Recent Posts

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91
AN Issues / Re: Newly Diagnosed, Confused, Scared, All of the above
« Last post by MarlaB on October 01, 2024, 09:40:50 pm »
Welcome to the club that NOBODY wants to belong to. I'm so glad you have found us, (how did you find us so fast?) Here you will find support, encouragement, and a wonderful community of new friends.

To respond directly to your concerns, I, for one was EXACTLY in the same headspace as you. That was 15 years ago and life is good.

I hope you have reached out to the ANA to sign up for a temporary membership. You'll have access to more information than you know you need. Also, ANA has support groups all over the country, some are virtual, others in person. All of them are listed on the website.

And finally, Remember to breathe, seek professional help for your anxiety if necessary, and know that you are not alone.

Marla B.
Forum Admin
92
AN Issues / Newly Diagnosed, Confused, Scared, All of the above
« Last post by BrokedownPalace on October 01, 2024, 06:27:32 pm »
Hi all,

I had my MRI today due to hearing loss for the last 7 years. No other symptoms are present aside from Tinnitus. I assumed that the loss was from going to concerts without ear protection, but lo and behold I have a 2cm AN on the left side.

I'm terrified of the possibilities of surgery, managing my life, work, losing function in my face, and everything else. My anxiety is essentially through the roof at the moment.

Having a very hard time functioning right now and I dont even know what's next.

Mainly just posting this to vent and get feedback from people who have been there before. Thank you all.
93
Post-Treatment / Re: GK on 9/17 - extreme vertigo in 48 hrs
« Last post by GMDizzyndeaf2 on October 01, 2024, 01:11:45 pm »
 The fullness, stinging pain and deafness occurred after Gamma Knife for me. Beforehand, I only had slight high frequency hearing loss and tinnitus in AN side(left).
I am hoping that it’s caused by inflammation andby the end of my steroid taper it will fade away. Trying to think positively!
Thanks for your update.
94
AN Issues / Dizziness
« Last post by ramiroelliot on September 30, 2024, 02:37:56 am »
I’ve had AN in my left ear for about 7 years with slow hearing loss, until recently. I had a round of radiation in May. Everything went fine but soon after I’ve been dizzy.barely manageable but it doesn’t seem to be subsiding Recent imaging shows the tumor has grown as predicted before it begins to shrink.
Does anyone have an experience like this?
95
For those in the 'watch and wait' status / Re: Intravestibular Schwannoma
« Last post by Eebs on September 28, 2024, 03:42:44 pm »
Thank you Dan. I appreciate your response. A Neurotologist is a surgeon who specializes in these types of tumors. I had been to 5 ENT's in the past for my tinnitus, headaches and dizziness. Two of them said to live with it and the others just basically ignored my symptoms because I was in for chronic rhinitis. Long story...so the ENT's for me were no help at all.  I'm happy you have had success with your tumor. I mispoke when I said Raleigh. It's actually Winston Salem Dr. Gandalfi at Atrium Health Wake Forest and I am looking at Duke and the Cleveland Clinic for another opinion. I'm not sure I am a fan of radiation as it does not get the entire tumor. I am on a mission to find the best solution for me.  I have a Nurse Practitioner friend who is no longer practicing but stays licensed and she is a huge fan of Universities for their research, education and being on the cutting edge of technologies and science.   I just wish there was someone on here with a tumor in the same location as mine.  Have a wonderful evening and thank you for taking time out of your day to chat with me.
96
For those in the 'watch and wait' status / Re: Intravestibular Schwannoma
« Last post by DanFouratt on September 28, 2024, 02:02:31 pm »
Ebbs,

Just so you know I am not a doctor but if you have a Tumor I would go an see an ENT.  I am a fan of Dr. Brown at UNC and many in the area are fans of Dr. Cunningham at Duke.  If you are going to Raleigh these are two good options within your striking distance for the tumor. Warning, surgeons are not fans of radiation. I was 62 years young last year when I went with radiation. I did not want to get any worse and radiation made sense to me. I recommend Dr. Brown who was not happy with my decision but was part of the radiation protocol team and still sees me for follow ups. If you want to talk more I am in the area.  My email is Dan4att@gmail.com.

Good luck on your decision journey and reach out as often as you need.

Dan
97
Post-Treatment / Re: GK on 9/17 - extreme vertigo in 48 hrs
« Last post by mwatto on September 28, 2024, 02:45:20 am »
Unfortunately, while I have pretty good hearing- I have battled for 7 years (two before treatment) with really bad stabbing, stinging pain deep in that ear. No one knows why. It wakes me up at night and nothing really helps the pain. I have it now as am typing this. Its not typical it seems on this forum but its in the AN ear. I even saw a neurosurgeon and he reviewed all my MRI scans and like my CK specialist said its prob not the AN. The trigeminal nerve looks fine. I sometimes also get in that side eye and that side throat. Not on medication so I take CBD some days which helps. I have to have MRIs for rest of life I was told as no radiation treatment is a cure. I will eventually also lose hearing.
98
For those in the 'watch and wait' status / Intravestibular Schwannoma
« Last post by Eebs on September 27, 2024, 05:18:44 pm »
Hello Everyone,
I am a newbee. I have been diagnosed with a 3mm Intravestibular Schwannoma and am told it is in the Vestibule only (the bony part of my left ear) The Neurotologist I saw did not impress me. He was a little dismissive, said I was lucky to have mine in this location (I don't feel lucky at all). He is adamant that no one will do surgery on me at this point, even though I did not ask for surgery. He says surgery would result in complete loss of hearing and I would have lasting balance issues after. He wants to wait and see. I am 64 years young, have hearing loss, balance issues, dizziness, a constant headache, ear pain, ear cracking sounds and terrible pulsatile tinnitus. I have an appointment with another Neurotologist/Otologist at the end of October at a facility in Raleigh NC. that my Neurologist referred me to. Does anyone know of this type of tumor?  I can find very little information about it. I am concerned that waiting too long would result in me aging out of a time of my life when I am still young enough for better outcomes but on the other hand I hear the Neurotolgist say I will completely lose my hearing and some balance forever! I am healthy, eat a very healthy diet, walk 3-4 miles almost every day. Play pickleball and babysit my 2-1/2 year old granddaughter 3-4 days a week. I'm not ready for all of these issues which I could have with or without surgery (some I already have) Need some advice.  Thanks for listening to me vent....
99
Microsurgical Options / Re: Surgical decision - translab and more
« Last post by UkulelesAreAwesome on September 27, 2024, 12:22:46 pm »
If you take option 1 are you able to avoid the shunt? I may need a shunt and have a possibly growing AN which may require surgery. I had GK 2 years ago.
100
Hearing Issues / Re: Eustachian tube muffled hearing in good ear
« Last post by Greece Lover on September 27, 2024, 09:02:15 am »
Jayne,

I used the nedmed pot to clear my sinuses each morning and it almost always clears my stuffy ear.
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