ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: Tumbleweed on July 12, 2008, 11:11:09 pm
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Hi, everyone:
I just got back home after having CK at Stanford this past week. Feeling pretty crappy today; traveling home really wiped me out.
I am not surprised to be very fatigued, feeling weak, a tad dizzy (disequilibrium, not vertigo) and having mild shortness of breath. But I am a little concerned that my skull feels a little numb, like it's been shot up with novacaine. And I also feel a little like I'm out of my body (kinda like the fuzzy feeling you have when you're drunk, but without the stupor).
Is this normal? Has anyone else felt these symptoms (out of body, numb head)?
Thanks,
Tumbleweed
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HI tumbleweed,
Yes it is. First few days were weird for me, between steroids, nerves and fatigue it was all a bit of a stress inducing event. I felt like my ear was a separate entity to my skull, had weird episodes of going red like a tomato one minute, the next I was like a blanched almond, tired at a seconds notice and not to steady on my feet. Feeling drunk? Yes, I'd say so. One thing I realised of course very quickly, this was a MAJOR surgery, not a walk in the park. It's the brain we're dealing with, any intervention, however minimal it seems, is right the opposite as far as I'm concerned.
So, take your time, those symptoms should vanish pretty soon once the initial trauma has settled. And, don't forget, the mere fact of going for such an intervention can give us enough stress to cause all sorts of weird effects. Wew might be as cool as a cucumber at the time, or we think we are, but it takes a lot out of us. Well, ok, I did for me anyway.
And by the way, welcome to the next phase of your life! :) Continued health a great recovery to you Tumbleweed.
Ciao, Lorenzo
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Hi Tumbleweed and congrats on achieving "postie-hood". Hope you had a little fun with the "eye" and it sounds like you are doing fine. Like you, after immediate treatment, I did experience the "weird" overall feels that you note and that outta-body feel can sometimes be attributed to the infamous "wonky head" we note around here. It's kinda like taking cold meds and getting that "disconnect" feeling, toss in a little balance issue here and there and yep, that's it.....
Fatigue seems to be the toughy to initially overcome (for those that did have it immediately post-treat), so if you feel a nap coming on, go for it (and enjoy one for me too!)
Congrats again...... may your AN die a fugly death now and onward/upward to wellness.
BTW, wondering what happened to your hair during treatment? You tie it back or ? ? ? BTW, I cut mine off yesterday.... needed a healthy cut.
Phyl
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Thanks so much for your replies and insight, Lorenzo and Phyl. It's reassuring and comforting to know that these symptoms are "normal" and that I'm not the victim of a radiosurgery gone tragically wrong! :)
Phyl, they didn't need to cut my hair. They just sort of draped it over the cradle the back of my head was rested on. They didn't even want me to tie it back in a ponytail, as that would've changed the CK setup in some way. They were very exacting in their setup for treatment, fine-tuning my position and marking landmarks on my mask for the followup treatments #2 and #3. I can't say enough good things about Stanford's entire staff. Unwavering attention to detail, cheerful/reassuring attitudes and very responsive to all my questions and concerns.
Lorenzo, you're right about the emotional impact of the treatment. I was a mess when I got home and the steroids wore off and I realized how out of it I was. I was also a bit panicky during my second treatment. The steroids had me so hyper that when the "big eye" swung around to the front of my face, my heart started pounding like a jackhammer. They gave me an anti-anxiety pill to calm my nerves before the treatment, but I didn't even feel it. So, for the third and final treatment, I arrived half an hour early and asked the meds doctor for a double dose of anti-anxiety meds. That did the trick; I sailed right through the third treatment without any problem.
I'm feeling much better (so far) this morning, after a restful night's sleep. But it does seem that at any minute I can become very fatigued. I also notice intermittent "red face" episodes like you mentioned, Lorenzo.
It's good to know that these are all normal reactions. Now I won't worry so much. Thanks a ton to you both for your support.
Best wishes,
Tumbleweed
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No problem Tumbleweed. Sounds like you're going through the perfectly normal sequence of events as far as I can see. Took me about a week to feel normal again and calm. Then, I went on a driving holiday right after Ck, around California / Napa / Monterey, so I felt great. The rest after that was a bit of an up and down journey, but that was to be expected.
Feel free to send a PM if you want to in future and you want to discuss anything. Glad to be of any help. :)
All the best,
Lorenzo
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Thanks, Lorenzo!
All the best,
Tumbleweed
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Hi Tumbleweed,
Glad to see you made it through. Also glad to hear that "tomato face" is considered a normal post-treatment symptom; I would not have guessed that. :)
I expect you will feel much more settled in a few more days. Take care.
