Author Topic: Looking for experienced doctors in Florida  (Read 644 times)

Loriglass

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Looking for experienced doctors in Florida
« on: June 09, 2019, 11:39:02 pm »
I live in Sarasota Florida and was recently diagnosed with a 2.3 cm acoustic neuroma. My hearing is diminished in my right ear, I have LOUD tinnitus and a feeling of fullness. First doctor said I had to have surgery in the next few months and not to wait six months because the tumor is pressing on my brain stem. He also said gamma knife wasn’t an option because of true brain stem issue and because it was too late. Second neurosurgeon said gamma knife might be an option, but I am not in favor of keeping the tumor in my head and waiting to see how it reacts to the radiation. Right now I am about 90% decided on surgery. Consequently I am looking for recommendations for an highly qualified, very experienced AN neurosurgeon and neurotologist. I am also interested in someone who uses endoscopy in addition to microscopy. I am willing (and able) to go out of state if necessary, but I thought I should investigate the home teams first.
Thanks for any help you all can give.

Sheryl

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Re: Looking for experienced doctors in Florida
« Reply #1 on: August 16, 2019, 07:57:02 pm »
Hi - I was first diagnosed in 2001 and have done W&W for 18 years.  I went to numerous doctors in Florida (Fort Myers area) and Boston.  I consulted with neurosurgeons who were friends of the family.  Quite a few recommended Tampa area, Miami area, or University of Florida in Gainesville.  I do not have specific names.  Dr. Ian Dunn was in Boston, specialized in brain stem tumors but he moved to Oklahoma City.  You can probably do a search on him.  The fellow who trained him, Dr.Ossama Al-Mefty is still in Boston and considered one of the best in the country.

Good luck
Sheryl
9th cranial nerve schwannoma - like an acoustic neuroma on another nerve. Have recently been told it could be acoustic neuroma. Only 7 mm of growth in 18 years. With no symptoms. Continuing W&W

chrisabbott

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Re: Looking for experienced doctors in Florida
« Reply #2 on: August 17, 2019, 01:09:18 pm »
Hi I had a 3.1cm tumor (mostly) removed by Dr Dunn & Dr Bien last June - and yes, he is in Oklahoma City with OU Physicians.  My tumor was already much too large for non-surgical approaches, and I lost the last of my AN side hearing just before meeting Dr Dunn so translab was my best option.  I understand the size at which most would no longer recommend radiation treatments is somewhere between 2 and 2.5 cm. 

I am still recovering, but slowed mostly only eye issues - I stopped making tears shortly before surgery, and gained a scratched cornea which is still healing.  My tumor was sticking to my facial nerve so they left a long sliver behind so as not to cause more damage.  Within a few days post op, I was back to same facial symptoms as prior to surgery - currently getting all kinds of strange sensations that might be my nerve waking back up - this is my "wait and see" period. 

I felt Dr Dunn and Dr Bien were both skilled, personable, and communicate well - they visited me several times post-op and I felt well cared for.  I hope that whatever your journey, you also find medical professionals that make you feel cared for.
VS = 3.1 x 2.8 x 2.5 cm diagnosed 3/2019
Translab June 13th Dr Bien & Dr Dunn in OKC
No change in facial numbness, dry eye (not worse!)

Maria Odete

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Re: Looking for experienced doctors in Florida
« Reply #3 on: August 18, 2019, 01:44:17 pm »
Hi Chris,

It would have meant a lot to me if my then-Neurotologist visited me several times during my post -Acoustic Neuroma surgery - He didn't do that! He visited me once post-op. How can people be so cold-hearted and rude ? I didn't reciprocate. Instead, I expressed to him my highest degree of  good manners that I possess during the time he was my physician.I wanted to show him that I wasn't like him. My mom was a patient of this physician as well. I notified him in an e-mail of her death, and he never replied to me to express his condolences to me- lack of sympathy on his part. I was hurt by his conduct.The Bible says to treat others  more important than yourself.

