Author Topic: Post-op Update!  (Read 6469 times)

Kate B

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Re: Kathy M's Update Sept 12, 2009
« Reply #15 on: September 13, 2009, 08:58:39 am »


AND - here's some words of advice for all.......  I requested to have written records of all of my procedures, imaging reports, and referral info.  ...Anyway, apparently there is a blockage on each side and I followup with the vascular guy next week.  That really irritates me - IF I hadn't asked for my written records, and IF I hadn't read them, and IF I hadn't asked questions, this would never have been addressed at all.   

MORAL - we must be vigilent, persistent, inquisitive, and relentless when it comes to our own health and well-being.  Don't trust that the health system will work as it should and that all diagnostic reports will be read and proper actions taken.


Amen.   We must persist. I asked for my MRI...it was being dismissed as flu.  Doctors are humans and depending on their exposure to different ailments, you get different info...some misleading as you found. (shoes and gait intervention).  He was treating the symptoms and not looking at the causes.

I am glad you asked for your copies. 

Kate
Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

LOIS

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Re: Post-op Update!
« Reply #16 on: September 14, 2009, 11:41:19 pm »
Hi Kathy,

Glad you are doing well but think you should have a serious talk with your docs on that original report.  I had a similar wording on my report., something about a old 1 cm. infarct in the thalmus.  My surgeon sent me to the vascular lab before even doing the surgery as it could have been a stroke risk.  Mine turned out to be a blockage on the right carotid.  He felt since the AN was on the left side we could proceed and he did.  On the report which he gave me it said follow up with another doppler scan on the carotids in 1 year.  My pcp was insisting I go see a vascular surgeon but I pointed out that the vascular lab said follow up, not vascular surgeon.  I guess he is the opposite of yours, trying to push me there and I wont go.  I did have the follow-up and it is still the same amount of blockage and my pcp is still trying to push me there but my surgeon agreed to keep up with the follow ups which I will do.  My surgeon had even pointed out numerous TIAs on the MRI and this was all before surgery.  I'm really surprised your surgeon didn't look into this before the surgery.  Thank God everything turned out alright.  You have really got to be proactive with your own health and it is good that you are.

Take care,
Lois
Diagnosed 07/08   1.2 x 1.1 cm. left AN Retosigmoid surgery 08/08 with Dr. Bartels  @ Tampa General Hospital

Jill

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Re: Post-op Update!
« Reply #17 on: September 16, 2009, 06:41:43 am »
Kathy,

In defense of PCP's, in my case she was the only one that tried to help.  The healthcare system in general is overworked.  I was sent to ENT's 3 times, a neurologist and had 2 MRI's.  Everyone said I was fine, maybe had a virus that would eventually go away or the best one was when the neurologist told me to "dye your hair blonde and become a dizzy blonde because there is nothing wrong".  After my second MRI found the tumor they re-read the first one and realized they had missed the tumor the first time.  We all know our bodies-don't give up until you get an answer that makes sense to you. 

Jill

Jim Scott

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Re: Post-op Update!
« Reply #18 on: September 16, 2009, 02:36:54 pm »
Jill ~

"Dye your hair blond and become a dizzy blond because there is nothing wrong".  That kind of belittling, absurd response from an educated, licensed physician is equally infuriating and pathetic.  We could have quite a long thread comprised of nothing but ridiculous 'diagnoses' and condescending suggestions on how to deal with what we (eventually) found out were AN symptoms from doctors that got it totally wrong - and charged for this misdiagnosis.  I respect doctors and was fortunate to have an experienced, skilled and compassionate neurosurgeon handle my AN surgery and oversee the subsequent radiation treatment.  I hold no animus toward anyone in the medical profession.  However, as I read through threads such as this and see the numerous instances of misdiagnosis and often near-insulting comments directed at patients struggling with AN symptoms coming from medical doctors that should know better, I'm irritated.   I understand that acoustic neuromas are relatively rare and some PCP and even ENT specialists aren't looking for or even have much knowledge about these benign tumors.  Still, the number of wildly wrong diagnoses and sometimes flip comments from doctors, directed at patients who are suffering with increasingly severe symptoms, is simply unacceptable.  Of course, there are wonderful, considerate doctors out there and all doctors share our humanity which includes being wrong and even insensitive.  That reality doesn't make it any easier for the undiagnosed AN patient who is told to learn how to walk properly or that "there is nothing wrong" so "dye your hair blond and become a dizzy blond".  I understand that comment was clearly an effort to be amusing but it made light of what should have been taken seriously by an educated, experienced physician.  These accounts of doctor blundering once again demonstrate that , as others have said and I'll reiterate: we simply must be pro-active with our health care.  I know this admonition has become almost trite at this point, but it's still valid.

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.

ppearl214

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Re: Post-op Update!
« Reply #19 on: September 16, 2009, 02:47:19 pm »
I'm holding back my thoughts on this until I digest the comment noted by the physician in question so I can better compose myself in my response... and trust me, it won't be pretty.

Phyl

Jill ~

"Dye your hair blond and become a dizzy blond because there is nothing wrong".  That kind of belittling, absurd response from an educated, licensed physician is equally infuriating and pathetic. 
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"