm more or less in the same boat as you. I was doiagnosed in october 2006 and had gamma knife (xKnife) about 10 days ago. appart from some tiredness (I already had before treatment) and being about deaf in the right ear, I'm doing fine. I'm also 35 and physically I'm in reasonable shape. I'm still able to do the things with the same energy as before, however the baterries are drained suddenly and more quickly. Not a big deal. I'm working from home as a software developper and can take a little nap anytime I want. When I wake up I'm recharged with new energy and really am more productive than when I skip the nap. I get the feeling I'm doing better each day, though it really is too soon to tell.
My tumor is substantial bigger than yours (22 x 20 mm) and if it was not for the scuba diving which induced the deafness in a matter of a second, I'd probably not noticed a thing until the tumor would get much bigger than that and become a real problem. At least now, gamma knife was an option.
Of course, I've got to wait how this all ends up, but until now I consider myself lucky, esspecially if I compare to those who had surgery. I can live with the deafness and tinitus in my right ear. The tiredness will go away, I'm convinced. Since we both are relatively young we have the time waiting for science to advance. It might 10, 15 or 20 years before they can treat my kind of deafness, but I'm convinced that will come.
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That is how I feel, buying time. before you know open heart surgery, where the chest is opened up will be a thing of the past, or it will be an outpatient thing, right?
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Hey Sam,
What a great story! I could use that at work to fan off people making remarks at me ;D
This thread is so full of energy and positive thoughts! We sure need some of those itive energy flowing for all of us... Way to GO, Sam!!
Annie - didn't realize (or remember) you have the same treatment team as mine. How are you doing post CK? I am still doing fine. Fatigue has basically gone away in my case. Just louder tinnitus. Very very mild sensation once a while on my face. Other than that sitting and biting my nails like Phyl and Bev waiting for the "fine" report from Stanford - any day now...
Mary
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SAM: nice way to put the youngster in his place ( although that is something I would do in my 20's ayahyah..) Sorry we can't get you in California- but I think its great that you have a passion for what you do, it's so important. And yes, I have been on cruise control all this week. My husband also suggest that I listen to books on tapes as that calms me down!
Okay speedy chica signing off- Congrats Sam again- take care, Annie
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Well, the last few days of running has been hot, temp. 78, and humidity seems to be up, I lost a little time on my run, but the ROOKIES are still struggling. I had one that stopped the other day and began to vomit. I thought "this is it, he's finished, I've pushed him too far!", but he stood up and walked it off. I am working them up to 3 miles now to build endurance. I have been experiencing some fatigue, and a slight dizziness, but I can still function. I go for my 3 month MRI April 17, 2007. I just dread that darn "stick" while I am in the MRI tunnel (I HATE NEEDLES). I am looking forward to when I will only have to do this once a year, or every other year! Hope All Are Doing Well!
Sam
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My energy has been terrific. Had GK procedure in late January and resumed regular schedule almost immediately. I did give myself a few days off from work but was at the gym two days after procedure. I've been back on the bike, too. I would say that when I was diagnosed, I probably lost a little momentum on my training but this was as much due to other non AN factors rather than the AN itself. I feel no noticeable difference in energy levels, I work the same ridiculous hours and have been traveling as much as ever. If anything, I am a little more concious of my balance which I now know to be diminished. Prior to diagnosis, I may have found myself the slightest bit unsteady in certain situations and didn't think much of it. Now that I know that my balance nerve on my left side is not fully function (a situation caused by the AN and not a result of the treatment), I am more aware of my stability. No wonder a year ago I would have a little trouble doing those one-legged squat reaches with my trainer. It is amazing that I could do them at all!