ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: ppearl214 on December 06, 2006, 09:21:59 am
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Hi all,
Want to see if all radio-treatment patients can help with a quick survey for Dr. Medbery (who does CK and GK in OKC), who is a volunteer dr on the Cyberknife support board (http://www.cyberknifesupport.org/forum/).
question:
How many of you have run into fatigue post radio-surgery? This question is open to ALL radio-treatment patients (ie: CK, GK, FSR/Novalis, Proton).
Has the fatigue been severe, temporary, eased over time, etc. Are there certain times that it enhances (ie: certain situations that would bring it on and enhance it).
If you can please post your replies here, that would be great. I will have Dr. Medbery check this thread for replies.
Thanks all!
Phyl
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Treatment: CK
When: Dec 04
Fatigue: Severe initially, decreasing over time (6-8months), can still occur now
Circumstances: Initially it occurred suddenly, usually at any time of the day,seemingly without any particular trigger.
At present: Still happens if I do too much, ie drive for extended periods of time, work too long, exercise too much (doesn't happen often that one! lol) Lately I find noise can bring on a sense of tiredness. Stress does trigger it too. Mid to late afternoon and evening are the worst. But, it does not happen often now.
'Solution': Not pushing nor fighting it. Go with it. Short naps of a few minutes help, regardless of where. Watch out and take regular breaks.
(Addition) Like Michael below, I also ahd the 'blues', for quite a while. In fact, the emotional aspect post CK was something I didn't expect. It probably warrants a separate post sometime. I have more details on my blog.
That's it for me. I'll also add that the kind of fatigue I experienced for the first 6-8 months was beyond anything I had experienced before. Very strong and overpowering.
Hope this helps. All the best,
Lorenzo
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hey Lorenzo! Great to see you here! :)
Thanks so much for the info! I know it will be helpful to Dr. Medbery. :) Hang in there!
If others can also give their inputs, this would be extremely helpful to Dr. M in his investigation of how radio-treatments and fatigue go hand in hand.
Thanks again!
Phyl
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Hiya Phil,
I'm just getting use to this 'cross feritlisation' between message boards thing. Good to see you too. Lets hope LOTS of people will reply to the survey, I'm curious to see what other people's experiences are. Not having any ANers around me here and not having personally met any that had CK or GK or any other form of FSR, I'm certainly interested in all this.
Ciao a tutti, Lorenzo
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I hope I am placing this information as you want it, not sure if there is a form somewhere else, etc.
I am 52 M and had 11MM AN, left side. Gamma Knife 4/2004, initial slight swelling 0-6 months, tumor appears dead and slight reduction in size at 18 month MRI.
I get up most mornings at 5:00 AM and swim/run or lift. This has been my schedule for about last 20 years. Not in great shape but not over weight.
I get "sleepy" after any meal later than breakfast but feel that was my situation before the GK. I really don't feel any more tired. I did go through a period of the "Blues". I couldn't explain it and still have some slight feeling of it now and again.
I feel very fortunate as I feel my life has gone on as it would have. I had some hearing loss before GK and it seems to be the same. The ringing is always there but it is the lack of hearing that "bothers" me. Noisy rooms are a bad place for me now more than before and the sounds in my affected ear appear more metalic and sharp as opposed to a range of sounds.
Hope this helps, let me know if I need to post somewhere else.
Michael
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Hi Phyl,
I'm post ck almost 3 months now, getting my first mri in a few weeks.
So far, the treatment went great, even the side effects from the tumor seem to be dimishing already, but the success is yet to be seen via Mri, I hope to get results such as you did phyl! My side effects mainly being numbness/coldness on face...some dizziness.
Regarding fatigue, I've had some as I find I sleep better than usual ;-) But its really not too obvious...what I've really noticed more is when I am a bit tired, I seem to have a really low tolerence to any BS! ;) A friend of mine was actually telling me there is a hormonal difference related to having a tumor...perhaps this is all it is as I seem to be pms-ing alot.
