Author Topic: new to support group  (Read 2881 times)

Maude

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new to support group
« on: May 27, 2007, 06:54:14 am »
I was diagnosed with AN in my right ear in 2000 and have been watching and waiting since then. I am now 58, my AN is now 9mm x 5 mm (I know it is small as things go), I am seeing my specialist from the Cleveland Clinic next week for my second visit since 2000. I am nervous. Each year, the waiting and the tests become more emotionally difficult for me. I am now 58 years old and have lots of other medical issues (diabetes, osteoporsis, spinal stenosis, high blood pressure, acid reflux, liver problems, etc).  I do experience constant ringing in my ears (sometimes I also hear little tiny tin-like musical sounds kind of like a music box and other times I hear a loud roar like a train), I now have no sense of direction for sound (when I am at work, I can't hear if someone moves from one side of me to the other or if someone comes in my office),  and I struggle with vertigo most of the time.


I am worried if I keep waiting, will I wait beyond a time that my body can heal effectively. Also, I have a new twist, my TMJ in my left ear has now degenerated the bones and is causing a hearing problem in that ear as well. My general physician thinks I may need surgery on both, which is why I was sent to the specialist this time.  I am confused on the types of treatments available. I have read the literature, but I am getting confused. I am debating if it is better to have the surgery now or wait. I am concerned about the post-surgery, the literature is quite daunting. Yet, the waiting year after year is nerve racking (no pun intended). I know my AN is small, for which I am grateful. I am not sure if it is easier to take care of it now or wait until it is bigger.

I am glad I just found this support group. I hope my meaderings are making sense.

ppearl214

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Re: new to support group
« Reply #1 on: May 27, 2007, 09:34:09 pm »
Hello Maude and welcome. Good to see you here and participating.

Yes, you are correct.  Based on the current measurements of your AN, it is deemed small, which does leave you time for options research.  As it may be growing minimally, no action may need to be taken yet, you are doing the right thing by doing your research.  The Cleveland Clinic is world-renowned and you are in great hands there.  As many of us have other medical issues that seem to compound our AN journey, the only suggestion I can make is to take a deep breath. ... read the Microsurgical and Radiation forums with a good cup of tea (or your favorite beverage) and research, research, research.  Having worn a night guard in the past for TMJ, that may help allieviate any pain/discomfort you may be having in your jaw.  Just a thought.

Please read carefully and if a particular topic is of interest to you, please do not hesitate to ask re: specifics of certain protocols. There are many of us here that are glad to help.

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

Maude

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Re: new to support group
« Reply #2 on: May 29, 2007, 07:14:51 am »
Phyl,
I want to thank you for your kind response to my first post. I had not realized how much it meant to be part of this forum until I received a reply. I thought I was doing fine on my own, but when I read your reply, tears swelled up in my eyes. Thank you for your help, support, and gentleness. I hope to learn enough to become a support to others. Right now, I am on the receiving end. But I plan to follow your model and return to others what you have given to me. Thanks to you and everyone on this great site.

ppearl214

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Re: new to support group
« Reply #3 on: May 29, 2007, 07:21:16 am »
Maude, not only are you going to be fine... but I really look forward to you sharing here on the site... that is why we are here... to support, give our good ears, a shoulder if needed, a bad joke or giggle if needed and most of all... remind you that you are certainly not alone in this AN journey.  Many of us have already walked that mile or 4 in your shoes and we're here to help.

Hang in there! :)

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

FlyersFan68

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Re: new to support group
« Reply #4 on: May 29, 2007, 02:00:56 pm »
The night guard really does help. I had mine for a month now everything is feeling better. They run around $500.00 and insurance paid half. I think it's a great way to alleviate pain & pressure if it's not to late.

pearchica

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Re: new to support group
« Reply #5 on: May 29, 2007, 06:34:57 pm »
Hi Maude: sorry to welcome you to the group!  I had my AN radiated at Stanford as I really did not want to have surgery....(I did have three surgical opinions prior to reaching guy at Stanford who was both a surgeon and a radio-surgeon). Having said that, you will find others on the website who had surgery who are doing really well..(FlyerFan68 comes to mind).. I found that during research I had to limit myself to an hour or two a day just to get a handle on it all and that by taking small steps, it all became clearer.  And yeah my mom has spinal stenosis.. it's been really bothering her lately...so I feel bad for you- you definately have your plate full.  Take care of yourself- please know that you can ask a TON of questions and we will do our best to answer... God Bless, Annie
Annie MMM MY Shwannoma (sung to the son My Sharona by the Knack-1979)
I have a TUMAH (Arnold Schwarzenegger accent) 2.4 x 2.2 x 1.9CM. CK Treatment 2/7-2/9/07, Stanford- Dr. Stephen Chang, Dr. Scott Soltys

Maude

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Re: new to support group
« Reply #6 on: June 01, 2007, 06:22:57 am »
I want to thank everyone for their suport as I prepared for my visit yesterday. I am glad to report that I will be continuing on a wait and watch regiment; I don't  need another MRI and check up for two years. My good ear hearing loss is minimal and appears the TMJ is deciding to flare up from time to time and mock menieres, which adds to my dizziness. The doctor for a while yesterday thought I also had menieres and was setting out a 3 stage game plan on time of the AN game plan....then he listened to me for a moment (that ws refreshing) and did some extra tests. Voila...that game plan was erased. Regardless, the TMJ will be addressed locally (maybe with a mouth piece, etc) and the AN will be watched like a baby in the womb.. too little to take out now I just have to wait for it to be just big enough but not too big.
I am humbled by your support and that my "baby" is barely worth including in with the "big boys" out there. Yet, you have all made me feel so welcomed and did not diminish my fears, concerns, and desire to learn more so I could make educated, informed decisions.

Thank you most of all for the compassion.