Steve
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Tumbleweed, great news about the hair and I knew it would all work out. Funny, I really haven't thought of it recently but you reminded me about the flushing/red/warm face.... felt like menopausal hot flashes, almost flustering feeling, face very warm to the touch. I really haven't heard others speak of it but yet, it really hasn't been mentioned lately either. I just stuck my face in the freezer from time to time... and it did let up after approx 1 month....
(and yes, Jan/Lori, I can distinguish between a hawt flash and CK flushing.... geesh!) ;)
Hang in there, Tumbleweed. You're doing great!
Phyl
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The freezer sounds like a good idea; I think I'll try that! :)
I can't take credit for the tomato-face revelation. Lorenzo pointed that out first. I just thought I had a suntan. :)
Tumbleweed
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... and, did anybody get the reverse of the tomato face, the blanched almond look? or was that just me? One used to follow the other, red first, then blanched. :)
Ciao, Lorenzo
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Fatigue hit me pretty quickly after treatment as well and came and went for several months. It's a bit of a roller coaster. From the postings here, I get the sense that I had more intense post-treatment symptoms than most, but if you are interested, I describe my post-treatment symptoms in detail in the "post-treatment" section of my website (see below). Things did improve a great deal for me but it took some time. Be well, Francesco
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Tumbleweed:
I trust that you're doing much better at this point, about a week past your CyberKnife treatment at Stanford.
I believe your experience serves as a good example of what actually happens during and after radiation treatment. While radiation is certainly easier to endure than surgery, it's not a quick in-and-out, no-disruption-in-your-routine kind of experience. There are discomforts and definite after-effects involved. I think some folks either are not aware of that or simply see radiation as so much easier than surgery they ignore some of the realities. Your narrative helps inform those who may be considering CK and serves a valuable purpose. I offer my thanks to you for posting it. May your recovery continue and may you have even better tomorrows. :)
Jim
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Jim, you're absolutely right. I underestimated the impact CK would have on me immediately after treatment. I think that's partially due to a slight lack of information from Stanford in this regard (they were thorough about everything else). When I talked to a nurse practitioner on my CK team a couple months before treatment, she mentioned I might be fatigued afterwards, but the possibility of the other symptoms occurring -- including numb skull, out-of-body experience, shortness of breath -- were not mentioned (perhaps because not everyone experiences these symptoms, so they didn't want to alarm me unnecessarily?). Dr. Chang had mentioned to me before treatment that the symptoms I was having before treatment could intensify after treatment, so I expected I might have increased disequilibrium and tinnitus (it turns out my tinnitus didn't increase; in fact, it may have decreased slightly!). Bottom line: everyone should know it's not a walk in the park. Or at least it wasn't for me. It was a moderately traumatic experience emotionally, and the first day post-treatment was difficult physically and emotionally for me to endure (in large part because the symptoms surprised and therefore frightened me).
That said, after treatment, Dr. Chang assured me my post-treatment symptoms would be transient and should abate shortly, and he was right. I'm doing much, much better now, 9 days post treatment. The first three days were the worst. After 5 days, I only had increased (mild) disequilibrium and (moderate) fatigue (and my usual tinnitus) but was beginning to go for walks. Yesterday (8 days post-treatment) I walked 1.2 miles twice in one day, once in the AM and again in the PM to avoid the summer heat (which really wipes me out right now because of my underlying fatigue). I'm planning on doing 2 miles today. My disequilibrium is now about 15 to 20% greater than it was before treatment, which is tolerable. Hopefully that will improve as I walk more and my brain compensates for aberrant vestibular signals it's receiving. In summary, I'm feeling waaaaaaaay better than I was the day after treatment, and I continue to improve with each passing day.
Best wishes,
Tumbleweed
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P.S. One other thing I forgot to mention: on about day 5 post-treatment, I had a sharp stabbing pain happen on the opposite side of my head from where the tumor was. This happened about 4 or 5 times within the span of half an hour or an hour at most. It would be intense for about 1 or 2 seconds, then take another 30 seconds to fade completely away. Thankfully, that hasn't happened since.
As I never get that type of pain usually, I assume this was due to the treatment.
Anyway, I mention this so other people who are about to get CK know what to expect and don't become too alarmed if it should also happen to them. I'm none the worse for it now, and it was over quickly. I remembered someone else on this board also mentioned this happened to them after CK, so it didn't concern me too much. It wasn't horrible, but it also wasn't pleasant.
Best,
Tumbleweed
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Well, I'm back to feeling totally wiped out (profoundly exhausted and short of breath) for the past couple days and into today. How long do these episodes of fatigue usually last?
