Author Topic: wonky head is worse  (Read 3863 times)

painter

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wonky head is worse
« on: April 30, 2010, 10:20:44 pm »
Hi everyone,
I know we all know about having a wonky head, and that it's been discussed a lot on the forum. So please bear with me for one more call for discussion.  I've been dealing with mine for 5 months now.  I started keeping a log to keep track of the level of severity from day to day, and I've noticed that the last few weeks are worse than before.  Has anyone experienced a regression of balance issues or wonky head? Thanks for indulging me, but this seems troubling at 5 month post op.
Tom

kenneth_k

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Re: wonky head is worse
« Reply #1 on: April 30, 2010, 10:48:47 pm »
Hi Tom.

Every regression feels troublesome and I'm sorry you have to deal with that in your recovery. I'm 1½ years post-op, and during the last couple of weeks I felt my balance worsen a lot. My guess is, we will meet ups and downs for a long period of time. Hope you will be up again soon.

Best regards, Kenneth

HeadCase2

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Re: wonky head is worse
« Reply #2 on: May 01, 2010, 10:09:58 am »
Hi Tom,
  I find  that seasonal allergies can seem to make balance a little worse.  Have your sinuses been a little more stuffed up than normal?
Regards,
 Rob
1.5 X 1.0 cm AN- left side
Retrosigmoid 2/9/06
Duke Univ. Hospital

GrogMeister of the PBW

Syl

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Re: wonky head is worse
« Reply #3 on: May 01, 2010, 11:53:35 am »
Tom:

There was a time when I felt my wonky-headedness was subsiding back in July of 2009 (1 year post-op). My head felt clear like it hadn't felt in a couple of years. Then I took a vacation involving plane travel. To this day, I have not recovered from the jetlag. In my pre-AN past, I've taken many vacations involving plane travel across time zones. It's not unusual for me to take up to a year to recover from the jet lag and for my body to get back to my normal sleep schedule. But now I have to deal with the wonky-headedness, too.

My balance, however, was not affected with the return of my wonky head. There are times of the day that my balance is better or worse than others, depending on how tired I am. But in general, I feel that my balance has improved.

Give it time. Five months is not a long time. At 5 months post-op I remember trying to take on more physical activity because I thought I felt well enough or strong enough to do it. Payback was a *****. I did feel I had taken a step backwards afterwards. My Dr. had warned me about this. She said that my progress graph would take a dip on these ocassions, but over the long term, the trend of the graph would be upward and forward.

Syl

1.5cm AN rt side; Retrosig June 16, 2008; preserved facial and hearing nerves;
FINALLY FREE OF CHRONIC HEADACHES 4.5 years post-op!!!!!!!
Drs. Kato, Blumenfeld, and Cheung.

painter

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Re: wonky head is worse
« Reply #4 on: May 01, 2010, 12:14:30 pm »
Rob,
You are right on the money with this one.  My sinuses have a real problem lately, going on antibiotics and steroids in the hopes of knocking out a sinus infection.  But to no avail, so I was wondering if allergies might be playing a part in this.  Bad sinuses on top of a wonky head really make life interesting.
And Syl, thanks for the input.  I just returned from a round trip cross country plane trip that wiped me out for three days when I got home.  However, I was noticing this backsliding a little before the trip.  I hope you get over the je lag feeling you have. Have you taken any additional plane trips since that one?
Tom

cin605

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Re: wonky head is worse
« Reply #5 on: May 01, 2010, 01:14:00 pm »
I am almost 2 years post op and the last two or three weeks(lost counnt)I fell like i have been wlking aroud with a wet towel wrapped around my head.HEAVY>
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

painter

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Re: wonky head is worse
« Reply #6 on: May 05, 2010, 09:22:26 am »
Donnalyn,
Thanks so much for all the useful tips.  Believe me, I'm taking every suggestion I can and trying them to sort out what helps and what doesn't.  I'm grateful for this forum, and can't imagine where I'd be if I had to figure out everything on my own. (since there is little direction from my doctors)  I'll keep you posted on how these suggestions work, I'm sure it will come up again in the forum by yet another sufferer of the wonkyhead.
Thanks to you all,
Tom

Syl

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Re: wonky head is worse
« Reply #7 on: May 05, 2010, 07:02:43 pm »

And Syl, thanks for the input.  I just returned from a round trip cross country plane trip that wiped me out for three days when I got home.  However, I was noticing this backsliding a little before the trip.  I hope you get over the je lag feeling you have. Have you taken any additional plane trips since that one?

Nope, I haven't taken any more plane trips since that one.

Syl
1.5cm AN rt side; Retrosig June 16, 2008; preserved facial and hearing nerves;
FINALLY FREE OF CHRONIC HEADACHES 4.5 years post-op!!!!!!!
Drs. Kato, Blumenfeld, and Cheung.

pjb

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Re: wonky head is worse
« Reply #8 on: May 07, 2010, 12:32:50 pm »
I too have still have bad days and then really bad days we just have to be aware that we will never be the same. Sometimes I try to move like I use to and then realize I have to take it slow now and think before I attempt anything just a new way of life. But we still have to remember to count our blessings that these are benign and grateful in having this type of tumor and that is what we were dealth with and now just have to adapt to it.

Best Wishes,

Pat
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.