I too have found noisy rooms a problem, I get really frustrated with "white noise"...although my hearing (as far as I know) is still perfect.
melinda
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I am coming up on the 10th of this month being 5 months out from FSR. I still work a 40 hour job except weekends. The first 2 months I did not notice that much. I was told at the hospital where I received treatment that I would be extremely tired. When that did not happen at first I thought they must be kidding. Wrong. My mid-day or late in the evening I get so worn out and fatigued that usually I am in bed by 7 PM and sleep good all night. I too have a very short tolerance when this happens. Just like to be left alone and sleep. Notice more if I push myself at work but also happens on weekends when not working. Ron
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FR. 26 treatments: 1 daily for 5 weeks between September 11th and October 16th, following retrosigmoid approach microsurgery performed on June 7th (2006) to remove a 4.5 cm AN tumor. Approximately 50% of the tumor was removed by surgery. This partial removal was pre-planned in order to avoid nerve damage. The surgery was successful. There was no nerve damage, no complications post-op and my recovery was swift. Just about all of my pre-op AN symptoms disappeared following surgery. No ill effects from the low-dose daily radiation treatments, either. Slight fatigue near the end of the series - but not overwhelming. I drove myself to and from all 26 treatments (62 mile round-trip, 5 days per week) but always had my spouse present, 'just in case'. I always slept well at night, even during the radiation series. Still do.
Statistically, I'm 63 and in general good health. My recovery following both surgery and radiation was rapid but otherwise unremarkable. I have no emotional 'issues' connected with my surgery or the radiation treatments other than relief that it's over. Life goes on. I expect complete success (no tumor re-growth) and have a very supportive family who are equally optimistic.
Jim[/color]
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I was 44 at time of CK treatment and did not experience any noticeable fatigue afterwords. I did experience daily brief episodes of vertigo for the first 30 days and one significant one after six weeks but nothing beyond that. Fairly active lifestyle prior to treatment with a daily cardio workout of either run/ bike/ swim which was resumed several days after last treatment without difficulty. I don't recall any other emotional or mental issues after treatment than I had going in ;D
Mark
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9.5 mm right side, CK October '06; no significant changes since treatment; however, symtoms have ups and downs; ear pressure/pain,tinnitus,balance, fatigue. I don't think the fatigue is any more intense since treatment; I believe the fatigue for me has more to do with fighting my balance and hearing. Its not only hearing loss but distorted hearing and certain sounds cause pain. I have noticed in the past few days all of the symtoms are more intense and I attribute it to the fact that I am about 2months post treatment and information indicates symtoms can increase during the first three months post treatment. The only medication was Steroids just during the days of treatment. Now I only use ibprophen when absolutely necessary. I am trying not to let this interfere with my normal activities; however, I do manage the effects of the symtoms by limiting time spent in difficult environments that exaserbate the symtoms.
Bev
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I can't thank you all enough for your inputs on this... Dr. Medbery has informed that he is monitoring this thread and all inputs regarding post-radio fatigue is so appreciated. He's compiling this info and all you note is truly appreciated.
Thanks again!
Phyl
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CK: 4 months
Fatigue: sometimes (big fatigue) - it feels like jet lag and I have to hit the sack. Less now than but still happens when I push my body too much.
Other symptoms: louder tinnitus, nerve pain (all gone now), numbness (almost gone)
Exercise: have not returned to pre-CK level of daily 30 minute exercise
Emotion: feeling great since CK (relieved!)
Phyl - this is great that you are doing the survey. Thanks.
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FSR 25 treatment days...
. about 15 min after first treatment, felt woozy and tired
. fatigue built during rest of treatments, again often descending on me about 1/2 hr after treatment (good thing i had a driver for transportation)
. on occasion if there was a bit of a wait before treatment I went to lie down in nursing station which surprised me as i have never been the type to nap during the day...couldn't fight it, however....
