Author Topic: Freaking out  (Read 8999 times)

Dawn

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Re: Freaking out
« Reply #15 on: January 06, 2009, 11:36:28 pm »
Hi Brian

Welcome...I am very new here too and have found it very helpful....

I too am a W&W and its kinda driving me crazy....

Anyway.  I too find I don't know if it is better to remove it while its small and hope for the least amount of complications afterwards or should I wait until it gets bigger and causes problems.  My hearing is 100% perfect at this time and I just got my results from my ENG test. It shows a 35% deficit of my vestibular nerve (which explains the balance issues).  Once I was diagnosed and realized that it causes problems with balance I started doing a lot of balance training exercises and am starting to see a difference this week.  You can ask your doc to refer you to a Vestibular Therapist (it is a speciality in the field of Physical Therapy)

My problems are nauseasness.  If I do too much I get nauseas, sometimes when i drive especially at night I get nauseaus.  I like to describe it as constantly feeling car sick.  All and all it is tolerable but I am undecided about the surgery.

So my plan is....I have an MRI scheduled for March 3rd then will see the doc right after that and see if there is any growth and how I'm feeling at that time...in the meantime, I am sending my test results the the House Clinic in LA and will be setting up appt with MD in NYC for a 3rd and 4th opinion.

Good luck to you and if your freaking out just know it is normal and there are a bunch of us out there freaking out with you....lol...hang in there

Dawn
Diagnosed 12/08...4mm Left AN in IAC...Wait and Watch for now...Next MRI scheduled for 8/09 Doctors not sure if its AN, Lipoma or Hemangioma????

Also diagnosed with Chiari I Malformation - looking into options for that

fbarbera

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Re: Freaking out
« Reply #16 on: January 09, 2009, 10:06:31 am »
Hi Brian,

My AN was 2.5 by the time it was discovered in July 2007.  Amazingly, I was essentially symptom free (other than minor hearing loss that I had astutely attributed to other people not speaking clearly enough) until around March 2007, then suddenly the symptoms began to emerge.  Due to its size, I needed to be treated and I saw several doctors and did a bunch of internet research to decide whether to have surgery, GK or CK.  I detail all of this, and how I came to my decision to go with CK, in my website below (in my signature line).

When I went in for CK, basically what I was told is that my symptoms were very unlikely to get worse, there was a reasonable chance that they would improve, and there was a reasonable chance that the symptoms I had on the day of treatment would remain.  In other words, I had to be prepared to live with my symptoms as they existed on the day of treatment.  At the time of my treatment, I had some very minor hearing loss, some numbness around my right lip, and dizzy spells.  As it happens, my hearing has remained unchanged, the numbness has gone away and the dizziness has greatly subsided to the point where it does not significantly impact my life or the activities I'm capable of participating in.  There were months of very bumpy patches, but I'm now doing fine.  (The "post-treatment" section of my site recounts my progression after CK treatment.)

I'm of two minds about W&W.  On the one hand, I think it makes a lot of sense to delay the trauma of treatment as long as possible and just enjoy life as it is.  But on the other hand, your pre-treatment symptoms may impact your post-treatment quality of life, and delay in treatment may result in the onset of new pre-treatment symptoms.  After all, most people W&W until they become symptomatic.  There is also the risk of continued, irreversible deterioration in hearing. 

I raise these issues as things you should explore carefully with your doctors.  My main suggestion is go see a few neurosurgeons now--preferably ones trained in both surgery and GK/CK, so you get all perspectives on treatments and your current situation.  I agree too that perhaps deciding on a treatment now might help take a load off.

Best wishes,

Francesco



     


« Last Edit: January 09, 2009, 10:12:37 am by fbarbera »

Mickey

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Re: Freaking out
« Reply #17 on: January 09, 2009, 10:29:28 am »
Nicely put! I agree and disagree. That all depends on your situation. If your 60 or better with a AN around 1 cm range with manageable symptoms it really pays to W+W. Many studies have concluded that AN`s can reach their maturity and not need intervention. As far as loss of hearing as a normal person ages things like that are a common occurance. With normal MRI monitoring there isn`t much to loose. In a younger person I do agree that maybe it would be best to "nip it in the bud" Much better chance of recovering with just to much time to W+W. In all cases it`s individual and hope all do their homework and make the best decision for themselves. With God`s help all will be fine. Mickey