Author Topic: Anyone had Dr. Pensak in Cincinnati?  (Read 13463 times)

cincinnati

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Anyone had Dr. Pensak in Cincinnati?
« on: June 12, 2008, 12:21:14 pm »
Hi !!!

I'm a newbie!!!! Was diagnosed May '07 with AN. Very small 3mm x 4mm, but, with 25% hearing loss, in left ear, dizziness, nausea. Have decided to get surgery. I'm tired of the symptoms!!!!! My question is I have seen Myles Pensak and Dr. Theodosopolus and am scheduled for a middle fossa June 27. I have also recieved a second opinion from Dr. Friedman, House Ear Clinic. Both have come with the same solution, but, which is the better doctor??????
I LOVE Dr. Friedman's communication and he is VERY personable. I cannot even speak to Dr. Pensak uless I make an appt. and go in. I am concerned about communication, if I stay in Cincy. Can anyone offer there input on this.

Thanks!!!!!!!!!!!
Cincinnati
AN left side 4mm x 3mm
hearing loss left side
CFS leak healed
I feel like a bobble head, still dizzy
Palsy on left side much better
 Middle Fossa 6/27/08
 Pensak and Theodosopolus Mayfield Clinic Cincinnati

leapyrtwins

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Re: Anyone had Dr. Pensak in Cincinnati?
« Reply #1 on: June 12, 2008, 01:24:31 pm »
Cincinnati -

I don't personally know either doctor, but they both have great reputations.

I had AN surgery - one year ago - and IMO although House is a wonderful place, I would not travel all the way to CA for surgery when you have a great doctor in your home state.

I personally could not imagine getting on an airplane a few days - or even a week - post op, and my side-effects were minimal.  Also, from what I've heard from others who have had complications, CSF leaks, etc., after being released from the hospital, I would not want the doctor who performed my surgery to be in another state.  Although everyone who travels to House has their own doctor at home who will generally deal with any post op problems, some think that is not the ultimate situation and I would agree.

I want to stress that this is just my personal opinion and others might agree or say something entirely different.

As for communication for your doctor in OH, I can't believe that he will not talk to patients unless they make an appointment.  While I'm sure there are some patients who take advantage of their doctor's time unnecessarily, I think if you talk to Dr. Pensak and tell him of your concerns he will be more than willing to speak to you without an appointment.  He may want some ground rules - hours you can call him outside of an emergency situation, circumstances that warrant an appointment, etc. - but I'd be surprised if he wasn't willing to accomodate your request.

Also, are you sure that this is his policy?  I have a doctor who always says feel free to call with any questions, but on occasion I encounter a problem with his office staff not wanting to take a message for him to call me and I have to insist on it.  This doctor is always fine with this and always calls me back.  Some office staff decide they are "gatekeepers" even though that is not the doctor's wish.  If this is the case with your doctor's staff, he needs to know about it.

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

cincinnati

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Re: Anyone had Dr. Pensak in Cincinnati?
« Reply #2 on: June 12, 2008, 01:39:09 pm »
Thank you so much for the reply. Your advice is helpful!!!! I have spoke with his nurse several times, kind of like a third party conversation, and I am going in for an appt. June 17th with my list of questions and concerns. Fortunately, I have tremedous support through my family, financially and physically, that makes my decision even harder to decide where to go.
I will definately make no decisions till I speak with Pensak on Tuesday.
 
Thanks :)
Cincinnati
AN left side 4mm x 3mm
hearing loss left side
CFS leak healed
I feel like a bobble head, still dizzy
Palsy on left side much better
 Middle Fossa 6/27/08
 Pensak and Theodosopolus Mayfield Clinic Cincinnati

oHIo

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Re: Anyone had Dr. Pensak in Cincinnati?
« Reply #3 on: June 12, 2008, 03:45:18 pm »
I had surgery in Cincinnati in March, but did not use Dr. Pensak or Theodosopolus due to being referred to another MD.  Both have a great reputation.  I know nothing though about their communication.  The neurotologist that did my surgery was great with communication and encouraged me to email him for any questions...and I did.  He was quick to respond.  I also had to call the office pre op and post op for issues and everyone was great. 

