Author Topic: What to do??? Son also just diagnosed with meningioma  (Read 12806 times)

Glenda

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Re: What to do??? Son also just diagnosed with meningioma
« Reply #15 on: July 25, 2011, 08:41:08 pm »
Thank you Thank you my dear sweet friends!! You are the Greatest and have made me feel better!!  This is so hard. I talked with my son earlier.  He had his hearing test today and he has problems with speech recognition and low tones.  He has no tinnitus just hearing loss.  Does this happen with AN's?  I know I have pretty bad tinnitus and my loss is high tones.  He may have a meningioma??  I again ask him to question this Dr about how many surgeries he had done and to make sure he was comfortable with him.  I told him I wanted someone with experience operating on my baby  :) (even if he is 34) :D.....he said one of his friends who is a Dr said this is the doc he wanted but I am still skeptical as I have never heard of him and do not know anyone he has done surgery on.  I googled him and the only thing I found was one patient who said he saved her life and even though she had complications he was there with her each step of the way....I don't like "complications" and I know that you could still have them with even the best Dr's, I guess just a mother's concern.  I want the "BEST" for him.  Thank you Sheryl for the concern and the suggestion about the posts.  I think I will copy a few of them and give them to him and then I will back off and pray for the best...... Jim, as always thank you for your wise advice, your advice is one that I want to print for him.  It's funny you mentioned gall bladder surgery though, I had gall bladder surgery in November and thought that it would be just a simple surgery.  I didn't check this Dr out as again I thought this was a simple surgery.  He cut my bile duct and after coming home I was in intense pain, ended up in the ER for 5 hours and transported by ambulance to a hospital in Charleston SC an hour and a half away to have a stint put in and was there for 4 days.  It was the worst pain and I wasn't sure for awhile that night if I would make it....I guess any type of surgery can go wrong.  I have learned that I want to check out any surgeon that does any type of surgery on anyone in my family!  My husband had his trigimimal neuralgia surgery at MUSC in Charleston with Dr Sunil Patel, who I did research and who is an excellent neurosurgeon.  He had very good results and we are very thankful!  Again.....thank you all!! I appreciate you all so much!!  and Kay....thank you so much for the phone call and the pep talk!! I love my AN friends!!

Glenda
Diagnosed 5 mm AN  Jan 2008
Deep in IAC
June 2010 7 mm
July 2011 8.5 mm
July 2012 1.1 cm
Nov 28, 2012 Mid Fossa Surgery Wake Forest Baptist Hospital-Winston-Salem NC, Dr John Wilson and Dr Eric Oliver


SSD tinnitus dizziness

CHD63

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Re: What to do??? Son also just diagnosed with meningioma
« Reply #16 on: July 26, 2011, 08:20:38 am »
Glenda .....

It does sound like you have done everything you possibly could to shed some light on this process to your son.  Wake Forest Med Center is well-known for its expertise and success with Gamma Knife.  I do not know anything about the neurosurgeons there but I do know it is an excellent medical facility.

Prayers continue for him being led to the right doctors for the right treatment and good results.

Please keep us up to date on how things are going with all of you!

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

Glenda

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Re: What to do??? Son also just diagnosed with meningioma
« Reply #17 on: August 13, 2011, 06:50:17 pm »
Hi all,

Just wanted to update you on my son.  He has chosen to go ahead with surgery at Wake Forest Baptist. His neurosurgeon will be Dr John A Wilson and otolarynologist Dr John S May.  I still have not found anyone who has had surgery with this team.  Please join me in prayers for these doctors as well as for my son.  His surgery is schedule for Aug 31st.  I must tell you I have shed many tears.  It is so hard to see your child go through this.  He is only 34.  So young.  Dr Wilson told him it is an acoustic neuroma not a meningioma.  My son, Terry,  told Dr Wilson about me having one and he said he could not prove it but thought it was probably heriditary.....My father had tinnitus and could not hear well but he passed away from cancer and I never could get him to go see about his hearing.  ???  I don't know....from everything I have read it says it is not hereditary.  I'm just praying for the BEST!!

Thank you friends!
Glenda
Diagnosed 5 mm AN  Jan 2008
Deep in IAC
June 2010 7 mm
July 2011 8.5 mm
July 2012 1.1 cm
Nov 28, 2012 Mid Fossa Surgery Wake Forest Baptist Hospital-Winston-Salem NC, Dr John Wilson and Dr Eric Oliver


SSD tinnitus dizziness

Sheryl

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Re: What to do??? Son also just diagnosed with meningioma
« Reply #18 on: August 14, 2011, 01:28:50 pm »
Thoughts and prayers will definitely be with you and all involved.  Our son is 39 and with both hubby and I having brain tumors, I am very frightened that it might show up in our son - I don't know how I would deal with it. 

Please keep us posted,
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

Glenda

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Re: What to do??? Son also just diagnosed with meningioma
« Reply #19 on: September 06, 2011, 09:20:05 pm »
Great news!  My son had his surgery last Wednesday with Dr Wilson.  He is doing really good.  He was able to remove the entire tumor with no facial paralysis.  He does have some numbness on that side of his face and tongue but the Dr thinks it is temporary.  I met the Dr and really liked him.  He thinks we probably have NF2 since both of us have AN's. He said just too coincidental but I'm praying he is wrong.  Thanks for the support!

Glenda
Diagnosed 5 mm AN  Jan 2008
Deep in IAC
June 2010 7 mm
July 2011 8.5 mm
July 2012 1.1 cm
Nov 28, 2012 Mid Fossa Surgery Wake Forest Baptist Hospital-Winston-Salem NC, Dr John Wilson and Dr Eric Oliver


SSD tinnitus dizziness

Jim Scott

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Re: What to do??? Son also just diagnosed with meningioma
« Reply #20 on: September 07, 2011, 03:05:10 pm »
Glenda ~

Congratulations on your son's successful AN surgery!  I wish him a complete, rapid recovery.  Please keep us updated.  Thanks.

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.

CHD63

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Re: What to do??? Son also just diagnosed with meningioma
« Reply #21 on: September 08, 2011, 06:04:26 pm »
Hi Glenda .....

Thanks for the update.  All sounds good at this point.

Keep us up to date on the NF2 ..... did they test either one of both of you?

Many thoughts and prayers continue.

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