Author Topic: can you please give me advice  (Read 4098 times)

grams 11

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can you please give me advice
« on: May 31, 2007, 01:20:24 pm »
im new on here  ,i went to see an ent about my right side total hearing loss .and ringing in my right ear ,and at times lose balance, seem to go to one side, the specialist sent me for an mri . which showed a neuroma . but very small, only about 5 mm. i have app. at hosp.in toronto sunnybrook, in sept. now today my family dr, says on report that i had mri in 99 and showed tumor then.i dont rememberever getting mri, at that time , and do you not think that my dr. would of told me then that i had a neuroma  ,i had not known about it before . untill my ent informed me just in last month .  thanking you so much  for any help  or sdvice .    take care     joan

Kathleen_Mc

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Re: can you please give me advice
« Reply #1 on: May 31, 2007, 03:32:08 pm »
Joan: many of us had small AN's found and went into the "watch and wait" mode, wait until you see the specialist to find out the right thing to do, and remember it is not like life threatening at this point. Which Dr. are you seeing at SunnyBrook, many of us have been treated there. I had my surgery for the "grown" AN by Dr. Ned. and his team, he's there and he is wonderful and I have heard good things about the other doctor's there. Know you are in good hands.
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)

grams 11

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Re: can you please give me advice
« Reply #2 on: May 31, 2007, 04:15:00 pm »
Joan: many of us had small AN's found and went into the "watch and wait" mode, wait until you see the specialist to find out the right thing to do, and remember it is not like life threatening at this point. Which Dr. are you seeing at SunnyBrook, many of us have been treated there. I had my surgery for the "grown" AN by Dr. Ned. and his team, he's there and he is wonderful and I have heard good things about the other doctor's there. Know you are in good hands.
Kathleen                                                                                                                                                          thanks kathleen,  yes, ill know more when i see the specialist ,  i get lots of needed  information on here which helps a lot , i wrote the drs, name down, but cant place just where i put it now,  im just wondered tho if my mri came back  in 1999 , that i had a neuroma, would not the dr, had told me at that time, ? i wasnt told about it till last month at my last mri. oh well, as you say , when i go to hosp, ill find out about it all,  take care ,   joan

Kathleen_Mc

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Re: can you please give me advice
« Reply #3 on: June 01, 2007, 02:27:50 pm »
Joan: I am disappointed to hear that the doctor did not inform you of the neuroma when first seen. This is unethical in my books and it makes me angry that doctor's make such decisions. I too was not informed of MRI results accurately, in ?1997 I had my first post op MRI and the neurological told me it was just showing scar tissue but because of problems I was having(unrelated) she wanted it repeated in a year, during that year I went ahead and had my first child feeling reassured I was ok, when I had the repeat mri done she set me on the my surgeon again telling me "let's just have his opinion of things" still leading me to believe nothing was wrong, when I picked up the films for the two MRI's I had done I read the reports (being a nurse I can understand such things) and very clearly the one done before the birth of my child read "regrowth of AN" and the second showed growth during the year inbetween them. I was so angry I could even face her and the only time I have said anything to her was while I passed her in the hallway and she asked what she needed to do for my follow up I just simply replied "it's a surgical issue, I deal with my sergeon" and I have never spoken to her again (except for professional reason's, we work in the same hospital).
But that's my issue, don't worry that you could have know earlier, it's still very small and reguardless everything is under control.
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)

Jim Scott

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Re: can you please give me advice
« Reply #4 on: June 03, 2007, 03:37:54 pm »
Joan:

I agree with Kathleen that a doctor who knew - in 1999 - that you had an acoustic neuroma and witheld that information from you, acted unethically.  If you truly have no memory of having an MRI scan in '99 (an experience few people quickly forget} perhaps your doctor is mistaken or you misunderstood what he said.  It's a bit difficult to believe a doctor would freely admit he witheld vital medical information from a patient but it certainly is possible if he assumed that the tumor was so small it was not worth mentioning, which, if that is the case, is irresponsible, in my opinion.

This is all basically a moot point at this juncture as you've now been diagnosed with an acoustic neuroma tumor and have an appointment with a specialist in September.

I wish you all the best as you deal with this situation and I expect you'll be fine.

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.

grams 11

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Re: can you please give me advice
« Reply #5 on: June 04, 2007, 07:06:08 pm »
 thanks  Kathleen and Jim,  i just found out today it was a cat scan i had which showed a small neuroma at that time . but no, i wasnt notifed. i called the dr, who referred me to get scan, but the receptionist just said to call hosp, library , for results . now i have both results from one in 1999   and one from about month ago. just waiting for app,         joan