Mama R aka Ohio Also, had surgery the day after I did at The University of Cincinnati.  You can PM her and ask her more specific questions.  Feel free to PM me and I will answer any questions you have about the hospital.  I did not have the option to go to California although I did consult House.   

I will try to PM you later...I'm out the door to spend the next few hours at an overstimulating child's birthday party :o

Cheryl R

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Re: Anyone had Dr. Pensak in Cincinnati?
« Reply #4 on: June 12, 2008, 04:21:17 pm »
I have met Dr Pensak at one of the AN symposiums.These symposiums are held every other year at some big city in the country with drs with AN experience giving sessions  about all aspects of ANs.   This was either 2003 or 2005 that I remember asking him a question.  I can not even remember what his session was on but it was after it I talked to him.   I have an AN friend who was deaf on both sides and had AN surgery on one side and then a cochlear implant on the other and was having questions about some difficulty she was having.        He seemed very interested in what I asked and willing to talk to me.                    He seemed to know alot in what he talked about for his session.                  This is not exactly pertaining to what you want to know but I do think he is very AN experienced.             I think some of these drs are not perfect in how they get along with people but have the needed experience for doing the surgery.
                                                     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

leapyrtwins

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Re: Anyone had Dr. Pensak in Cincinnati?
« Reply #5 on: June 13, 2008, 12:12:45 pm »
Fortunately, I have tremedous support through my family, financially and physically, that makes my decision even harder to decide where to go.

Glad to hear you have lots of physical family support; it will be invaluable post op.  I had wonderful support from my family also.  As for the tremendous financial support, I can't really say I can relate to that ;)  I'm a single parent trying to support two kids.  However, I am thankful that I have a great insurance policy that covered my surgery 100%.

Good luck with the appt on the 17th.  Let us know how it goes,

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

cincinnati

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Re: Anyone had Dr. Pensak in Cincinnati?
« Reply #6 on: June 13, 2008, 03:17:12 pm »
I am sooooooo grateful!!!!!!!! Now I have another support team, all of you!!!!!!!!!!!!!!!

Thank you!!!!!!

Charlene
AN left side 4mm x 3mm
hearing loss left side
CFS leak healed
I feel like a bobble head, still dizzy
Palsy on left side much better
 Middle Fossa 6/27/08
 Pensak and Theodosopolus Mayfield Clinic Cincinnati

leapyrtwins

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Re: Anyone had Dr. Pensak in Cincinnati?
« Reply #7 on: June 17, 2008, 06:44:09 am »
Charlene -

Good luck with today's appointment with Dr. Pensak; I'll be thinking about you.

Don't forget to update us on what he has to say.

Thanks,

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

cincinnati

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Re: Anyone had Dr. Pensak in Cincinnati?
« Reply #8 on: June 18, 2008, 09:05:54 am »
Had my appt. today with Pensak.  I feel soooooo much better after speaking to him in person. ;D
His coodinator Patti is FANTASTIC!!!!
I will make a decision very soon. Either to stay here in Cincy or go to House.
I am still scheduled for middle fossa June 27.
Thanks Jan!!!!!!!!! ;)

Charlene
AN left side 4mm x 3mm
hearing loss left side
CFS leak healed
I feel like a bobble head, still dizzy
Palsy on left side much better
 Middle Fossa 6/27/08
 Pensak and Theodosopolus Mayfield Clinic Cincinnati

leapyrtwins

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Re: Anyone had Dr. Pensak in Cincinnati?
« Reply #9 on: June 18, 2008, 12:50:57 pm »
Charlene -

glad to hear you found a comfort level with Dr. Pensak.  I have a huge comfort level with my neurotologist - neurosurgeon, too - and I find that it helps me tremendously.  Knowing you are in the capable hands of someone who truly cares is a great feeling. 

