Author Topic: 2nd opinion on current complications  (Read 2501 times)

LakeErie

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2nd opinion on current complications
« on: June 06, 2012, 11:48:13 am »
Today I had a 2nd opinion from an ENT not involved in my surgery or after care about my swallowing and larynx problems. I told him what my surgeon told me about needing 12 to 18 months for cranial nerves to heal, and that I would ultimately recover completely in his opinion.
I have been improving for the 8 months since surgery, but still have problems. The ENT today reviewed the information about my surgery and told me he could  "look at" my vocal cord, but his advice would be no different from what I had already been told, that it will take more time. He also added he believes that once the vagus nerve starts to heal, it continues to do so which is reason for optimism.  I am to just use my voice as I normally would and see where I am at the one year point in Oct.
My one year MRI scan of the residual tumor is already scheduled. That is the next step. This recovery can entail some significant time, but other than the throat involvement, I feel completely normal. No complaints about that.
4.7 cm x 3.6 cm x 3.2 cm vestibular schwannoma
Simplified retrosigmoid @ Cleveland Clinic 10/06/2011
Rt SSD, numbness, vocal cord and swallowing problems
Vocal cord and swallowing normalized at 16 months. Numbness persists.
Regrowth 09/19/2016
GK 10/12/2016 Cleveland Clinic
facial weakness Jan 2017

Tod

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Re: 2nd opinion on current complications
« Reply #1 on: June 06, 2012, 12:56:46 pm »
Unfortunately, patience is called for. I am now 28 months or so post surgery but still have improvement with my voice and swallowing, so keep doing what you are doing.

Best of luck with your continued recovery.

-Tod
Bob the tumor: 4.4cm x 3.9cm x 4.1 cm.
Trans-Lab and Retro-sigmoid at MCV on 2/12/2010.

Removed 90-95% in a 32 hour surgery. Two weeks in ICU.  SSD Left.

http://randomdatablog.com

BAHA implant 1/25/11.

28 Sessions of FSR @ MCV ended 2/9/12.

LakeErie

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Re: 2nd opinion on current complications
« Reply #2 on: June 06, 2012, 02:54:45 pm »
Thanks, Tod. I remember a prior post of yours about your voice going " teenage " again on you. I am having that now myself. I am getting some more control of my voice now, and am at least audible. I am glad to know someone else has continued to improve over a long period, longer than mine anyway.
4.7 cm x 3.6 cm x 3.2 cm vestibular schwannoma
Simplified retrosigmoid @ Cleveland Clinic 10/06/2011
Rt SSD, numbness, vocal cord and swallowing problems
Vocal cord and swallowing normalized at 16 months. Numbness persists.
Regrowth 09/19/2016
GK 10/12/2016 Cleveland Clinic
facial weakness Jan 2017

Tod

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Re: 2nd opinion on current complications
« Reply #3 on: June 06, 2012, 04:20:01 pm »
People tell me frequently how much my voice is improving. I can even sing a bit more. I still can't yell, but I can project more. With luck, it takes only time and patience.

-Tod
Bob the tumor: 4.4cm x 3.9cm x 4.1 cm.
Trans-Lab and Retro-sigmoid at MCV on 2/12/2010.

Removed 90-95% in a 32 hour surgery. Two weeks in ICU.  SSD Left.

http://randomdatablog.com

BAHA implant 1/25/11.

28 Sessions of FSR @ MCV ended 2/9/12.

Mei Mei

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Re: 2nd opinion on current complications
« Reply #4 on: June 06, 2012, 08:46:40 pm »
I have a whistle on my key chain in case I need help and a large bell in the kitchen to call people for dinner.     It doesn't take long to put a strobe down your nose and doesn't hurt.    They can keep it on a DVD so you can record the changes.
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh