Author Topic: Recent Diagnosis - trying to help on DR decision  (Read 7983 times)

Cheryl R

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Re: Recent Diagnosis - trying to help on DR decision
« Reply #15 on: May 04, 2011, 06:01:56 am »
Dan,    Good to hear of your choice and hope all goes well for your daughter!     The whole AN business is not fun esp right past surgery but it does get better in time.          Feel free to ask any questions you may have about surgery.           Plus make sure you get the hospital rate if staying at a motel.               May 20th will be here soon and will be thinking of her!
                                          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

CHD63

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Re: Recent Diagnosis - trying to help on DR decision
« Reply #16 on: May 04, 2011, 07:40:37 am »
Dan .....

So glad you have made a decision on treatment ..... that is one of the hardest parts of the whole journey.

Thoughts and prayers that all goes well.  Be sure to let us know how she does.  Maybe she can register and join us here on the Forum, as well.

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: Recent Diagnosis - trying to help on DR decision
« Reply #17 on: May 04, 2011, 02:48:56 pm »
Dan ~

Congratulations on arriving at a decision on a treatment and the doctor to perform AN removal surgery on your daughter.  Dr. Gantz has a fine reputation and I'm sure he'll do an excellent job.  Your comment about being 'at peace' with the decision for the type of treatment and the doctor to administer it is absolutely correct.  Your daughter (and her parents) will be in our thoughts and prayers as May 20th approaches.

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.

DanW

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Re: Recent Diagnosis - trying to help on DR decision
« Reply #18 on: June 01, 2011, 10:19:43 pm »
I wanted to give an update on the surgery. 
The insurance coverage was an issue down to the day of the pre-op, in the end they agreed to cover like In-Network because of the experience of Dr. Gantz. Lots of stress but everybody was happy going into surgery.  She had 3 people for support, me (dad), her mom and her boyfriend.
Surgery was done on 5/20 by Dr. Gantz and assistance from Dr. Mawry (sp?). He came out when he was done about 1pm and said he was able to all of the AN out and preserve both facial nerves and hearing. The 3 of us were so happy. The best possible outcome! WOW.
About 24hrs later the brain swelling started to have significant impact on her cognitive abilities. There were 3 noticeable areas:  1) Not understanding questions,  I pointed at clock and said "what is this object" she said 5pm (the current time). 2) She struggled finding the right word, she pointed at a fan in the corner and said "fix the ice", I said do you mean the fan, she said yes.  3) She was also was able to identify a phone correctly, but didn't know what it was for.
They did a CT scan to confirm no bleeding Sat night, it showed swelling but no bleeding.  They moved here to Neuro IC unit to make sure she was monitored closely, every 2 hours.  The DRs indicated that the language issues were specifically impacted because AN was on the Left side, Left Frontal Lobe is the language center. She slowly continued to decline, they did an MRI on Sunday night to confirm still no bleeding, and wanted to confirm no stroke. Monday early AM the Chief of Neuro came by and talked to me and said no strokes, just swelling and it should improve soon. By Monday night we started to see improvement and moved out of Neuro IC to normal room, by Tuesday AM we saw more improvement, and more yet Wed AM.

We checked out Wed noon and stayed in Iowa City until noon the next day before drive back to TwinCities. All of us needed the sleep. After 5 days of rotating shifts and not much sleep we all slept well. The drive wasn't too bad for her. She napped alot. We stopped a few times to get her out and moving so she was tired and able to sleep for the next driving section. We took 6 hrs for a 4.75hr drive.
She is not having problems 1 or 2 but still is having a few issues with some understanding in reading comprehension etc.

She is walking about 2 times a day for 3 blocks. Having some "dizzy" issues but not really sick. This is way better than I expected. She over did it yesterday, after getting out stitches, she cleaned here room for 4 hours. Today she has had headaches and she has been dizzy much of the day. We expected ups and downs, today was a down. But in general she is progressing well.

Thanks everyone for your kind words of encouragement.  We couldn't be happier with our decision and results.
Thanks to Dr. Gantz and his Univ of Iowa team!

Dan, and daughter Marie.

Cheryl R

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Re: Recent Diagnosis - trying to help on DR decision
« Reply #19 on: June 02, 2011, 08:34:29 am »
Dan and Marie.    Thank you for letting us know about how Maries surgery went.     She was in my thoughts the 20th.    That is too bad that there was some problems for some worry for you.            That did also happen to me my last surgery which I do mention some.  My surgery was also on the left side and there have not been many posts of this happening during my long time of being on here.      I stayed in the regular surgical ICU and had surgery on Thurs and and better by Sun and to regular room Mon.   I had a CT scan done which showed it.    I had some forgetfulness over a few things.     Recovery like usual once over it.   
    She is still soon after surgery and will have up and down days.              I hope it goes well now for her and all of your family.
                                                     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

Jim Scott

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Re: Recent Diagnosis - trying to help on DR decision
« Reply #20 on: June 02, 2011, 03:33:11 pm »
Dan & Marie ~

Thanks for the update and congratulations on reaching this point in your daughter's recovery process.  Yes, the initial swelling can wreak havoc on the patient for awhile but, thankfully, this usually resolves, as it did for your daughter.  The recovery process is often slower than the patient would like and setbacks stemming from over-exertion are fairly common.  The good news is: it gets better. 

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.

DanW

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Re: Recent Diagnosis - trying to help on DR decision
« Reply #21 on: July 21, 2011, 11:13:37 pm »
We wanted to give one more followup.
Marie is doing very well!
She had her followup in Mid June and got a all clear on the MRI, she still had some fluid in her ear and her incision was sore but since then all issues have been resolved.
In her words, she is feeling normal.
She has no effects at all from the surgery. She feels her balance is normal, with no dizziness at all.
After the fluid in her ear has drained and all infections and swelling are gone her hearing is the same as it was before surgery.
WOW, the results are way beyond our expectations.
We feel so blessed that she had such fantastic results, your help in finding the best surgon DR Gantz, the stress of fighting with insurance to get her to the best DR was very much worth it.
I encourage everyone to fight for the best possible treatment, not just what is covered by the local specialist.
Thanks, everyone for the support.
Dan and Marie

Cheryl R

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Re: Recent Diagnosis - trying to help on DR decision
« Reply #22 on: July 22, 2011, 07:44:34 am »
Dan and Marie.      I am so glad to hear this as I was wondering how she was doing now!     I am glad I mentioned Iowa City to you.    One can be nervous as to where the AN is in a person can make a difference in their outcome and can cause some issues no matter where they go!      I am happy for Marie and wish her a wonderful life ahead!                      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

CHD63

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Re: Recent Diagnosis - trying to help on DR decision
« Reply #23 on: July 22, 2011, 12:13:30 pm »
Dan .....

What a splendid outcome for Marie!!  So happy that all is well and she can get on with her life.

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: Recent Diagnosis - trying to help on DR decision
« Reply #24 on: July 22, 2011, 12:20:50 pm »
Dan ~

Thanks for the update on Marie and that splendid news!  I'm just so happy for her.  We were glad to offer the support and are all thrilled to learn about Marie's fantastic recovery.  Have a great summer!  :)

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.

 


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