Good luck with your decision.  Keep us updated  :)

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

cincinnati

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Re: Anyone had Dr. Pensak in Cincinnati?
« Reply #10 on: June 19, 2008, 08:32:17 am »
Well, the decision is made. :)
I am staying in Cincinnati and will have the Middle Fossa done at University hospital with Drs. Pensak, Theodosopolus and Sammy on June 27 at 7:30 in the morning. :o
I'm a little nervous, but, I'm sure all will be well.
Now, I just have to get all the kids taken care of, which will be with mom and dad.
Lot's to do!!!!!!!!! :P

Thank you for the support!!!!!!!!!

Charlene
AN left side 4mm x 3mm
hearing loss left side
CFS leak healed
I feel like a bobble head, still dizzy
Palsy on left side much better
 Middle Fossa 6/27/08
 Pensak and Theodosopolus Mayfield Clinic Cincinnati

leapyrtwins

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Re: Anyone had Dr. Pensak in Cincinnati?
« Reply #11 on: June 19, 2008, 10:58:14 am »
Charlene -

good to hear you made a decision - one of the hard parts is now over  :)

Don't forget to put your surgery on the AN Calendar - if you haven't already.  There is a link to it in Steve's (sgerrard) profile.

Being nervous is normal, but I'm confident your surgery will go well.

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

cincinnati

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Re: Anyone had Dr. Pensak in Cincinnati?
« Reply #12 on: June 23, 2008, 08:10:33 am »
Well, 5 days and counting!!!!!!! :P I'm getting more nervous by the day.
I have a silly question, but, I have heard people talk about being, um, how do I put this nicely, backed up. Anyone have any insight on this and the best way to avoid it? Also, what do you take to the hospital? And, how much hair do they shave? Any words of advice would be great!!!!!!!

Thanks!!!!!!!

Charlene
AN left side 4mm x 3mm
hearing loss left side
CFS leak healed
I feel like a bobble head, still dizzy
Palsy on left side much better
 Middle Fossa 6/27/08
 Pensak and Theodosopolus Mayfield Clinic Cincinnati

leapyrtwins

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Re: Anyone had Dr. Pensak in Cincinnati?
« Reply #13 on: June 23, 2008, 02:23:36 pm »
Charlene -

I had retrosigmoid, so I'm not sure about mid fossa, but my docs shaved very little hair.  And post op it grew back very fast.  By the time my neurotologist removed my stitches - about 9 days post op - my incision scar was very difficult to see because there was so much hair around it.

As far as being "backed up" goes, my neurotologist put me on a stool softener post op and had me continue it for a few weeks after I was released from the hospital.  It did the trick very nicely  ;)

Words of advice - release control.  Give yourself up to the doctors who are doing your surgery; have confidence in them.  Don't stress about possible side-effects.  This is your AN journey and your results will be different from other's results.  Just take things as they come.

Hang in there,

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

cincinnati

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Re: Anyone had Dr. Pensak in Cincinnati?
« Reply #14 on: July 09, 2008, 12:26:57 pm »
Hi Everyone!!!!!!!!!!!!!!!!! ;D

I'm FINALLY home. I had surgery June 27 and came home July 7th.  :P  A lot longer stay than planned. I ended up with a CSF leak and when they pulled the lumbar drain out I was still leaking, very little, so they let me go home. The lumbar was the worst pain I have ever experienced in my life. If the leak does not stop after a few days they will go back in the incision and put a patch in to plug it up. As long as I don't have to have a lumbar drain again I don't care. :)
After surgery I never did make it to ICU, they had no room, so I was in recovery, by the door everyone comes in and out of, until I was moved to my private room. ;D The nurses and docs were great I think I just had some unfortunate things happen. They thought I had strep throat but it was thrush, yeah, but, it is going away quite quickly with the meds.
I am not going to post too much today, my first day without nausea ;D, but, wanted to thank everyone for all of your prayers and support.
I couldn't have done it with out you!!!!!

Talk to you soon!!!!!!!!!!!!! ;D

Charlene
AN left side 4mm x 3mm
hearing loss left side
CFS leak healed
I feel like a bobble head, still dizzy
Palsy on left side much better
 Middle Fossa 6/27/08
 Pensak and Theodosopolus Mayfield Clinic Cincinnati