Maria Odete

Surgical Team: Dr. Fraser Noel,Neurotologist, Victoria,B.C., British Columbia, Canada and Dr. Michael Boyd, Neurosurgeon, Vancouver, B.C.
,Canada





























































































« Last Edit: August 19, 2019, 05:51:59 pm by Maria Odete »
Totally resected 3.5 cm Acoustic Neuroma
Year of Surgery: 1992

PSALM 83:18:"Let men know that You,Whose name Alone is YAHWEH,are the Supreme Head over  all the earth!"-The Holy Scriptures
PSALM  37:14-20 The Holy Scriptures - Isaiah 46:4 -The Holy Scriptures - PSALM 35:10 - The Holy Scriptures

chrisabbott

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Re: Looking for experienced doctors in Florida
« Reply #4 on: August 18, 2019, 06:45:02 pm »
Sorry to hear that - I think the surgery is just the first (albeit major) step toward recovery!  The surgeons should want to see their handiwork and verify all is well with their patient.  Dr Dunn left explicit instructions that he was to see me before any treatments or moving me - so he saw me next morning before they fixed my abdominal incision being repaired; the next day before they moved me from ICU to regular ward; and again before discharge.  My other surgeon, Dr Bien, visited me twice, and then had a day with his family before flying to an out of state conference - he called me (Sunday) to verify I felt comfortable about being discharged from hospital, and apologized for not being able to stop by before going out of town! 

Both doctors were way off target with their pre-op assessment of how much time I would need off work, but I have a very demanding job including a lot of out of state travel - I won't go back and risk being out of town not feeling good, nor can I afford to make mistakes as it would hurt my team's reputation as well as result in poor service to my customers.  Fortunately, they have been very agreeable to write up support for my short term disability  - all part of what I need to fully recuperate.  No ride like this is perfect, but I do feel I have been in good hands - I would wish for a similar experience for anyone having to go through this.
VS = 3.1 x 2.8 x 2.5 cm diagnosed 3/2019
Translab June 13th Dr Bien & Dr Dunn in OKC
No change in facial numbness, dry eye (not worse!)

Maria Odete

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Re: Looking for experienced doctors in Florida
« Reply #5 on: August 18, 2019, 08:25:13 pm »
Hi Chris,

You were in good hands.

Maria Odete

Surgical Team: Dr. Fraser Noel,Neurotologist,Victoria, B.C., Canada and Dr. Michael Boyd, Neurosurgeon, Vancouver, B.C., Canada
« Last Edit: August 19, 2019, 05:49:33 pm by Maria Odete »
Totally resected 3.5 cm Acoustic Neuroma
Year of Surgery: 1992

PSALM 83:18:"Let men know that You,Whose name Alone is YAHWEH,are the Supreme Head over  all the earth!"-The Holy Scriptures
PSALM  37:14-20 The Holy Scriptures - Isaiah 46:4 -The Holy Scriptures - PSALM 35:10 - The Holy Scriptures

Maria Odete

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  • Isaiah 65:13- Isaiah 43:10- Proverbs 24:25
Re: Looking for experienced doctors in Florida
« Reply #6 on: August 20, 2019, 08:42:44 pm »
Hello,

I'm adding the following comment to my penultimate post on this thread : ... I was very determined during my hospital admission not to see this Neurotologist again , who performed my Acoustic Neuroma surgery in 1992. Shortly after my discharge from the hospital, I changed my mind and decided to keep seeing him as long as necessary and teach him lessons in humility during consultations with him. I hope he reads this.

Maria Odete

Surgical Team: Dr. Fraser Noel,Neurotologist, Victoria, B.C., Canada and Dr. Michael Boyd, Neurosurgeon, Vancouver, B.C., Canada
« Last Edit: August 20, 2019, 11:58:50 pm by Maria Odete »
Totally resected 3.5 cm Acoustic Neuroma
Year of Surgery: 1992

PSALM 83:18:"Let men know that You,Whose name Alone is YAHWEH,are the Supreme Head over  all the earth!"-The Holy Scriptures
PSALM  37:14-20 The Holy Scriptures - Isaiah 46:4 -The Holy Scriptures - PSALM 35:10 - The Holy Scriptures