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September 13, 2013 at 10:08 am #21574buffcodyParticipant
Up until the last couple weeks, I’ve been very spoiled with quick recovery and few side effects from my different treatments, surgical and systemic, in my battle with metastatic melanoma over the last 16 months. But the recovery period from my craniotomy three weeks ago has me down and wondering if there might be something I could do about it or whether it is just what it is and I need to suck it up and be patient, which seems to be my neurosurgeon’s guidance.
I usually sleep 6 to 7 hours a night, no naps. Now I’m sleeping the same at night but need two naps during the day of close to two hours each. I experience a lack of equilibrium while walking and frequently just standing up to walk, which definitely discourages me from wanting to walk, so I have been much more sedentary than ever, having to force myself to do anything, partly from a fear of falling.
On the improvement side, I am able to read even smaller print this week. A week ago, reading books, newspapers, computer print, was very difficult and blurry. TV was o.k. on the eyes, but I rediscovered why I have watched so little television over the years.
My theory before I saw the neurosurgeon last week was that my problems were related to the truckload of medications I was on, including two anti-seizure and one anti-swelling drug at high dosages added to my usual anti-hypertensive and other pills, was just too much and causing side effects. The doctor’s verdict was that I was just experiencing natural side effects of recovering from brain surgery and that the recovery, I guess including these annoying side effects was the culprit, not the drugs, high dosages of Vimpat, Keppra, and Hydrocortisone.
But besides the improvement in reading, I don’t feel other improvements over the past weeks in my “side effects.” I’m wondering if anyone on the Forum has had experience with brain surgery
and its aftermath that might help me decide whether to be more of a pest with the neurosurgeon about medication levels or just resign myself to the philosophy of “it is what it is” and wait a few more weeks rather than pushing more buttons at the surgeon’s office right away and becoming a pest.September 13, 2013 at 3:05 pm #62483Craig_GParticipant
I’ve had 3 craniotomies, but have only been on the anti-seizure med.s once. My side effects were like yours or worse for the 3 weeks I was on them. Constipation was also an issue, and I don’t recall the root issue for that – probably the pain meds. The Dex (steroids) had some effects on my sleep, but I am finding that my effects are different than others. My far vision is ok, but my near vision for reading and computing is still better without my glasses. I hope that goes away with time.
However you feel, be sure to keep moving around. I am now fighting two bed sores, and while I am active, getting rid of them is not trivial. I swear all I did was spend a couple of weeks falling asleep in my brand new recliner, and bam, there they were. I think the PA at my derm’s office has me on a good plan with med.s and care. You really need them taken care of before they break the skin.
Take care.September 14, 2013 at 5:15 pm #62484kylezParticipant
Glad to hear from you. Even though you’re fatigued and have other issues, it still sounds to me that, in the scheme of things, you’re doing OK, and you are in a recovery phase.
This brochure from the National Brain Tumor Society about Fatigue helped me put in context some of my post-surgery issues. Even though this is a Kaiser link…
http://mydoctor.kaiserpermanente.org/ncal/Images/Brain%20Tumors%20and%20Fatigue_tcm75-698666.pdf ” class=”bbcode_url”> http://mydoctor.kaiserpermanente.org/ncal/Images/Brain%20Tumors%20and%20Fatigue_tcm75-698666.pdf
Particularly I found this advice helpful,
“Develop realistic expectations. Avoid competing with
the person you once were or holding yourself to former
standards. You now operate without the energy reserves you
once had. Resist the pull to keep running on empty. Give
yourself permission to take a rest or a break without feeling
that you are “giving in to the tumor.” Long-term survivors
who feel they have conquered fatigue say they did so by
redefining “normal” and accepting the person they are now.”
I still believe in doing, just not overdoing. Within my “new normal” after surgery I probably pushed myself just a tiny bit past where I was feeling. To me that’s the key — where you’re feeling now, not some time in the past. I would say, see where recovery takes you over the next few months — the brain will likely start to gradually adjust given sufficient time.
Best, KyleSeptember 15, 2013 at 10:05 am #62485buffcodyParticipant
Thank you for the very helpful response. You’ve introduced me to a source of literature that I didn’t know was out there. Very practical in many ways. A source of patience that I need very much at this point among other uses. Lots to think about but a little at a time in keeping with the, at least for now, “new me.”
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