Author Topic: Is it possible to have a second AN??  (Read 4033 times)

greece22

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Is it possible to have a second AN??
« on: March 15, 2012, 07:44:42 pm »
Hi I am new here.  I had an AN removed when I was 23 years old.  Now I am pushing 40 and I have been having some very strange symptoms and haven't been able to get a Dr. to give me an MRI yet.  For the last several years i have been experiencing numbness and tingling that nobody can explain.  It has been mostly on and off except for the last 6 months when it has become constant.  My hands, feet and sometimes cheeks and tongue have rotated between a burning sensation, prickly, hot and itchy.  Its getting so bad I cant put shoes and socks on without being miserable.  I experience various episodes of Vertigo as well.  Blurry vision has gotten much worse etc. 

I was really leaning towards MS type symptoms and I am pushing to get him to do the MRI based on those symptoms but just started wondering if it was possible that this could be caused by another AN???  I am completely deaf in the side I had the tumor on which was my big indicator the first time and the Dr. had told me that it is possible that they can regrow. 

Does anyone have any thoughts on this??


nftwoed

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Re: Is it possible to have a second AN??
« Reply #1 on: March 16, 2012, 02:09:15 pm »
Hi;

  Yes, the two ANs a person encounters with NF-2 do not need to occur at the same time. Mine were discovered 18 years apart. In fact, initially, a person doesn't need to have bilateral ANs to be Dx'd NF-2. A related tumor in another part of the body and 1 AN is sufficient for Dx.
  Could be MS or NF-2 if one considers an AN might be affecting the trigeminal nerve or the person has developed neuropathy so as to cause the burny, tingly, prickly, hot, numb feelings.
  It seems to me there's no doubt you need a head MRI!
  You were quite young ( <30 ) for the first AN which is but one indicator of being NF-2.
  Would say I think MS is more common and do bear in mind you report true vertigo ( uncommon in AN ) and blurry Vs, but blurry Vs can be caused by vestibular problems as well.
  Re, "regrowth question"; You need an MRI to rule out Schwannoma, or Dx excessive white matter of MS.

Jim Scott

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Re: Is it possible to have a second AN??
« Reply #2 on: March 16, 2012, 02:09:23 pm »
Hi - and welcome.

We're not doctors but in this case, I agree with what your doctor told you...that ANs can and do re-grow.  I'm afraid that it happens all too frequently.  However, although I'm not a physician, I will comment that your symptoms don't quite mimic those of an acoustic neuroma - but only an MRI scan can help your doctor determine the cause of these unpleasant symptoms.  I hope you can get one as soon as possible.  Once you have a diagnosis, please try to post the results...whatever they turn out to be.  Thank you...and good luck.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

greece22

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Re: Is it possible to have a second AN??
« Reply #3 on: March 17, 2012, 07:43:39 pm »
Thank you for the responses.  I was pretty sure it is possible but seeing as how my first surgery was done at House Ear Institute and I never really had another Dr involved where I live, it doesn't seem any Dr. I go to knows that much detail about Acoustic Neuroma.  I seem to be getting worse on a daily basis as now my tongue is numb and metallic taste in my mouth and also am experiencing headaches...not severe but they aren't going away with tylenol and I don't usually get headaches very often.

Can they see an AN with a CT scan??

Kathleen_Mc

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Re: Is it possible to have a second AN??
« Reply #4 on: April 26, 2012, 11:16:21 pm »
yes AN's can be seen by CT.....when they're big enough
yes AN's can regrow, not just in the case of NFII when the grow on the opposite side but on the previously operated side......happened to me! ( possibly a cell or two was left behind during the first surgery or just a fluke)
yes metallic taste, yes numbness and tingling of the face (one of the last symptoms to appear for me)
I had numbness and tingling of the legs and hands years before the AN was found
yes symptoms can be mistaken as that of MS, in fact when the doctor's finally started looking into my health seriously they thought they were going to find I had MS and were rather shocked to find I had an AN
Personally I would push for an MRI NOW!
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

CHD63

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Re: Is it possible to have a second AN??
« Reply #5 on: April 27, 2012, 07:29:28 am »
If you went to HEI for your first surgery, have you had follow-up MRIs sent to them?  If not, you should be able to contact your doctor at HEI who can fax an order to your local imaging center.  When completed, you can send the CD to them for an evaluation.

I am not a doctor, but with your symptoms, I would certainly do it soon.

Best thoughts.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

leapyrtwins

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Re: Is it possible to have a second AN??
« Reply #6 on: April 27, 2012, 11:45:12 am »
Yes, it is.
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways