small AN and removals

[macdonalddobies]

Hi Rod,

Thanks for your suggestions and kind words. No one seems to want to remove this thing. I go for my next MRI in May. If there is no change, I will just have to deal with the dizziness, etc and move on with my life. This has been hard on me emotionally and I'm sure it would be hard on anyone. This is not the news you want to hear, but I just keep telling myself that it could always be worse. I have been having a lot of visual issues too. Like small circular white beams of light in my vision, eye pain, and blurriness along with everything else. They think it is migraines, but no one can seem to really pinpoint anything, since they all say " well, you also have a tumor." I keep being told different things by different doctors. As you can imagine, this is very, very frustrating.

This forum is very helpful and I am glad it is here to share experiences and suggestions.

[MG]

Hello, mac.,
  When I first started having dizziness and visual problems I hadn't been diagnosed yet with an AN. My doctor gave me steroids and after about 2 weeks the dizziness stopped. I still have fullness in my ear and daily earaches . I am on W&W also and I don't want surgery if I can help it. Has your doctor tried steroids yet? Just wondering if it would help? Best of luck to you and I hope you can find some answers.

Take care,
MG

[Mickey]

Hi there!  W+W going into my 7th year and things have improved!  I`ve tried the steroids at the beggining and they did help. Haven`t takin them since but have definately followed a regimen of what posted in the W+W brigade religously. My ear clog hasn`t happened in six years, migranes are basically reduced to warning signs occasionly (auras) , tinnitus always there but very mangeable ( did neuromonics), dizzyness rare and just go thru it like having a cup of coffee. Tumor "stable"  I knock on wood... but have to believe that the pro active lifestyle has all to do with my success. I post this to W+W ers with the hope it will encourge you all... Best wishes, Mickey

[MG]

Thanks Mickey! You give me some hope.   Keep us updated on your progress.

MG

[macdonalddobies]

Hello,

I was actually just put on a  6 day prednisone course. They are thinking that I am suffering from migraines on top of this. They don't want to contribute the symptoms to this small AN. Well, I am off the steroid's, they helped mildly, but now we are believing my wisdom teeth could be causing a lot of the issues I am having.

I swear, I cannot get a straight answer. I still have my bottom two WT in. I have severe sinus pressure everyday, dizziness, visual disturbance, teeth pain, etc. So, maybe getting those removed will do the trick. I sure hope so. I feel like it is one thing after the other and no one can really give you a straight answer. I just want to get back to life again. I feel like all of this is consuming me. I just keep saying one day at a time...............It helps a little.

[MG]

Before I was diagnosed, I also thought it was something to do with my tooth or my jaw. I went to the dentist and he didn't know what was causing all my symptoms. I was given steroids that time too and I did get some relief. But then came the dizziness, and yes, I drove my car and was freaking out when the dizziness came on me . This lasted for weeks and I went to the doctors again and was put on my second dose of steroids.  When the period ended, my dizziness just went away and never came back but I still noticed a slight hearing loss by then and the same fullness and pain in my ear. Ugh, it was so frustrating so I made the appt. with my ENT, and the MRI came next and that was that and here I am 63 years old, with no insurance to help pay for surgery or radiation and my doctor said to W&W and hope it doesn't grow! I just have to pray every day and hope for the best. I guess everyone has a story to tell about their AN! Sometimes it helps to vent! 
Good luck to all !
MG

[GaleWynne]

Hello Jessica,

Please email me at galejesse@hotmail.com if you wish. I would be happy to call you and converse with you.

My sister had a 3MM that disabled her at around age 28 or so…she had the surgery, you may want to search my old posts for information about that.  My sister is now 41, she is single sided deaf and has some balance issues - but she lives a normal life.  She has adjusted.  My sister would be willing to speak with you too.

I have a 2MM AN which … has actually stabilized. It actually slightly reduced from over 2MM to 2MM.   I don't know how or why - I suspect having weekly massages and using some essential oils may have help - but I can't prove that.  I haven't posted on this board in a long time since things have been going well for me.  Anxiety was my worst enemy since my diagnosis. I did have visual problems and some balance problems.  It was hard to sort out what was causing what.

Anyway, I could go on and on but maybe it's better for you to contact me, if you wish, and perhaps my sister and I can listen to you and share our experiences.  We have talked about forming our own small AN group, although I admit, since I'm doing well, I have somewhat shoved my AN to the the back of my mind. Although I still have tinnitus (sp) and I have another MRI…I am now on a 2 year MRI followup..I just have tried to stop worrying and some days I just don't even think about it.  But my symptoms were nowhere near as bad as my sister's which disabled her.

You can overcome - whether it grows or it stabilizes. Trust me, you can. The best thing is to build a plan.

Anyway I could go on but please, if you wish send me an email and if you want one of us to call you, we will.  Also, I can tell you that very few doctors have removed very small ANs….my sister was lucky, Dr. Michael Novak in  Champaign IL removed hers in 2001.  3MM.    It is rare to have a small AN and to have these balance problems. I didn't read all of the posts closely so I don't know where you are…but I will tell you what, if mine gives a problem in the years to come, and Novak hasn't retired, I am getting him to take mine out! He normally works on children and he didn't blink about taking out my sister's in 2001, he did one AN surgery about every 6 weeks back then, which was a lot of experience…


Gale