. big fatigue episodes at any time of day hit me about 2 months post fsr, which subsequently have lessened over the months, am about a yr post fsr now, am still not able to maintain level of activity prior to treatment... much like some of you i must pace what i do, and if I overdo it one day the next is pay back day...
I'd like to add that the big fatigue episodes are unlike anything i have experienced at any time prior in my life and I used to be able to pull all nighters which was a different fatigue completely...
Windsong
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Just had my Gamma Knife on Dec. 5. I felt great the next day, almost too much energy. But the day after that WHAM. I slept for nearly 24 hours. My husband made me some soup and I thought it was exhausting to lift the spoon!
That has passed very quickly. It's now Dec. 9 and I feel back to my regular energy level. I just cleaned the house and we're going shopping today.
I'm wondering if it has anything to do with the steroid shot.
Thanks, Phyl!
vjh
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The fatigue does get better over time. Lorenzo, I believe it has nothing to do with long plane rides at least in my case. I have been traveling quite significantly since CK. I am talking about around the globe 24 hr flying one way. I have not found any correlation between long haul flight and fatigue level. I do find when the interval of being very tired is longer these days. So I am hoping it's more related to the time since CK.
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Mary, I agree. I've been travelling around for a good while myself including coming back from CK (24 journey) and didn't find a correlation between flight and fatigue, other than the normal getting bored and tired. There are clear triggers for me: noise, stress and no rest. Flying does give the chance of resting, so it does not trigger it for me. Also, I spent the summer driving around France and Switzerland and back here over 5 weeks, and no problem. Just as long as I had rest periods every day, and didn't do too many long driving days. The occurances of Big Fatigue are getting fewer and fewer now. I think we'll have to watch ourselves to make sure we don't have any episodes, but the energy levels will get back to near normal.
Lorenzo
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I had ck treatment in aug 23,24.25 2006 I was real tired the first few weeks. I still get real tired in the middle of the day. Yet I have trouble sleeping in the evening I am being treated for a Acoustic Neuroma about 2mm. I beleive my biggest trouble is the hearing lost & ringing in my ear & my balance. I am due to go back for mri on 27th of december. I seem to be having more trouble now then before with walking straight climbing up and down steps. Now even using elevators seem to make me very dizzy. Has anyone else had this problem after ck . I did have balance problems before but now seems worse is this normal afer ck?
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You all rawk! :) thank you so much and will touch base with Dr. Medbery to make sure he's got this data... this fantastic and thrilled that an AN treating physician is open-minded enough to hear (sorry for the pun) us out!
*yawns from fatigue*
Phyl
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zzzzzz..... uhu? wot? oh right. ya fatigue. great that somebody from the medical profession is paying attention to that! back to my nap now.
lorenzo
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Hi Nancy,
My tinnitus is definitely louder since CK in Aug 2006. I did have a little more symptoms (pain) than before CK but they have mostly subsided. I think the swelling must be the culprit that intensifies the symptoms we had pre-CK. Sounds like you and I had treatment about the same time. Do get some rest. Fatigue does not work too well with us posties. I find that if I rest well, symptoms are lessened. I wonder if others find the same result?
Interesting that some of us are getting MRI in 3 months vs. 6 months. Does anyone know what decides the MRI duration post treatment?
Mary
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Absolutely! Rest is a must, helps fatigue, increases energy levels and alleviates tinntus a bit too. I recommend short naps whenever the body says 'Enough'!
As for MRI, no idea. I was told after the first two in year one to have another one in a year, 12 months interval. I guess I must have been doing fine! :)
Lorenzo
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Its so good that i found this website. for the longest time i was doing this alone. it sounds crazy but its good to know that some other people besides me are having the same symptoms. I still have 10% of my tumor left. I was pregnant when i had my surgery. I forget the size i have my mri somewhere,but it was the size of a golf ball or close to it. any way we were making plans for surgery june 2004. the day before surgery i took a pregnancy test. it was positve. surgery cancelled waited to get to 2nd trimester. my symptoms were way worse. week 12 had surgery couldnt take pressure. Docotor went in massive size filled my whole head. surgery done oct 2004. grew that fast. 11 hour surgery. doctor concerned about baby said had to go back for second surgery. brain swelled, steroid, shunt, for drainage. I could get into more details , but i dont want to gross anyone out. All in all i was blessed with a beautiful baby girl . now 3 boys and 1 girl yippy!!
