Author Topic: Well, this just takes the cake!  (Read 11606 times)

saralynn143

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Re: Well, this just takes the cake!
« Reply #15 on: August 25, 2010, 07:32:18 pm »
I'm horrified that a doctor would want to diagnose an acoustic neuroma. That strikes me as really self-centered. If I were a doctor, I would hope never to see one in any of my patients.

Sara
MVD for hemifacial spasm 6/2/08
left side facial paresis
 12/100 facial function - 7/29/08
 46 - 11/25/08
 53 - 05/12/09
left side SSD approx. 4 weeks
 low-frequency hearing loss; 85% speech recognition 7/28/08
1.8 gram thin profile platinum eyelid weight 8/12/08
Fitted for scleral lens 5/9/13

leapyrtwins

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Re: Well, this just takes the cake!
« Reply #16 on: August 25, 2010, 07:35:13 pm »
Oh, I don't know.

Docs probably need a little excitement in their lives also  ;)

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

Soundy

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Re: Well, this just takes the cake!
« Reply #17 on: August 28, 2010, 09:25:53 am »
My PCP was not at all thrilled or happy to diagnose my AN

Nancy , I too hope they do find something in his head , something  good , just no AN ... I know the feeling ... I sometimes wonder if Bo has anything between his ears other that the green water he says is in there  :D

the the comments on boredom and excitement at diagnosing some medical oddity made me think of an incident ... sorry to go off track a little

many years ago I was trying to get a big billy goat back where he was suppose to me ... he turned and rammed me ... I put my right arm out with wrist flexed so palm was facing him ... he hit my hand forcing wrist back breaking several places ...PCP xrayed me and  sent me straight to bone and joint clinic in Columbia skipping our hospital since he didn't think they could do anything with me ...

I had been exrayed and examined ... I am sitting in a cubical waiting ... no door ... I am looking out watching 2 doctors look at xrays and whispering back and forth ... they come in and one asks if I had been abused as a child ... I say not physically ... he informs me that at some point I had been horribly abused ,  because I had multiple spiral breaks at my elbow distorting it and making my arm crooked ... I realized what he was talking about and told him yes , my parents used to take an arm each and twist in opposite directions when I was bad ... then  I held both arms out to show him that both were crooked and then showed him my thumb nails and told him I had nail patella syndrome ...they forgot my broking apart wrist and got all excited about my condition until I pulled them back to reason for visit ... they wanted me to come in and let them do a study on me as they hadn't had a nail patella patient ... they were all happy and excited ... I told them thanks but no thanks ... busted their bubble


my thumb last week ... I was pinching a cut together before I used Derma Bound to close it up ... saved $600 trip to ER ... about $3 and good to go ...looked like a little scratch once I glued it ... :D .. just glad it was me and not 11 year old that had the knife cutting zip ties to get a watch she had bought out of it's packaging ... I took it from her so she wouldn't get cut ...clumbsy me
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

saralynn143

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Re: Well, this just takes the cake!
« Reply #18 on: August 28, 2010, 12:53:39 pm »
Docs probably need a little excitement in their lives also  ;)

Yes, but most doctors can afford to go zip-lining in Costa Rica or parasailing in Venezuela for their excitement.

I bet that doctor would feel a bit differently if it were their spouse or child facing a potential diagnosis of AN.

Sara
MVD for hemifacial spasm 6/2/08
left side facial paresis
 12/100 facial function - 7/29/08
 46 - 11/25/08
 53 - 05/12/09
left side SSD approx. 4 weeks
 low-frequency hearing loss; 85% speech recognition 7/28/08
1.8 gram thin profile platinum eyelid weight 8/12/08
Fitted for scleral lens 5/9/13

saralynn143

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Re: Well, this just takes the cake!
« Reply #19 on: August 28, 2010, 01:02:03 pm »
Nice patchup job on your finger there, Soundy. So, AN and nail patella syndrome. I've been hit by lightning and have hemifacial spasm. Wonder which is the less likely combination.

Sara

MVD for hemifacial spasm 6/2/08
left side facial paresis
 12/100 facial function - 7/29/08
 46 - 11/25/08
 53 - 05/12/09
left side SSD approx. 4 weeks
 low-frequency hearing loss; 85% speech recognition 7/28/08
1.8 gram thin profile platinum eyelid weight 8/12/08
Fitted for scleral lens 5/9/13

suboo73

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Re: Well, this just takes the cake!
« Reply #20 on: August 31, 2010, 04:25:33 am »
Nancy,

So sorry to hear Dave is not feeling well, with such symptoms.
I can't imagine how you feel...i just remember my sister saying 'oh, i hope and pray you don't have an AN.'

Well, i wanted to know the cause of my symptoms, so i was willing to continue my research.

I will say prayers for Dave.
Stay strong and please send an update.

