Author Topic: First Neurotologist appt.  (Read 3098 times)

convivialjen

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First Neurotologist appt.
« on: October 02, 2010, 07:40:25 pm »


    Well, thanks all for the warm welcomes! I'm putting on a pretty happy face at work but fretting in private. It's such a relief to be able to let my hair down a bit here.  Not that I plan to dance with a lampshade on my head quite just yet....

  I met with Dr El-Kashlan and his PA today, will meet Dr Thompson soon. I believe we're aiming for Jan, I just don't want the holidays to get wiped out with surgery, and since my Mom is coming up I don't want her first Christmas with my niece Megan to be upset. Other than some mild wonky head and a few other tolerable things I feel just fine, so putting it off untill then suits me just great. I figure too if I have to be off work close to 3 months, (my time will be longer due to my job requirments), why not take off the nastiest coldest Michigan months?   
    I've just had to many close calls at work over my career, we lost a co worker to a driver speeding on the highway in an ice storm a few yrs ago, Cheryl was only 21. The last few yrs every time we get an emergency call during a snow or ice storm I break out in a flopsweat...ok, back to topic...

  I'm just thrilled Dr El Kashlan said he can implant the BAHA post during the AN removal, that will cut down on time without some supplemental assistance when I go back to work. I've been working pretty well with 90% loss for quite awhile but since folks are going to know I've had surgery I just feel like there might be some judgment about my fitness to work. I think with the assistance of the BAHA that'll close the gap.
   
 
  Ok, need to have some dinner, I have a nasty cold and lost my sense of taste on day 2 so am just having to force myself to eat, NOT usually an issue for me I can assure everyone.  HHmmm.. I never used to lose it at all, wonder if that's an AN thing?

                  Jen








     

   

   
Sudden right side hearing loss  (30%)and tinnitus 2003
wrong type MRI ordered in 2003-no tumor seen
new doc 2010, MRI with contrast ordered due to now 90% hearing loss. 12mm AN found 09/17/2010

CHD63

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Re: First Neurotologist appt.
« Reply #1 on: October 02, 2010, 08:02:10 pm »
Well, Jen .....

It sounds like you have a plan ..... and that is half of the battle.  One comment of yours kind of raised a tiny bit of concern. 
lost my sense of taste on day 2 so am just having to force myself to eat, NOT usually an issue for me I can assure everyone.  HHmmm.. I never used to lose it at all, wonder if that's an AN thing?   



..... not sure when day 2 was but if this is a relatively new symptom, you should definitely mention it to your doctors as that can be connected to where (on which nerve) your AN is pressing ...... and you might want to move your surgery date up before it compresses it more.  Just a thought, but I did not want you to ignore this particular symptom.

Let us know.  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

Kaybo

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Re: First Neurotologist appt.
« Reply #2 on: October 02, 2010, 08:09:34 pm »
Clarice~ I took it to mean that she lost her taste on day 2 of the cold...is that right?  Not too uncommon for colds, but if day 2 of diagnosis, then YES! - say something!

K   ;D
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

msmaggie

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Re: First Neurotologist appt.
« Reply #3 on: October 02, 2010, 09:15:43 pm »
Your dr. is very well known in his field, so you can be assured that you are in good hands!  Who will the anesthesiologist be?  Do you know?  I know someone who works at U of M hospital.  Is that where your dr. is?

Priscilla
Diagnosed  left AN 8/07/08, 1.9 CM
Surgery 12/10/08 at Methodist Hospital w/Vrabec and Trask for what turned out to be a cpa meningioma.

leapyrtwins

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Re: First Neurotologist appt.
« Reply #4 on: October 02, 2010, 09:54:10 pm »

I figure too if I have to be off work close to 3 months, (my time will be longer due to my job requirments), why not take off the nastiest coldest Michigan months? 

This comment raised concern for me.  Why in the world would you need to take off close to 3 months?  The typical recovery time for AN surgery is 6 weeks and it varies by individual.  I'm not sure what your job requires, but 3 months seems excessive.

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

nanramone

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Re: First Neurotologist appt.
« Reply #5 on: October 02, 2010, 10:22:33 pm »
Time off work must certainly vary, person to person. I lost my job at Purdue University due to unrelated injuries, but I can assure you that now, 4 and a half months post radiation, I would NOT be able to do the job I was doing. I have recovered physically, that's for sure...but mentally? No. I used to process an enormous amount of data during the course of an 8 hour day. I managed a breeding colony of transgenic mice for Purdue's Cancer Research Center. I can not imagine being able to do that now, only one year after my job ended. I can't remember things well enough to keep track of the amount of data I was responsible for.

I currently attend two classes at a community college, and struggle to retain what I learn long enough to do well on a test. I have to read and reread the material in order for it to sink in. I am not back to "normal"...no, I think for me, "normal" has a new meaning.

I have A's in both of my classes, English and Biology, but feel like I'm barely holding on...it is very strange. I seem to forget things easily. I write lots of notes to myself. I used to have a very sharp memory, only one year ago.

So I can imagine that with certain occupations, three months off work is not unreasonable at all, especially with surgery. We are all affected differently. Something is very different for me, after radiation.

Nancy

As an addendum to this somewhat grim post, I will say this - I'm very happy and feel good! I am grateful that life is good!


leapyrtwins

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Re: First Neurotologist appt.
« Reply #6 on: October 03, 2010, 09:44:47 am »
Nancy - 

time off work does vary from person to person, and from reading your post I can see that you and I are great examples of that.

