Author Topic: Suggestions please!!  (Read 6019 times)

loose screws (tightened)

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Suggestions please!!
« on: November 12, 2009, 10:25:21 am »
Tomorrow I'm meeting with Dr. Schwartz the neurologist from the House Ear Institute who will be separating and cutting things in my head. I have a pretty good list of questions for him but I thought maybe some of you who have been down this road might give me some questions to ask that I haven't thought of.

Thanks.
Mike
47 Y/O. diagnosed AN After MRI. 4X5X7mm within the right auditory canal. Slight hearing loss, ringing in ear, vertigo. Middle fossa with House Ear Clinics Dr Brackmann and Dr. Schwartz on 11-16-09. 6 new tightened titanium screws but no more hearing.
http://mikessurgery.blogspot.com/

lawmama

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Re: Suggestions please!!
« Reply #1 on: November 12, 2009, 12:39:57 pm »
Great idea, Mike!  My neurologist appointment is next Tuesday, so I might steal some of these questions too.

Lyn
9mm X 7mm tumor (left side), diagnosed 10-15-09
Retrosigmoid on 12-14-09 by Drs. Antonelli and Lewis (my heroes!)
Shands in Gainesville, FL
SSD, but no facial issues.  Mild tinnitus.

jaylogs

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Re: Suggestions please!!
« Reply #2 on: November 12, 2009, 01:21:29 pm »
I too would like to know...maybe even see if he can go in my head and fuse my two hemisphere's together and make me super smart so I can go on Jeopardy and win lots of money...but...that may not happen so I guess I had better settle for just getting this tumor outta my head! :)
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

CHD63

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Re: Suggestions please!!
« Reply #3 on: November 12, 2009, 03:01:03 pm »
Rather than listing them here, check out http://www.anausa.org/questions_for_physician.shtml for ANA's list of questions ..... they are very comprehensive and ones I used when I had my pre-op interviews with physicians.

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

Jim Scott

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Re: Suggestions please!!
« Reply #4 on: November 12, 2009, 03:01:38 pm »
Mike ~

I'm sure many ANers will chime in with their own list of questions but I'll give you a short list of what I asked my neurosurgeon, his  answer - and what actually happened.

How long is the surgery? "8 to 12 hours, depending on what we find"   (my surgery was just under 9 hours).

How can you assure me that I won't suffer facial paralysis? "I'll do everything I can to avoid that"  (I did not have facial paralysis).
 
What can you tell me about post-op headaches?  "My AN patients don't get post-op headaches"  (I didn't have any post-op headaches).

How long will I have to be in the hospital? "5 days - if all goes well"  (I was released on the morning of my fifth day).
 
When will I be ready to resume normal activities? "4 to 6 weeks"  (I was driving within 2 weeks and resumed most normal activities within a month).

These were my biggest concerns, a lot more important to me than knowing what to bring to the hospital (very little, actually).  I trust you'll have a similar list of questions.  Meanwhile, my best wishes for a successful, uncomplicated surgery at HEI on Monday.  You're in good hands and have a whole 'team' of people that will be rooting for you.

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.

TP

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Re: Suggestions please!!
« Reply #5 on: November 12, 2009, 03:17:13 pm »
Jim, good questions! I didn't ask hardly any questions before my surgery and I still don't know some of the answers:

Q: when I wake up from surgery, what should I expect? (my right leg was in horrible pain from laying on it for 9 hours plus I had double vision but the good news I was able to smell certain smells again...)

Q: the hole you are cutting in my head to remove my AN, what are you using to fill in the hole? (I still have never asked that to my Dr)

Q: what are the chances of getting an infection and how can that be prevented?

Q: do I need to make arrangements for someone staying with me? (I actually was ok to stay by myself during the day once I was home, but there were folks that checked on me thru out the day)

Q: who all will be in the operating room? (when I arrived in pre-op there was a person who was nerve specialist who monitored my nerves, during the surgery, if I had known that before I would have asked questions, I was too nervous or wonky headed prior to surgery to ask this guy any pertinent questions.)

Q: ask him how many times he will come out to visit your family during the surgery?

Q: what type of follow up visits are the norm for this type of surgery.