Reg
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I had gamma knife in 2002. I have pretty much returned to my normal life. I did experience quite a bit of fatigue following gk but it has gotten better. I get fatigued in the afternoon or evenings especially when I have done too much during the day. I have also noticed that I have a much lower tolerance for bs--like some one else said. Hope this helps.
Maria
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Hi all,
Great job! Dr. Medbery has been "lurking" this to see the info you all have graciously shared. There is talk of him possibility putting together an official survery form on this so the data can be better collected. Would you all be interested in completing such a form so we can get it to him to make this more official/scientific?
Thanks again! It's great to know we have an AN treating physician who is willing to take the time and energy to help us research this further!
(psssssst, Dr. M... thank you!)
Phyl
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Go with the form Dr M! Great, Phyl, lets see this happening.
Ciao
Lorenzo
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My two cents:
I would be happy to participate in any way to further any studies relating to AN. I vote for more understanding by the general public AND the medical profession.
Thanks to all you "activists"!
Bev
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Hi Phyl
I'm not sure how far out past the treatments you'd want to have this information. Chelsea just finished her last treatment (28 FRS-Novalis) on Mon. Dec. 11 and is now tapering down on steroids for 15 days. Of course she is easily fatigued but that might be because she hasn't had time to fully heal from everything she has been through in the last 6 months.
Michelle
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Treatment--CK April 2005
Side effects including fatigue: Very minimal. Was back to work immediately and have not had any problems since. My tinnitus has all but vanished, my balance problems have worked themselves out, and my hearing has stayed about the same (it was gone before treatment). The balance and tinnitus were problems before treatment.
My MRI shows slight reduction in size of tumor.
Sally H
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Hi Michelle,
Chelsea's inputs would be great.. the fatigue factor is what we're honing in on, so that would be great... and to the rest of you, thank you so much.
I did hear from Dr. M that it looks like an official survey form is being drafted to help better track the responses. Once I hear more on this, I'll keep you updated. For those that would like to participate, thank you in advance for your help. Let's truly find out what the heck is going on!
Thanks again!
Phyl
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I underwent surgery in August to "debulk" a cystic part of my AN, then GK in October.
Fatigue, especially around 6 weeks after GK, has been pretty bad. My Dr. told me the first time I consulted with him that it is the most common side effect, so maybe it's psychosomatic?! Whatever the case, it is terrible. I hate talking about it, and try not to, but I must tell my husband a half-dozen times a day how tired I am....
I am slowly trying to resume to my pre-diagnosis activity level. Currently walking 1.25 miles twice a day, slowly.
I would love to participate in any future surveys!
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I am a GK patient (November of 2003)
How many of you have run into fatigue post radio-surgery? I did have fatigue but it didn't last long...I felt as if I just finished doing a bunch of yard work and helped someone move in the same day.
Has the fatigue been severe, temporary, eased over time, etc. Temporary
Are there certain times that it enhances (ie: certain situations that would bring it on and enhance it).
No not really. I felt like myself in about 2 days.
