Author Topic: Is/was your dizziness constant or does it vary in intensity?  (Read 4100 times)

homebody

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Hello fellow AN'ers!

I have an 8mm AN that was treated with FSR in June 2000.  I have been totally asymptomatic for the AN both pre- and post-treatment.  My follow-up MRI's and hearing tests show no growth or hearing loss.

I had surgery to remove my thyroid (papillary carcinoma) on July 6 of this year, and I've been dizzy ever since.  It is pretty constant- hasn't gotten worse or better over the last three weeks.  It feels kind of like I am slightly drunk - not a "spinny" but more a "swimmy" feeling in my head.  Sometimes it intensifies if I tilt my head down or sideways.

My thyroid doc suspects that it's caused by my thyroid replacement hormones, but we've tried all sorts of different dosages including going off of it entirely and my symptoms haven't changed.

I am wondering if my AN might be causing it?  I know everyone's experiences are different, but I would like to hear about your dizzy symptoms to compare notes. 

Thanks,

Sally

amymeri

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Re: Is/was your dizziness constant or does it vary in intensity?
« Reply #1 on: July 30, 2006, 01:04:44 pm »
I was/am on thyroid hormone for 15 years without problems.

Had a 4 cm AN removed in April.  Ever since have had that swimmy headed feeling with varying intensity.  Notice it the most when I am driving or doing something active and least when I am just sitting around.  It can be okay some days and awful other days and vary from hour to hour as well.  It doesn't stop me from doing anything but is increasingly bothersome as I get better in other ways and stands out more in comparison.

Amy

4 cm right AN removed restrosigmoid 4/13/06
Partial facial paralysis, SSD and trigeminal numbness for now

nannettesea

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Re: Is/was your dizziness constant or does it vary in intensity?
« Reply #2 on: July 30, 2006, 01:59:21 pm »
Sally,
I think it's very possible AN is causing it.  That was my primary symptom prior to surgery, along with slight hearing loss.  Mine is still constant, totally get that "swimming" feeling.  After so many months, I'm on drugs to help it.  I also have head pressure.

Nan
1.7cm x 1.4cm x .8cm, right ear
Trans-lab approach
Dr. Jay Rubinstein, U of WA
8/29/05

Kilroy1976

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Re: Is/was your dizziness constant or does it vary in intensity?
« Reply #3 on: July 30, 2006, 02:38:07 pm »
Mine varies greatly. Can go from almost normal to "the world has tumbled out of orbit" in seconds. Looking up is a sure-fire way to trigger it.
1.8cm AN
Linac
December 13, 2005
Shands Hospital--University of Florida

russ

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Re: Is/was your dizziness constant or does it vary in intensity?
« Reply #4 on: July 30, 2006, 04:19:34 pm »
Hi Sally
  When was the last MRI? It should have been within the last year and even better, 6 months.
  Thyroid? Seems if blood levels are normal with replacement therapy, this is probably not the culprit.
  I have read of delayed hearing loss due to irradiation, but not onset dizziness of the type you describe. This 'may' indicate regrowth. *It doesn't take much regrowth if in the Inner Auditory canal ( IAC ).
   Russ

Crazycat

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Re: Is/was your dizziness constant or does it vary in intensity?
« Reply #5 on: July 30, 2006, 04:31:21 pm »
Has it been determined that csf ( spinal fluid) build-up or hydrocephalus is not the cause of this constant swimming and fullness?
I know it had a lot to do with my condition!

                Paul
5cm x 5cm left-side A.N. partially removed via Middle Fossa 9/21/2005 @ Mass General. 
Compounded by hydrocephalus. Shunt installed 8/10/2005.
Dr. Fred Barker - Neurosurgeon and Dr. Michael McKenna - Neurotologist.

tony

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Re: Is/was your dizziness constant or does it vary in intensity?
« Reply #6 on: July 31, 2006, 01:30:21 am »
My Thyroid failed some 5 years back - the AN and issues are rather more recent
The thyroid medication too much/not enough does not seem to affect the dizzy
issues. The only real constants for dizzyness  are Too dark, Fatigue, Sharp slopes, Blood sugar, Body fluids and Booze !. Interestingly the fatigue issue can often be resovled with a short 5-10 min cat-nap with eyes closed - seems to reset the mechanism somehow.
Best regards
Tony

ppearl214

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Re: Is/was your dizziness constant or does it vary in intensity?
« Reply #7 on: July 31, 2006, 05:10:52 am »
HI Sally and welcome.

I had the left 1/2 of my thyroid removed back in '98. Had recent TH blood work done to make sure remaining 1/2 is working ok... it is.  Never been on thyroid meds due to 1/2 remaining.

My dizziness began post CK.  My understanding is that if the hearing/balance nerve is touched in any way, there are hypersignals that the nerve experiences, thus, helping to cause the dizziness (please note the word "helping" as other reasons can cause it as well). I am currently on low dose valium (2mg Valium/3x day) and it has helped was was very frequent dizziness and bring it back to a more tolerable level.  But, that's just me....

Phyllis
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Kathleen_Mc

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Re: Is/was your dizziness constant or does it vary in intensity?
« Reply #8 on: July 31, 2006, 07:46:43 am »
Sally: I would been wanting to have an MRI to check on the status of the AN before spending a long time ajusing the thyriod meds, just be to sure it is not the AN that is problem.....just in case it is the sooner found out the better.
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

BevM

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Re: Is/was your dizziness constant or does it vary in intensity?
« Reply #9 on: July 31, 2006, 08:13:10 am »
I have the same swimmy feeling you describe and have not yet had treatment for the AN which is 9.5mm.  That feeling plus loss of hearing in that ear is was I originally went to the doctor for.  I am currently seeing a physical therapist and doing exercises to "retrain" the brain.  I haven't been doing this long enough to tell you it is working.  But you might want to check out PT.  I am also going to start acupunture to see if that will help.  I wonder if anyone has tried acupunture for symtom relief.

Bev