Frustrating: In for the long haul

[sunfish]

Hmmm . . . where to post this?  I think this area of the forum is potentially less read than others.

I'm not doing so hot.  I'll try to keep my story short(ish).  Was very active and athletic for my age before AN.  Did full Ironman Florida in 2008, and many other endurance type events in 2009.  Had CK for 1.4 cm AN in mid-March.  Had always had fairly low blood pressure.  Pressure shot up week of treatment (steroids? we said).  Went back down a little, but never nearly to where it was.  Now I'm on bp meds, and if I miss a dose, bp goes up right away.  Early May, I started having vision problems - mostly shadowy, floater type stuff in both eyes.  3 month followup MRI shows "no edema near brainstem," and "devascularization." Opthalmologist says eyes are fine (not retinal detachment), it's neurological.  Referred to neurologist by treating CK neurosurgeon.  He says "cortical excitability," maybe take migraine meds to help.  First, I want to find out if bp meds might be causing this, so I go back to primary care doc.  But I've been having increasing disequilibrium, just short of vertigo.   Tuesday, I nearly pass out in doctor's office after a couple deep breaths. Yesterday, I go home from work early due to dizziness.  Waiting for blood/urine lab results.  Doc says I could have electrolyte imbalance.

I'm very frustrated with all this.  I've been in a gradual, downward slide since CK in March.  No one seems to know why.  Sometimes I think it's just part of the territory.  After all, one can expect disequilibrium, etc. after CK. Sometimes I think maybe I've got some sort of significant neuro problem, and neurosurgeon is just covering his a&& through referral to his buddy. 

I'm starting to get worried about the implications of these ongoing problems for my job, primarily.  I'm a psychologist in federal prison, and I need to be able to walk and chew gum at the same time for the next 6 years until I retire!  I'm just on the edge of having to re-engineer my entire life around my health (even more than I already have).  I can't hardly walk around the block, much less run or ride my bike.  I'm just frustrated, not really depressed.  Everything else in my life is going SO well.  Just venting!

[kiwi]

Hi Sunfish

I'm sorry to hear about your problems after your CK.  I had surgery the day before you and remember thinking at the time...."I wish I could have had your CK option instead of surgery."  I have kept an interest in your recovery over the months to see the differences and it definately has been a rocky road for both of us as it seems.  I know it probably sounds a bit lame to say hang in there but I really hope things get better for you soon. Big hug from NZ.

Jacqui

[Jim Scott]

Hi, Sunfish ~

You have good reason to be frustrated and I'm sorry your recovery is proving to be difficult  I'm sure things will improve eventually - they usually do - but right now, it is tough for you.  Frankly, we hate to see that, but, as you pointed out, tough recoveries are part of the territory, it seems.  These forums are laced with posts from AN patients that struggled with their recovery to the point of frustration and even depression but finally got better (if not 'perfect') and were as delighted to tell us about it as we were thrilled to read about their arduous but ultimately rewarding journey back to normalcy.   I expect you'll be one of those folks.  I hope it's soon.  Try to remain determined to recover and never forget - we're rooting for you! 

Jim  

[nanramone]

Sorry Sunfish - sorry to hear things are so rough. I had a good week this past week and it was a relief. I also have many odd unexpected symptoms post radiation. It is certainly a struggle at times, dealing with the imbalance problems. I go to rehab each week and am seeing improvement.


Still I agree with Jim that eventually this will all level out and I'll be doing great. You will too! It hasn't been very long since you had radiation...I hope you can enjoy some good days soon~

Nancy

[Anomar11]

Hi Sunfish,

I had CK 11/08.  No significant side effects until March '09 when I had a significant vertigo episode.  Had to do a 12 day course of decadron.  Since that episode, most days I have balance, swimmy head, wonky head issues to a degree, some days quite bad.  I work in a building with long halls, and navigating some days is a challenge.  My daughter goes to college 8 hrs away, and I don't trust myself yet driving that far alone.   Starting about Dec, I started noticing more good than bad days and that has continued to be the case, or maybe I've acclimated a little more.  The good days do continue to be more frequent.  From what I understand, this can be the case with some.  I know you have more issues than just balance, but relatively speaking you're still early in the game, and I believe it can and will get better.  No one wants to hear it could last many months, but try to take one day at a time.  For me walking regularly helps, even if some days its more like a slower stagger.

Mona

[b91221b]

Hi, Sunfish...

I'm so sorry that you are having issues post-CK....I, too, am struggling with balance issues, headaches, increased tinnitus, etc., etc.  It seems that all symptoms are more noticeable when I am tired or stressed. 

My 1-yr. post-CK MRI is scheduled for October of this year, and I'm really anxious to see if the trigiminal nerve was somehow affected during treatment.  There is a nagging ache in my jaw on the AN side.  Reading the responses of other AN friends, it's helpful to know that we are all coping with symptoms...in the hopes that they will subside (disappear!) one day soon.  When things get really rough, the AN Forum Friends have been my biggest support!  They (we) all understand!  One day (step) at a time...we'll make it through.  The success stories from others are MOST encouraging!

Barbara

[KimLyle]

I am sorry about how u are feel.
I just had surgery 5months ago and understand you need to get back into shap the way you were
I ran in college but i had to stop my senior year because i had to have the surgery
its been hard not to be the same shap i was.. I use to run every day and it was such a big part of my life soo i understand why it fustrates you soo much
but just remeber if you did iron mans and stuff you know how not to give up and you seem like you have determination and you will succeed at the end, its just gonna be a long road
hope the best for you

[HeadCase2]

Hello Sunfish,
   From "listening" to peoples experiences on this forum, it is not unusual for CK or GK AN patients to experience more symptoms around the 6 month time frame after treatmant.  It's possible that this may be related to AN swelling from treatment, on its way to tumor necrosis, and hopefully shrinkage.
  The vision floaters may be scintillating scotoma.  I have heard about it as a less freguent side affect from a few people with AN.  And I experienced about 5 of these episodes before AN treatment, once 2 weeks after surgery, and none since.  Perhaps post CK AN swelling is pressing on vision related structures and will resolve with more time.  
http://en.wikipedia.org/wiki/Scintillating_scotoma
  Hang in there, CK/GK patients can experience more symtoms about 6 mjonths after treatment.  And these symptoms ususally improve or resolve with more time.
  Regards,
      Rob

[sunfish]

Gosh, thanks for all the supportive responses!  Update - sounds like I have just plain old wonky-headedness.  It has been coming and going over the past 2 weeks.  My blood work came back normal.  Scintillating scotoma - I've had this on and off my whole adult life, and my vision problems are not really like that.  I'm getting an appointment with neuro-otologist to see if I have abnormal eye movements, and to get some measurement of my balance/vestibular situation.

I think from reading this forum that I do need more rest.  I tend to get up way early to exercise.

I started this thread on kind of a "down" day.  I've been more upbeat over the past week.  I think some of my frustration is the realization that this isn't going to go away overnight.  My primary care doc told me this week she really believes my high blood pressure (which I didn't have before CK) is permanent

One step at a time, one day at a time . . .

[HeadCase2]

Sunfish,
  If you're interested, there was a graph of post radiation AN swelling and shrinkage through time in another post, see http://anausa.org/forum/index.php?topic=6493.msg63049#msg63049

Regards,
  Rob