Apprehensive about repeat MRI

[Tomo]

     Not looking forward to repeat MRI on Thursday and wondering if I should find different doctors??? I should have read their consultation notes after my last visit in June.  Without specifically stating it one thinks I am crazy (neurotologist) and the other (neurosurgeon)notes are so inaccurate regarding my symptoms that it sounds like this darn tumor is an incidental finding...a minor inconvenience. 
     I am so frustrated and just want my life back! There hasn't been a single day over the last year since finding this monster that I haven't been off balance, dizzy or felt normal.  It is disheartening that the Doctor's I am seeing and are supposed to help have discredited how disruptive these little buggers can be. 

  Anyone in Texas have any recommendation for surgeons, that understand small tumors can and do cause symptoms?

[Derek]

Hi Tomo...

Having read your previous posts I would be making it my top priority to find a consultant who has a proven track record in the management and treatment of a wide cross section of acoustic neuromas particularly those of similar dimensions to yours. It is imperative that you are able to bond with such an expert and have complete trust in his / her guidance and advice even if it requires that you have to travel extensively to accomplish this all important aspect. The experiences you have had thus far is quite appalling. Best of luck with your quest.

Regards

Derek

[arizonajack]

   
Anyone in Texas have any recommendation for surgeons, that understand small tumors can and do cause symptoms?

There are quite a few doctors in Texas listed on the ANA website. That they are listed aren't recommendation but are indications that they are specialists in Acoustic Neuromas.

http://anausa.org/index.php/medical-resources/physicians-directory/214-physician-directory-by-state

Ramzi Abdulrahman, M.D.
Samuel L. Barnett, M.D.
Paul Brown, M.D.
Franco DeMonte, M.D.
Paul Gidley, M.D.
Brandon Isaacson, M.D.
J. Walter Kutz, Jr., M.D.
Christopher Madden, M.D.
Bruce Mickey, M.D.
Lucien A. Nedzi, M.D.
Peter S. Roland, M.D.
Robert D. Timmerman, M.D.
Louis Whitworth, M.D.

[Tomo]

Thank you arizonajack and Derek for your response

Arizona jack both of the Dr I am seeing are on the ANA list and I have read other review by other members that are/were happy with them.  They all had larger tumors than I and some had symptoms others did not. 

Derek,
I think you hit the main point that is bothering me most...trust.  I have done a far share of reading and most tumors grow slowly 1-2 mm year. Either I have a faster growing tumor or the MRI slicing missed the largest section. I was told by the neurosurgeon in June that the tumor was stable with no growth and looked possible smaller then the scan done in March...Good news, so I thought. However, the MRI report indicates that it had increased 1.6 mm in 3 months.  If this growth rate is true, I may have to make a decision for which treatment is best for me and as you stated I need to have complete trust in their guidance, which I do not have right now.  Thank you for your post!   

[macdonalddobies]

Let me start by saying, I feel your pain. I have a 3mm AN. There is not a day that goes by where I am not dizzy, my ear doesn't feel clogged, and I just feel down right off. It is very frustrating and worrisome. I totally get what you are going through. They keep saying to me, "well , it is such a small tumor." Funny thing is, I know how i felt 7 months ago, and I know how i feel now, it is not the same. Keep your head up, and keep trying to push along. That is what I tell myself. I started taking a small RX for Klonopin. Does nothing for my symptoms, but wonders for my nerves.

Take Care