Experiencing/Imagining Additional Symptoms

[vsfunkhouser]

In June I presented with a significant loss of hearing, tinnitus, and fullness in the left ear.  I had an audiogram, ENT visit, MRI, CT and balance testing - have met with the neurotologist and have an appointment on August 8 with a neurosurgeon... surgery on September 1.  Many of you have replied to my posts and I appreciate the answers to my questions, the additional information you have provided and encouragement that you have offered as I walk the AN walk.  I feel like I am being a bit of a whiner but I know that it is here that I can get the answers I need.

I recently inquired about fatigue and learned that it is just part of the experience but I seem to be experiencing some dizziness and nausea and it seems to be occurring more frequently.  I seem to have the dizzy/nausea feeling when I drive to work in the a.m. ~ almost like a slight case of motion sickness and it often goes away once I get out of the car.  Last weekend we went out for dinner and the restaurant seemed to have strange lighting (rather dark with can lighting).  I became extremely dizzy and nauseated and was unable to eat.  We left the restaurant but it took a couple hours for the feeling to subside.

At first I thought this feeling was stress but now I'm not sure and since my surgery has been scheduled, I'm not sure that it matters.  bI am having some difficulty with sleeping and I am sure that adds to the symptoms.  It makes me feel rather unstable.  I thought of calling my doctor but I feel like I might be jumping to conclusions or over reacting. 

I have more good days than bad and have been able to stay positive most of the time but sometimes I just don't want to get out of bed... I don't want the day to begin because I know my thought process goes right to the tumor, to the surgery, to the recovery, and it is exhausting! 

Well here I am again... questioning, complaining and feeling sorry for myself!!!!

Thank you for listening! 

[Kathleen_Mc]

You're entitled to complain, question and feel sorry for yourself  (and even whine) and this is a good place to vent.
Fatigue could be caused by the tumor itself however likely it's the stress of living with a tumor and impending surgery. Go figure, you have a brain tumor and you're stressed! Likely the sleep you are getting isn't that "restful" and so......you're fatigued. Go with it, if you can nap when you can and that might help.....power naps, my best friend!
Dizziness and nausea go together, dizziness will cause nausea, and certainly some things we do make it worse......movement highly likely to make it worse hence the feeling sick when driving.
Being in a darkened room is diminishing you sense of vision which is trying to compensate for the balance issue and it can't in the dark so you have more of a challenge to stay balanced and likely therefor cause the nausea to increase.
BAD DAYS, don't wanna get out of bed? Been there, still go there from time to time but "life" doesn't let me stay there, it will get better over time
Remember Time HEALS!
take care, Kathleen
I've experienced all of this, over time youwill learn to ignore such things and just focus on enjoying yourself

[CHD63]

Victoria .....

I took time to go back and look over your posts.  Since your ENG test indicated your balance nerves are still functioning, my guess (and I'm not a doctor) is the tumor is now beginning to press on the AN side nerve, which is sending your brain into a tailspin trying to figure out the mixed signals.  After surgery, you will probably experience a wild amusement park ride feeling.  The good part of that is ..... if you make yourself get out of bed post-op and walk, walk, walk, the brain normally compensates very quickly by using totally the remaining good side.

The fatigue could also be from you having to process much more information, deal with the emotional distress, and physically already beginning to compensate for balance issues.  Quite normal, I'd say.

A month from Monday will fly by.  I would spend most of the time having fun with my friends and family.  You may also want to tie up any loose ends of unfinished projects that could bug you afterwards.  Also, preparing meals to freeze or fix things that will make it a bit easier post-op help to fill the time, as well.  Anything to keep busy helps keep your mind off it.

My husband was hovering before my first surgery 3 1/2 years ago and was very concerned I would need someone with me when he had to return to work 10 days post-op.  He asked our daughter-in-law if she and our 3 year old granddaughter if they could come stay with me for a week so they did.  However, as it turned out, I would have been perfectly OK ...... walking very carefully, but able to totally take care of myself.  It was nice to have someone else fix the meals, but I could have if needed.

Best thoughts and many, many prayers.  My church friends and prayers from all across the country were essential to my well-being.

Clarice

[james e]

I'm sure you have stress, but your AN is the reason you are dizzy. I had horrible dizzy spells, and even had to be in a wheel chair because I could not walk without throwing up. My eyes and my ears could not agree on what was vertical and horizontal. The lights at your dinner confused your eyes, and your ears should have balanced you, but one of your ears is not working correctly because of the tumor...so you get dizzy. Same problem driving...you are turning your head and your eyes left and right, up and down, and your AN ear is not sending a corresponding report to your brain that your eyes are, so you get dizzy.

If you close your eyes with your feet together, you will probably start to fall, because your AN ear is confusing your brain. Vertical??Horizontal??? Brain is confused!!! Open your eyes, and all of a sudden you can balance because your eyes are balancing you.  This is very exhausting, and you are stressed, and full of worry. I will assure you that after you get treated, you need to get physical therapy. Two things will happen. Your good ear will compensate for the loss of your AN ear, and PT will make  this happen faster. Number two, your life will return to normal. Slow recovery, but you will be "normal" again. Complain all you want, and we will listen to every word, keep patting you on the back, and pulling you along.

James

[alabamajane]

WOW this forum is SO helpful even when you least expect it to apply to you!