Tumbleweed
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ah, the dreaded fatigue.... ok, here goes (from my perspective/experience):
I know that all brain tumors (regardless of type, whether benign or malignant) and fatigue go hand-in-hand. There is a brochure that we posted here a while back that was written by Dr. Peter Black of Brigham/Woman's (Boston) and Nancy Conn-Levin (she just spoke recently to the ANA NJ support group).... here is the brochure (you will need Adobe to open it as it's a .pdf file):
http://www.modularmisfits.com/forums/files/Brain_Tumor_and_Fatigue.pdf
Now, based solely on my experience, fatigue hit me hard immediately post CK. The first weeks were tough and I have to believe that part of it (not all but part) was due to emotional stress of the treatments, as well as what the body endures during treatment and knowing fatigue is all part of brain tumors.
Like you, I had (and on occassion, still have) the sharp head pains. I've noted it to my CK team (I do all of my follow ups with them, with my back-up surgeons and my PCP). Not completely known if, in my case, they are "ice pick" migraines as I only have minimal facial numbness involvement.
Here I am, over 2 yrs post CK.. and there are days I get whacked with the fatigue... and there are days I am fairly ok. We do know that forms of exercise that will help raise the endorphine levels in your body to help in alleviating the fatigue.... just a thought.
Hang in there.... oh, the ride we ride, but honestly, you are doing fab. Hang tough!
Phyl
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Thanks, Phyl. you mention "forms of exercise... to help in alleviating the fatigue." Are you suggesting I go for a walk, for example? I felt like maybe I shouldn't push it and should just rest as much as possible. Did exercise help you?
Thanks,
Tumbleweed
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HI Tumbleweed,
Sounds like you're going through more or less what I went through. Rest assured that the fatigue does get better, it just takes time. This is major surgery you had, on your brain! Needless to say there are effects from it that will hit us hard. We're not all the same, some have a much easier time, others had it much harder too. I know that my fatigue took about 8 months to get better, and didn't fully vanish until about 12-14 months. This said, even now 3.5 years later, if I do too much or push myself too hard (doesn't happen often! :) ) I still get tired easily. Personally I think that fatigue is something that's here to stay for me. Maybe not so much fatigue, but lack of stamina. I have more energy now than I had for a long time, even pre-Ck. But the threshold from feeling fine and energetic, and feeling tired is lower, and the change over can come very suddenly without much of a warning.
One way I had to deal with the sudden and incredible fatigue was to take naps whenever and wherever I needed them. that was the only way for me to function. I slept in bookstores, car, hotel lounges, know all the spots one can have a micro-nap in my town here. Even slept at work in the staff office (teaching has it's advantages). Take is easy, rest when you need to if you can, your body is healing and will be for a while. Listen to it.
Good luck,
Lorenzo
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Lorenzo, thanks for your perspective. I had unrealistic expectations about my recovery time. A nurse practitioner at Stanford said I "might be fatigued for a couple weeks." When I started rebounding strongly on Day 6 post-CK, I thought I was through the worst. Three days later (and now still), I was back to square one. Knowing this might take months or years gives me more patience with it.
I guess I should cancel that mountain climb I had scheduled for 3 weeks from now. :( Sounds like I'm joking, but seriously that's what I had planned! It's hard to let go of being very active. I guess we can't all be like Lance Armstrong. I think I need to rethink my capabilities, at least for this summer... or year... or decade. Man, this sucks.
Best wishes,
Tumbleweed
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HI Tumbleeed,
Well, ok, maybe mountain climbing might be a tad ambitious alright, but going to the base of the mountain and enjoying the view and fresh air might be nice, or as far up as you can manage.
I'm not saying that it might be years for you, months maybe, but just how long, who knows! You seem to be a fit person if you do mountain climbing, so I can imagine this sort of level of fatigue must be very frustrating for you. At the same time, just because you are fit, it might mean that you'll get over it faster and recover at a faster rate. Basically, nobody can predict it, and one should mind one's body and take the time to heal. However, a bit of pushing and challenging does no harm at all. In fact I think it might be a good thing to push a little form time to time. But maybe not just right now.
The fatigue that I experienced did not remain at the same level for the entire 'fatigue period'. As the months went by I was able to do more and more, but always minding that I would not step over the fatigue threshold. Doing so would have meant a few days of little energy. It really was a time of thinking what I could do and prepare. Going out socialising or for meetings meant a nap before, and a quiet morning the next day. It's all about stepping back and see what you can do. Takes some adjusting, both in terms of scope and ways of doing things. But you'll get used to it, and soon you'll find yourself back to a level of energy that might even surpass what you had before treatment. Be patient. You'll get there. Remember, this is the start of a new life, and you need to see how you can return to as close as before as possible. Might be hard to say, but it may well be the case that it will never be quite the same. Close, but not the same. For me, I feel better now within myself than I have for years and years. Treatment is just a step in the process, now you're in the next stage.
Ciao, Lorenzo
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Thanks, Lorenzo, for the extra detail on your recovery. It answered some lingering questions about how much I can push myself and what to possibly expect overall.
Best wishes,
Tumbleweed