Sincerely,
Sue
suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W

NancyMc

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Re: Well, this just takes the cake!
« Reply #21 on: September 01, 2010, 10:35:59 am »
Big sigh of relief!  Dave's hearing is perfect!  Just like him!
Sorry I got everyone's worry level up.  One less thing around here . . .
Watch and Wait since 9/19/01
Increased from 1.1 x 1.9 to 1.9 x 1.9 cm as of 10/27/08
Right SSD, tinnitus, compensating balance
Dr. McKenna at Mass Eye and Ear and Dr. Barker at MGH
Translab April 8, 9 hours, 18 mm Tumor all gone SSD some facial weakness

iluuvpups

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Re: Well, this just takes the cake!
« Reply #22 on: September 01, 2010, 10:39:01 am »
That's awesome!  Congratulations!  Thanks for the update.
Original 1.75cm left-side AN diagnosed Feb 2010
Translab surgery May 27, 2010 with Drs. Kartush and Pieper of MEI
SSD on left side, some facial weakness, tear duct doesn't work
Found I actually had a facial neuroma during translab
Remaining 6mm facial neuroma - watch and wait

leapyrtwins

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Re: Well, this just takes the cake!
« Reply #23 on: September 01, 2010, 11:02:17 am »
Docs probably need a little excitement in their lives also  ;)

Yes, but most doctors can afford to go zip-lining in Costa Rica or parasailing in Venezuela for their excitement.


Just saw my doc yesterday.  He's still the same, pale blond guy I've known for a while now and although I don't see him regularly, I've never found him sporting a tan.  Don't think he spends too much time zip-lining or parasailing, but I could be wrong.  I have heard of one doctor who practices in the Chicago area who is perpetually tan - but I'll refrain from naming names on the open Forum  ;D

Nancy -

so thrilled to hear Dave's hearing is perfect.  Glad he doesn't have an AN - one in the family is more than enough!

Best,

Jan
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

Jim Scott

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Re: Well, this just takes the cake!
« Reply #24 on: September 01, 2010, 02:04:44 pm »
Nancy ~

Along with many others, I'm pleased to learn that Dave doesn't have an AN and that his hearing is 'perfect'.  Thanks for letting us know so quickly. 

As for 'worrying' anyone, please don't apologize.  This is a support site.  We're here to offer encouragement to all of our members.  You needed it and we gladly offered it.  I'm just pleased that this 'story' has a happy ending.  :)

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.

Rich56

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Re: Well, this just takes the cake!
« Reply #25 on: September 01, 2010, 03:15:23 pm »
Excellent news!!  Congratulations to you both.

Rich & Scarlett
SML (Scarlett's) other half, she had - 1.5 cm x 2.5 cm Cystic AN - Right side
Retrosigmoid on 3/18/09 at MGH in Boston, MA. Dr. Barker & Dr. Lee of MGH/MEEI
no facial issues, SSD right side, balance issues to work on.
The AN Calendar is here: http://www.my.calendars.net/AN_Treatments

moe

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Re: Well, this just takes the cake!
« Reply #26 on: September 01, 2010, 09:50:42 pm »
Whewww! Now on with your life. What a relief ;D
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

saralynn143

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Re: Well, this just takes the cake!
« Reply #27 on: September 02, 2010, 05:41:27 am »
I'm so happy for Dave! And you, of course, Nancy.

As for his doctor, too bad, so sad, no AN diagnosis, go to Costa Rica and do some zip-lining.

Sara
MVD for hemifacial spasm 6/2/08
left side facial paresis
 12/100 facial function - 7/29/08
 46 - 11/25/08
 53 - 05/12/09
left side SSD approx. 4 weeks
 low-frequency hearing loss; 85% speech recognition 7/28/08
1.8 gram thin profile platinum eyelid weight 8/12/08
Fitted for scleral lens 5/9/13

NancyMc

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Re: Well, this just takes the cake!
« Reply #28 on: September 02, 2010, 08:17:22 am »
Whewww! Now on with your life. What a relief ;D
Maureen

Well, not exactly . . .
I'm nursing another patient, but this one is likely terminally ill.  Suddenly off his food on Monday, went to the doc, x-rays showed what seems to be massive hemorrhaging in lungs.  Anemia, possible tumors, struggling to breathe.  On five meds.  Tomorrow is ultrasound day.  You remember him.
Watch and Wait since 9/19/01
Increased from 1.1 x 1.9 to 1.9 x 1.9 cm as of 10/27/08
Right SSD, tinnitus, compensating balance
Dr. McKenna at Mass Eye and Ear and Dr. Barker at MGH
Translab April 8, 9 hours, 18 mm Tumor all gone SSD some facial weakness

NancyMc

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Re: Well, this just takes the cake!
« Reply #29 on: September 02, 2010, 08:33:39 am »
Kodi
Watch and Wait since 9/19/01
Increased from 1.1 x 1.9 to 1.9 x 1.9 cm as of 10/27/08
Right SSD, tinnitus, compensating balance
Dr. McKenna at Mass Eye and Ear and Dr. Barker at MGH
Translab April 8, 9 hours, 18 mm Tumor all gone SSD some facial weakness