I am so glad you posted about these feelings because I have had exactly the same dizziness/nausea/and eye problems that you mention and did not know the relationship till now.. thanks to ALL who have explained it!
Makes sense though,, and really enlightening.. so see,, we all think we are "whining" and complaining and really we are just helping each other realize that our symptoms are not "just in our head"... ha ha.... makes my day!!

[Sue]

Hi!    Please go over to the Balance topic and look at the fifth posting.  This references an article written about the balance system and how it works.  It will explain all of your symptoms...

In the time it took for me to go to a dr in January, finally see a neurologist the first of March ( in retrospect wish I hadn't waited that long, but probably wouldn't have made any difference anyway)' and have treatment in April, I had the same wonky headed thing as you, although I didn't feel sick to my stomach.  Driving upsets the equilibrium, and actually I did better driving than being a passenger.

I wish this article would be copied and given to every AN patient from their dr.  It would help everyone to understand how the balance system affects so much.  It would answer a lot of questions about symptoms, as so many are connected to this one problem, a compromised balance issue.

[vsfunkhouser]

I can't begin to tell you how good it is to have all of you who have had the experience as a sounding board...   I appreciate the wisdom and knowledge that I am lacking in regard to the AN.  I knew that dizziness was a symptom but I wasn't having that sypmtom when I first saw the doctor so I wasn't sure if it was real or if my silly little brain was fabricating it.

For several years I thought that I was having migraine headaches and they were relaed to menopause/stress... they would always wake me in the early morning and seem to last much of the day, sometimes I would have nausea.  In the last year they have been more frequent... I told my GP about them and he asked me if I could relate them to anything and I couldn't.  He told me to try Excedrin Migraine and it helped some!  Today I read that headaches such as that can also be a symptom. 

I've named my tumor "Bob"... remember that movie "what about bob"... the annoying patient.  Well I am finding "Bob" the tumor rather annoying and I am anxious to have him removed.  Just another coping mechinism... I figured we might as well joke about it cause it basically is what it is!!!!

Kathleen, Clarice, Jim and Sue... both your encouragement and informationn regarding the dizziness is so helpful.  The symptoms make so much more sense and I plan to look at the Balance Topic also.  I hope you all realize what a difference each one of you make to those of us who are just beginning our journey!

And "alabamajane"... wondering if you have had your procedure or if you too are still deciding on treatment.

Once again... thank you for your posts ~ this forum and the people who take the time to pass on information are performing such a huge ministry!  God Bless you for your willingness to share.  Sincerely... Victoria

[alabamajane]

Victoria.
No I have not had any  treatment yet. I am awaiting appt. with second opinion Dr at UAB in Birmingham AL. My records have been sent. I have had several recommendations about Dr Winfield Fisher,, so will see..
the info from this forum is so helpful though.. the decision as to WHO is so hard when you are from an area that does not have many "seasoned" professionals... will keep you all posted though.

[luvzmutt]

Victoria,

It's funny that you named your AN "Bob" because of that movie.  That is one of my favorite movies!  My 19 year old daughter named my AN "Justin" after Justin Bieber, because it is annoying and we just want it to go away (it was either that or Miley).

~leslie

[Kathleen_Mc]

My orginal tumor was named Tina.....Tina the Tumor! Funny how so many of us name our tumors!
(I just thought it was me and my twisted humor at work)

[vsfunkhouser]

I think light-heartedness and humor helps us cope!  I never thought that I could laugh about a brain tumor but "Bob" has been the brunt of many jokes.  And I know that this is serious  business but it is just been one more way to stay positive.  This forum has been another... teaching me about life after AN.  Thanks for sharing your tumor names... my husband liked "justin" as he thinks justin is annoying also (we have a 13 year old granddaughter). And Tina the Tumor is so fitting.  LOL  Thanks, everyone!

[gringadactyl]

Mine was named Q-bert.  I had a contest among friends.   

[LisaP]

Hi,

My children named my tumor "BillyJean" after the Michael Jackson Song.  Why?  I don't know, but when I do not feel well,  they will say....BillyJean is acting up.    Yes, humor does help.   

LisaP

[alabamajane]

Victoria,
good luck with your surgery this week and keep us posted on the "other side".... we will be praying for you!

I have had my appt. with new Dr. and am awaiting the appt. for my surgery in late Sept. or early Oct.... stressful waiting but somewhat comforting to know I have progressed on from w&w to surgery so I can maybe relieve some symptoms and get on with life!! We had a support group meeting yesterday and it was helpful to be able to talk with everyone especially a man that had used same Drs...  again, good luck I am sure all will go well....

[vsfunkhouser]

 Alabamajane, Thank you for your thoughts and prayers.  On August 8th I went for the consultation with the Neurosurgeon on my surgical team and he highly recommended that I consult with a facility that performed the Perfexion Gamma Knife Radiosurgery. He suggested that he actually thought it might be the better option for me.  I left the appointment feeling rather confused but did take his advice.  Just as well as I later found out the Neurotologist had cancelled my surgery (without informing me) to schedule another person on September 1st.  I now am scheduled at the Cleveland Clinic on September 2nd for a GK  consultation.  Cleveland also perfomrs surgery so I am guessing that they will guide me in the appropriate direction.  I understand that it is ultimately my decision but it will be good to be better informed.  I will keep you in my prayers with your upcoming surgery!  Victoria