Author Topic: Do all watchers and waiters eventually get treatment-even if its years later?  (Read 15658 times)

NevadaKristen

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Re: Do all watchers and waiters eventually get treatment-even if its years later?
« Reply #30 on: September 28, 2011, 06:21:28 pm »
I, too, am watching and waiting and wondering if this is the right choice.  I will be 60 soon, and suspect surgery would be less traumatic on a younger person.  But I cannot wrap my head around the idea of surgery.  I have submitted my MRI to House Clinic for evaluation.  As far as I know, there are no doctors in Nevada who deal with this condition.  I was diagnosed 06/22/11 with a 13-14 mm mass.  Symptoms are hearing loss (moderate) and some tinnitus.  I am also very tired and don't know if that is a symptom of the tumor or of being worried.  It seems to be a choice between the devil you and the devil you don't know.

alabamajane

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Re: Do all watchers and waiters eventually get treatment-even if its years later?
« Reply #31 on: September 29, 2011, 07:29:15 am »
Hi Kristen and welcome to the "club" no one really wants to be a part of....but there are great people on this forum.
One thing you will notice is that every situation is different and everyone's response to it varies for differing reasons.. I was diagnosed in 2008 with AN and got very little info from Dr I was referred to.. very frustrating but I did not know how much I did not know... and what questions to ask.. Like you, here in Ala there are not too many Drs with considerable experience with these tumors,, or not that I was aware of anyway.. but travel is pretty much out of the question for personal reasons..
 
Everyone will tell you to start researching it..that too can be daunting.. the whole experience will be overwhelming at least at first it was for me.. it is still very scary. I am "your age" so I know what you are feeling concerning the timing..
 At first I believe I was in denial and did not WANT to do anything, then you move on to acceptance.. I have transitioned to surgery after these three years and about 5 MRIs (YUK) because symptoms have worsened for me.. I started with just tinnitus and mild hearing loss but have started getting pretty bad headaches and dizziness/ nausea and extreme fatigue at times.. also have numbness on tongue and some facial "tingling".. hard to describe
I did send my MRI out to House Clinic,, very valuable info and wonderful , knowledgable Dr.. It was more his consult, twice over the phone, that prompted me to move forward. My tumor is mostly in the CPA with small extension into the auditory canal and is pressing on my brain stem; hence the time to move forward with surgery. Radiation is not an option for me.. but is for some. Yours seems rather small ,, to me and I am not a Dr.... so you have time to decide and research Drs. and hospitals.. Take your time as these are usually slow growing and benign.. and with various consults,, you will come to a decision that is right for you.. some w&w for years with no further treatment needed and others need treatment right away due to location of tumor and symptoms.. you will feel better as you get more input from Drs. I think you will be happy with consult from House Clinic ,, they seem to have a wonderful reputation.. Good luck,, sorry to ramble,, but this is a very difficult time for those of us pre-treatment.. ..our  prayers and thoughts will be with you as you go forward on your journey...
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26