One month CK Followup visit(s)

[sunfish]

Today I had the first of my followup visit(s) - with the radiation oncologist.  I do like her, she's kind of a small, spunky woman who must be about my age.  I concluded today that she knows alot about zapping things with CK, but I'm not sure how much she knows about what she zapped, and what I should expect.  No matter, she says all my followup will be through the neurosurgeon now, who I see tomorrow (followed by appointment with my primary care doc).

One month later:
Pros:
--Odds are, the AN is dead
--No balance issues, other than teeny, tiny floaty feeling sometimes, and an occasional stagger/misstep
--Hearing has been pronounced "better" by ENT, but you couldn't prove it by me
--Energy level, sleep, appetite, weight, etc. good.

Cons:
--Blood pressure still mysteriously up, even with meds. Oncologist not sure why.
--I've limited my activities somewhat due to blood pressure problems, oncologist said today to return to regular exercise.
--Alot of frustration over the two cons above, as I'm a weekend warrior/triathlete, and this has really messed up my season
--Some very minor, microscopic, teeny tiny facial issues, which we just noticed yesterday.

With regard to the facial issues, yesterday my teenage daughter came home and, immediately upon seeing me she said, "What's wrong with your face, Mom?"  Not exactly what a recent AN patient wants to hear!  She said my "good" side looked tight.  I asked if my "bad" side looked slack.  She still thinks the problem is with my "good" side.  Oncologist today noted almost invisible weakness on my "bad" side.  When I puff my cheeks out like a chipmunk, I'm a lop-sided chipmunk.  I asked my husband if I looked OK, and he said "Hmmpfff!" (translation: "Is this like the 'does this outfit make me look fat' question?).  Weirdly enough, I've had a coldsore-like problem on my "bad" earlobe (have had this when pregnant, 19 years ago) and some related nerve pain (had that too) like when I had a cranial nerve virus.  Oncologist agreed that facial problem could be world's smallest case of a viral palsy thing (like Bell's Palsy or Ramsey-Hunt syndrome)  We'll see what neurosurgeon thinks tomorrow . . . will update then

So far, so good overall.  I'm sure blood pressure will stabilize, and I can live with all the other little stuff if it doesn't get worse.

[DHJ]

         Thanks for the update. Sounds like your CK was a success. I have been postponing treatment for over 2 years and am considering CK. My blood pressure was 160/90 at the Docs the other day and I am on 4 pills to control BP. Not happy about that as I also enjoy running,basketball, and weight training. Docs are OK with working out but want me to watch the heavy weights. I think that the stress of life ie; brain tumor and teenagers is the cause of my BP problems.
         I hope your recovery continues to progress and you get back to training.Keep us posted.It matters to us . 
                                                                     God Bless   DJ                                                                     

[kathysjourney]

Really glad to find your update and that you're feeling good overall - it's great the balance isn't a big issue as you were really concerned about that! As you know, I'll still pre-treatment (soon ready for the funny farm), but from all I've read the facial stuff can be very minor and temporary and caused by the swelling, but you know that, too.

It'll be good for you to get back to some moderate exercise - bet you were happy to hear that. Hope those blood pressure issues calm down. I can't recall if they have tried a different medication for you recently. Sometimes it's trial and errror with that stuff.

Keep feeling better and better!! K

[sunfish]

Appointments #2 and #3 yesterday.

First, the neurosurgeon.  Very thorough, took lots of time to talk with me even though he was giving directions while talking with me to staff who were prepping one of his patients for surgery.  He was pleased with my progress so far.  He said he does not know why the procedure appeared to have precipitated some blood pressure problems.  He believes that it did, he just doesn't know why.  He said there is a lot to be learned about the results/side effects of CK.  He was Gamma Knife director at a center for over 10 years, and he says he's seen plenty of CK patients who had more trouble recovering from the procedure than some GK patients!  He says they will follow me closely - starting with a 3 month MRI to "make sure there's nothing grossly wrong in there."  How comforting! Ha!  I actually feel A-OK at this point.

Second, my primary care doctor.  She is puzzled by blood pressure problems, too.  She says maybe the CK just kicked off something that was going to happen anyhow (age, and my father had bp issues later in life too).  She doubled my bp meds, because my readings are still so-so.

I'm cleared to exercise - I ran/walked 6 miles today.  I'm still frustrated that now I have to be on bp meds.  Weird - rock solid 110/75 before CK, now often around 145/90.

[Tumbleweed]

Glad to hear you're doing well, sunfish, excepting the BP problem, of course. Your neurosurgeon sounds like a great doc -- honest and a straight talker.

Take care,
TW

[goinbatty]

It was great meeting you at the AN support meeting.  Hope you continue to do well!! 
Sandra