Post Radio-surgery treatment and fatigue: Important Survey

[mylump]

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

[joycebaskin]

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?

[ppearl214]

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

[mylump]

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

[marystro]

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

[mylump]

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

[underpsi]

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

[mll]

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

[ppearl214]

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

[mylump]

Go with the form Dr M!  Great, Phyl, lets see this happening.
Ciao
Lorenzo

[BevM]

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

[chelsmom]

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

[sallyh]

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

[ppearl214]

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

[mar50]

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!