GM
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a thought occurred to me while reading the responses.... and that is that in reading the responses in this thread, there seem to be those who do not have fatigue issues beyond what most consider normal prior to having an An.... in wondering about that i tossed around my reading about fatigue generally for any brain tumour patient regardless of whetehr it was major surgery or radiation of various modalities.... then i wondered well why is it that some regardless of treatment don't seem to experience unusual fatigue? from what I have read not having it is more unusual you see...
from those thoughts came the question that maybe there is something different about the Ans for the people who have little or no fatigue issuse.. and then it popped into my mind that some Ans "pop" out ( recalling the picture of that An that someone posted yuck btw)... from which thought i thought well, if it popped out is that because it had a nice capsule around it closing it off to the rest of the head and if so, does that mean it's maybe a bit insulated from the rest of the brain and its functions? and does that mean sticky type Ans may have a diffrent effect on the brain or fatigue?
and finally, where does the feeling of fatigue come from? in the brain essentially as does sleep? in the muscles? in some other place? all of those? and what is the common factor?
if you've read this far, i guess i should add that i thought these things while waiting for my dinner to cook... and hope the fatigue thread hasn't been skewed off with my questions/thoughts....
basically thought i'd share what i was thinking...
Windsong
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Thank you Dr Clinton Medbery, III
I was one of your newest patients and I couldn't have asked for a better Doctor and Staff. I highly recommend Him to anyone considering CK, GK. He has been listed in the Yearly Redbook MagazineTop Doctors of the Year, for over 6 years straight in the USA. If you live near Oklahoma City, I would definitely recommend him. You will be treated as a person and then a patient. I had a prior Micro-surgery in ST Louis, MO July 2003 and was told it had been removed entirely. So,... to my surprise I was one of the lucky patients (less than 5%) who had a regrowth that was discovered June 2006. This time, due to the risks of a second surgery, I chose CK. Best choice I ever made and I wish I had done so the first time. Recovery time is very much quicker it seems and symptoms are about the same but with no pain or intensive care.
My CK was performed with 3 treatments, 3 days in a row Oct 30, 31st, and Nov 1 2006. I noticed after the 2nd treatment an increase in headaches, dizziness, ringing of the ear, loss of hearing, some eyelid droop, and extreme Fatigue. The headaches were severe for about 1 week. Dr Medbery prescribed a medication for 6 days to treat the headaches which I have forgotten the name, 2mg of Valium 3 times daily and this helped the dizziness but it has never completely gone. I have forgot to take the Valium several times and immediately noticed more dizziness and fatigue. Moral of the story is to stay on your medications!!ÂÂ
As of this week, the headaches are far and few between now and can be controlled with 2 Tylenol 500mg when they occur. The ringing of the ears is louder and quite annoying but as we all know it just has to be put up with. I work in an office setting but I do occasionally get disorientated when I get up to walk. Fatigue seems to occur for me at home in the afternoons after trying to do a little, if any exercise, chores, etc. I get tired very easily and if I set down to rest a minute or two, I find myself waking up several hours later wondering how that happened and where the time went.ÂÂ
Sometimes I find it hard to go to sleep, because of the naps but when I do finally sleep, I am in a deeper sleep than before CK was performed. I use to get by on 6 hours of sleep but now, I have to have 7 or 8 to feel rested. I remember I had an increase in fatigue from the Micro-surgery too, but thought it was related to the Decadron steroid I was on. It has a side effect of increasing blood sugar levels and I remember a lot of fatigue during my recovery period. Correct me if I'm wrong, but Steroids and high blood sugar levels can cause fatigue, isn't that right? I don't know if this is a correlation with CK or not.
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I have the survey and will post a new thread for those interested in participating in the survey... thank you all so very much!
Phyl
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I am almost 1 year post CK with Dr. Medbery. 3 sessions. When my treatment was completed I was in a state of survivor euphoria, I think. I had more energy than two people should have. After a week or so the fatugue took over. I would come home from work and go to bed at 6:30 or 7:00. Sleep until the alarm went off the next morning. I found I would fall asleep during my lunch hour. This lasted on and off for about 7 months. On rare days I still do this.
I also think very highly of Dr. Medbery and his team. Worth a trip to Oklahoma City in my opinion.
Sandy
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PHYL: day one, no fatigue- in fact I am buzzing- but this is the steroid and the post exuburance of not going under the surgical knife! Will fill out survey for you in a few weeks... thanks, Annie