I returned to work part-time 2 1/2 weeks post op and full time 4 weeks post op.  Granted I work a desk job which is much less strenuous than non-desk jobs.  In my case my biggest issues initially were fatigue and adjusting to being SSD.  Once I got my BAHA the SSD became a non-issue.  I've never had an issue with retaining information and I don't forget things easily - thankfully, since I'm an accountant.

Sorry to hear you have challenges you didn't have prior to radiation.  Hope things improve for you.

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

tenai98

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Re: First Neurotologist appt.
« Reply #7 on: October 03, 2010, 03:22:11 pm »
I took five months off, (surgery in april, back to work sept) but august and most of sept is off anyhow.....I wanted to make sure I was ready for my line of work as I carry precious cargo...ppls kids....I had to have my head totally with me while teaching kids how to drive...to be able to talk them thru situations etc etc....honestly I was ready to go back end of august....but had my BAHA surgery in sept and went to work 6 days later with the turban on my head...now that was a laugh....to the kids anyhow
jo
14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7

ksiwek

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Re: First Neurotologist appt.
« Reply #8 on: October 03, 2010, 08:30:29 pm »
I am going to echo similar comments about return to work varying with individual and job demands.  I had surgery June 4th (and c-section May 18th) and won't be back at work for awhile yet.  I still have nystagmus in 'all fields of gaze' as my opthalmologist put it.  For work, I drive around 4-5 hours a day and stand in dark operating rooms.  So basically, some of our most challenging situations post op!  The Dr. felt that it would be tough on my eyes, fatigue, etc.  I will say that my eyes are MUCH better since surgery and I am just trying to be patient as they recover.  I do think if my job was less hours and limited driving I would be back sooner...
Translab 6/4/10 for 4+ cm left AN.  Drs Friedman and Schwartz at HEI saved my life!
BAHA surgery on 10/7/10 with Dr Battista of Chicago Ear Institute (Oticon Ponto Pro)

convivialjen

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Re: First Neurotologist appt.
« Reply #9 on: October 04, 2010, 08:37:53 am »


    Yup, it was day 2 of headcold, not of symtoms. I started having those in 2003 and have noticed weird issues with taste and smell since. I never used to lose my sense of smell during a cold and now I do quickly. I have some days when things smell "off" or just don't have much taste. Some days everything is fine. Keep in mind my symptoms have been pretty much consistent for years except for the worsening hearing.  What drove me to the ent 3 weeks ago was the lack of ability to locate sound, I'd been started easily when people came up behind me for many many months, perhaps since last winter. The doc in 2003 had warned me a hearing aid wouldn't help my type of hearing loss so as my hearing worsened I just resolved to live with it. Only when it was really frustrating did I decide to see if perhaps the U of M had some new hearing aids that could help me. I really wasn't suffering day by day, most of the things I look back and identify now as symptoms I just lived with on a daily basis and figured were aging or fatigue. The wonky head I figured was fatigue from working 12 to 14 hr days, the ear pain I associated to "sinus" problems...etc....I was just looking for hearing aids, ended up with a tumor....I had no idea I had 90% hearing loss as well...

   The 3 months off does seem like a lot but I work as a Paramedic, that entails a lot of lifting, carrying, working very very long hours and making snap decisions under pressure.  Many hours of driving and rather extreme situations. When I had bariatric surgery I was off for 3 months because I couldn't go back with any lift or work restrictions. If I had a desk job I could have gone back at perhaps 4 to 6 weeks. Unfortunately ANY work restrictions, casts, big bandages, wounds..etc..means I can't work. Same for most medics, Fire Fighters and Cops I know. We do not have light duty jobs for non work related illnesses or injuries at my company.  I just thank god we have long term disability and can be off for upto a year, albiet at grealy reduced pay.

   The 3 month wait for  surgery was my idea actually, my hubby doesn't have anymore vacation time until  Dec. and we just can't afford to have him off on unpaid fmla. Plus I  am going to take the time to visit my Mom in DC/VA at Christmas.

  I'm not sure who the gas passer will be for my surgery, when I meet Thompson I'll ask...:)

    off to work I go....nothing like a Monday in EMS!!!

                Jen
Sudden right side hearing loss  (30%)and tinnitus 2003
wrong type MRI ordered in 2003-no tumor seen
new doc 2010, MRI with contrast ordered due to now 90% hearing loss. 12mm AN found 09/17/2010

msmaggie

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Re: First Neurotologist appt.
« Reply #10 on: October 04, 2010, 10:10:34 am »
Hey Jen,
The name I am looking for is Dr. Paul Smythe.  He is a very dear friend of mine.  He is an anesthesiologist w/a head and neck surgery group at U of M, and when I was researching my options, I think he surely must have shown my MRI to every dr. he came in contact with.  Many of the names you have mentioned saw my MRI, whether they liked it or not!  I adore Paul anyway, but now he really is my hero.  He went to U of M w/my husband many years ago.
Good luck with your dr. visits.  Like I said, it is a very well-known group of drs.  When I sent my MRI to House for a phone consultation, Dr. Wilkinson knew and approved of all of them :).

Priscilla
Diagnosed  left AN 8/07/08, 1.9 CM
Surgery 12/10/08 at Methodist Hospital w/Vrabec and Trask for what turned out to be a cpa meningioma.

CHD63

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Re: First Neurotologist appt.
« Reply #11 on: October 05, 2010, 07:48:08 am »
Jen .....

Thanks for clearing up the details.  It sounds like you can safely wait until December.  You are a very strong woman ..... and I admire your strength and field of work ..... just do not ignore significant changes in your symptoms between now and then.

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