That's all I can think of, but good luck! We are praying for you guys!
4+cmm left retromastoid of cerebellopontine angle tumor removed 6/5/06; Dr. Eric Gabriel, St. Vincents, Jacksonville, FL
Left ear hearing loss, left eye gold weight, facial paralysis; 48 year old female. Dr. Khuddas - my hero - corrected my double vision

OTO

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Re: Suggestions please!!
« Reply #6 on: November 12, 2009, 09:59:16 pm »
Ask him which Doctors will be doing the follow-up while you recover in the hospital?   Dr Stefan (internal medicine) will visit you, and Dr Schwartz and Brackman will follow up through out.   However, usually they assign one of the doctors doing a fellowship at House Clinic to do the followups too...  the last couple of days I vaguely remember a different doctor coming to see me, and on the day of my discharge it was another doctor...    I thought it would have been nice to know who all these different doctors were.

Also post-surgery, ask for a copy of the surgery report, and if they do a post-surgery hearing test (audiogram) ask for a copy of that.  Also can ask for copies of the pre-surgery blood work, chest X-ray and EKG from Dr. Stefan.   I don't live in California, and when I went home, I never got around to writing or calling the House Clinic to ask for copies.    It would be nice to keep a record of everything with your regular doctor.   

loose screws (tightened)

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Re: Suggestions please!!
« Reply #7 on: November 12, 2009, 10:53:07 pm »
Thanks everyone for your suggestions they are really good.
47 Y/O. diagnosed AN After MRI. 4X5X7mm within the right auditory canal. Slight hearing loss, ringing in ear, vertigo. Middle fossa with House Ear Clinics Dr Brackmann and Dr. Schwartz on 11-16-09. 6 new tightened titanium screws but no more hearing.
http://mikessurgery.blogspot.com/

CHD63

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Re: Suggestions please!!
« Reply #8 on: November 13, 2009, 07:38:37 am »
OTO .....

Just want to follow-up with your suggestion to ask for and keep copies of all of your test, lab, MRI, etc. results, whether they be in-patient or out-patient.  It has saved me (and new doctors) a bundle of time to have any needed information readily available.  In fact, years ago I made a Word document (that I can easily update whenever there are changes) of a one-page summary of my pertinent medical history, including my family history, medical history, surgical procedures, drug allergies, immunizations, prescription medications and OTC supplements/vitamins, as well as the names and addresses of my regular physicians.  In this day and age, it can be stored on the internet but I still have some privacy concerns so I keep a folded up hard copy in my possession at all times.  Actually I did the same thing for my husband and it was extremely useful recently when he was hospitalized through the ER for a heart arrhythmia ..... saved a whole lot of time and was accurate so he was treated much more quickly and safely.

Takes a little while to do at first, if you have a complicated medical history, but then it can be updated easily.  Those of us with a history of ANs need to have that information available for any follow-up that may be needed.  Plus, it sure saves time to ask new medical staff people to make a copy of it (or keep it, if I have printed an extra one) and then write "see attached" on all of those multitude of questions.

I guess technically this was a "hijack" but did not think it warranted a new thread.  Sorry.

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

Nickittynic

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Re: Suggestions please!!
« Reply #9 on: November 13, 2009, 08:00:26 am »
My question list was basically taken from the above linked list, but with a few questions of my own thrown in. It's at http://buginthebrain.blogspot.com/2009/09/question-list.html
25 year old OBGYN nurse, wife, mother of two
5.5cm x 3.1cm left side AN removed via retrosigmoid 9/09 @ Hopkins
SSD, Tinnitus, Chronic Migraines, Facial paralysis (improving!)
Resolved - Left sided weakness, Cognitive issues
Gold weight, upper and lower punctal plugs, tarsorrhaphy

cecile k

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Re: Suggestions please!!
« Reply #10 on: November 14, 2009, 12:20:04 am »
Hi Mike:

Just wanted to chime in here to wish you all the best!

Cecile (AN removal 8 years ago this month - Vancouver, BC (Canada)

Cheryl R

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Re: Suggestions please!!
« Reply #11 on: November 14, 2009, 07:31:56 am »
Cecile,    Happy 8th anniversary!           That makes 3 of us this month 8 years ago as Kate B is also!      I know a couple more who are not on here who had theirs the end of the year also.                          Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care