Minna--question for you

Minna--question for you

wcl
Joined: September 19th, 2006, 11:17 am

August 11th, 2012, 10:04 am #1

Minna, I hope this is not too presumptuous of me--but would you be willing to send me your email address? My DS (age 37) has been diagnosed with a pituitary microadenoma (I posted about this a while ago), and I have several questions about what might be best to do about it at this point--including questions about fertility. I didn't realize this is your area of expertise! It would be very helpful to me if I could discuss some things with you, if you wouldn't mind too much. My email is WLewison at juno dot com.

It never fails to amaze me how much talent, brainpower and knowledge--not to mention just plain common sense-- can be found among the women here on this board, and not just about our children!

Thanks,
wcl
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Joined: April 9th, 2004, 1:54 pm

August 11th, 2012, 11:33 pm #2

Hi wcl--

I was diagnosed w/a pituitary microadenoma several years ago. Apparently, some affect the body (i.e., hormone levels, etc.), and some don't (there are medical names for the two types). Once they found it, I was sent for b/w, but it turns out that mine was the type that didn't cause any issues. Was your DS diagnosed based on symptoms? And FWIW, mine was found in a F/U MRI/exam for surgery for a different brain tumor.

Let me know if you have any questions.

--Ellen
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wcl
Joined: September 19th, 2006, 11:17 am

August 12th, 2012, 1:07 pm #3

Yes, I know you have one, too. I recall reading your post about it. And I'm very glad you're fine! I also very much appreciate your letting me know that so I will feel better, which I do.

But this is my DS, and I worry. I just want to be sure that we are not missing anything here that we will regret down the road. I'm thinking of consulting a well known pituitary surgeon here in NYC (Dr. Kalman Post at Mt. Sinai), just to put my mind at ease--if I can get my DS to go! You said you had another brain tumor, Ellen. What was that all about? What was done about it? I'm sorry, I must have missed your posts about that....

wcl
Last edited by wcl on August 12th, 2012, 1:20 pm, edited 1 time in total.
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Joined: April 9th, 2004, 1:54 pm

August 12th, 2012, 2:14 pm #4

Hi wcl--

In mid-1999 I noticed that I was having trouble hearing on my left side (sounds seemed "muddy"). I went to a very astute ENT, who ordered an MRI. Apparently, bilateral hearing loss is nothing to worry about, but it is something to be concerned about if the loss is on one side. I was diagnosed w/a meningioma, which is a benign tumor in the lining of the brain (can be anywhere on the brain). Mine was 2.2 cm (about 1"), and in a bad place -- pressing on five of the 12 cranial nerves, by the brain stem. The only option was surgery, based on the tumor's location. The risks (for me, based on its location) were facial paralysis, paralysis of my shoulders, inability to modulate my voice (which, as a singer, would have been life-altering), and hearing loss. I interviewed three different teams of surgeons (I needed a neurosurgeon AND a neurotologist, which is a neuro-ENT) -- two teams in NJ, where I live, and one at Memorial Sloan-Kettering, where a friend's daughter had just had similar surgery.

We fell in love with the surgeon at MSK (Dr. Phil Gutin) -- he was (and is) the chief of neurosurgery, and was a wonderful, optimistic guy. Though my tumor was probably benign, we thought that he was a good choice, since he had seen it all. My other surgeon (Dr. Sam Selesnick) was out of Cornell (they partner on this type of surgery).

My 6+ hour surgery went as expected, and MSK was a fabulous hospital. As a result of the surgery, I did lose the hearing on my left side, but it is almost a non-issue, even as a singer. I actually consider it a blessing, because the other outcomes would have been much worse for me. And my pituitary microadenoma was found in one of my annual F/Us for my surgery -- when examining my most recent MRI, my neurologist said, "Your meningioma is still gone, and your pituitary microadenoma is unchanged". To which I replied, "My pituitary WHAT?!" Apparently they missed it on the original films becase the meningioma was so big and obvious. I obviously wasn't pleased that they had missed it.

So, that's my story in a nutshell. I know that there are many wonderful neurosurgeons in NYC; I have been the "go to" person for any friends of friends/family who are diagnosed w/a brain tumor (which sadly, is not that uncommon). If you want to talk privately, I'd be happy to communicate with you and/or your DS either via e-mail or phone. I understand that you are concerned (I found that it is often much more difficult for those around the patient than for the patient -- my husband and mom had a really rough time).

Best of luck to your DS (and you!); let me know if you want my private e-mail or phone #. And you were right to reach out to Minna -- she is brilliant!

xox,

Ellen
Last edited by EllenNJ on August 13th, 2012, 3:40 pm, edited 1 time in total.
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wcl
Joined: September 19th, 2006, 11:17 am

August 13th, 2012, 2:44 am #5

What a story. I am SO glad you're okay now! Yes, I would love to have your email address, if you don't mind. Mine is wlewison at juno dot com.

wcl
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