A Serious Problem

Gloria · Post by **Gloria** » Tue Jan 05, 2010 5:19 pm

I recently had a series of tests to determine my potential for having a stroke. I've always been concerned because both of my parents had strokes in their 60's. The good news is that the tests didn't show any buildup of plaque in my carotoid arteries and I'm not at risk for having a stroke. I haven't posted anything because I've been waiting for a firm diagnosis.

The MRI of my brain, however, revealed a tumor, a little larger than a grape, pressing directly against my brain stem. The tumor is likely not malignant, but it's not possible to be sure without surgery. It's not in a location that easily allows for a needle biopsy. I originally thought that I could just wait and see if the tumor would get any larger, but the neurosurgeon said that if it does get any larger, surgery becomes much more complicated. The only place for the tumor to grow is to press further into my brain stem. The brain stem controls the central nervous system: balance, coordination, vision, breathing , etc. It's likely that the tingling I've had on my face and tongue are due to the tumor pressing on the brain stem.

When I first saw the neurosurgeon, he said that they normally don't do surgery - only as a last resort. After seeing the latest set of MRI slides, he is recommending surgery, and is recommending that I have it done in the next several weeks. I am going to get a second opinion, of course. The potential complications from the surgery are serious. Optimistically, there will be no complications. There can be serious complications if the tumor grows and presses even more into my brain stem.

I will be doing a lot of praying as I make my decision and I am asking for your prayers that I'll be able to make the correct decision. I will need more prayers if I decide to have the surgery. I also need to make sure that I am choosing the correct neurosurgeon.

(The first thing I did after the appointment today was eat 4 pieces of chocolate. I figured - what the heck!)

Gloria

adelie · Post by **adelie** » Tue Jan 05, 2010 6:07 pm

Gloria,

Eh Gad! My prayers will certainly be with you through this ordeal. With technology these days, the surgeons can get to places they never could before. As you mentioned, multiple opinions are always a good idea with something as critical as the brain stem. The more people you talk to, the more options seem to become available. A good friend of mine had to have tedious brain surgery a couple of years ago for seizures resulting from a brain injury. He ended up traveling to a specialist in Birmingham, Alabama for his surgery and came out better than expected!

:bigbighug:

Karen

Stanz · Post by **Stanz** » Tue Jan 05, 2010 6:25 pm

I am so sorry to hear this, Gloria. This is certainly not what you wanted to hear as the cause of your symptoms. I will keep you in my thoughts and hope that you will be at peace with what you decide to do and that you have the best possible outcome.

Jan · Post by **Jan** » Tue Jan 05, 2010 6:49 pm

Gloria,

You are added to my prayer list. I will ask that the Good Lord guide your surgeon on the biopsy and that the results come be benign.

Jan

Post by **Rosie** » Tue Jan 05, 2010 6:56 pm

Doggone it Gloria, not the sort of news you wanted to hear. It sounds like you are on the right track with getting a second opinion and finding the best neurosurgeon. I think that our experiences with doctors and our MC have made us much more assertive about our health. I sure hope that you can get this resolved!

Rosie

Polly · Post by **Polly** » Tue Jan 05, 2010 7:05 pm

Oh Gloria,

What a shock this must have been! I agree with the 2nd or even 3rd opinion. Also, if possible, try to find out what hospital in the country has the best and most experience operating on the kind of tumor that you have. Of course, I will be sending positive thoughts and prayers to you.

It does sound as if you may have to go ahead with the surgery sooner rather than later. As you correctly pointed out, the brain stem is responsible for many critical functions. Terrific success stories are occuring daily with modern neurosurgery techniques and equipment, so I think you have every reason to be optimistic.

Love,

Polly

JLH · Post by **JLH** » Tue Jan 05, 2010 7:14 pm

Wow, Gloria, I'm so sorry to hear your news. I hope and pray for the best possible outcome.

:bouqueofpinkroses:

LOVE,

Pat · Post by **Pat** » Tue Jan 05, 2010 8:25 pm

Gloria,

You are definitely in my prayers. It was a year ago(Feb 3) that my great nephew had his brain surgery. He is great now! I know you and many others were praying for him. I certainly appreciated all of you. Keep us informed!

Pat

connie · Post by **connie** » Tue Jan 05, 2010 9:22 pm

Dear Gloria,
I second everything Polly said and I too will be praying for you. You have come through so much and I admire your strength.
God bless you and your family.

Connie

Post by **tex** » Tue Jan 05, 2010 10:26 pm

Hi Gloria,

I'm sorry to hear of that discovery, and that you have to make such a major decision on such short notice. If it will help any, (as per Polly's suggestion), here is a ranking of the best neurology & neurosurgery hospitals in this country, according to the U.S. News & World Report 2009 rankings:

http://health.usnews.com/health/best-ho ... -rankings/

As you can see, the top 6 are far ahead of all the rest, regarding their ratings in this report:

#1. Mayo Clinic, Rochester, Minn. http://health.usnews.com/health/best-ho ... urosurgery

Note that not only was the Mayo Clinic rated number 1 for neurology and neurosurgery, but it was also ranked number 1 for digestive system disorders.

#2. Johns Hopkins Hospital, Baltimore http://health.usnews.com/health/best-ho ... urosurgery

#3. University of California, San Francisco Medical Center http://health.usnews.com/health/best-ho ... urosurgery

#4. Massachusetts General Hospital, Boston http://health.usnews.com/health/best-ho ... urosurgery

#5. New York-Presbyterian University Hospital of Columbia and Cornell http://health.usnews.com/health/best-ho ... urosurgery

#6. Cleveland Clinic http://health.usnews.com/health/best-ho ... urosurgery

Note that the Cleveland Clinic was rated number 1 for heart and heart surgery.

Here is the complete report:

http://health.usnews.com/health/best-ho ... -links:TOP

I hope this helps. You will certainly be in my thoughts and prayers.

Love,
Tex

harma · Post by **harma** » Wed Jan 06, 2010 3:19 am

Hello Gloria, how terrible, how awful to hear you have a brain tumor. I am really sorry to hear you have to face this really serious health problem. I wish all the best in finding the right doctors and help to get the best treatment for this horrible problem. After hearing news like this, yes girl you are totally right and eat some chocolate. Eat some more if you feel like it.

harma

MaggieRedwings · Post by **MaggieRedwings** » Wed Jan 06, 2010 6:09 am

Morning Gloria,

I am so very sorry to hear about this and you are always in my prayers but more so now. I agree with Polly and the references that Tex sent are definitely ones to consider. Go to the best and get the best care - this is not something to fool around with. Last year when I had my brain MRI done, I think I felt just like you did waiting for the results. Luckily in my case, it was nothing - sorry to hear yours is not that case.

Love, Maggie

Bifcus16 · Post by **Bifcus16** » Wed Jan 06, 2010 7:28 pm

Hi Gloria,

So sorry to hear your news. It must be very worrying for you.

I am sure you will tackle this with the same optimism and thoroughness you have applied to dealing with your mc and come out the other side smiling.

Tex's info sounds like a great resource. Best wishes for finding the right doctors to help you through this.

You may want to look at the UK group CancerActive as a source of alternative info. They have some interesting approaches to complement the 'gold standard treatment' you will get from your doctors. http://www.canceractive.com/cancer-acti ... n%20Cancer

Love, Lyn

Gloria · Post by **Gloria** » Wed Jan 06, 2010 8:02 pm

I appreciate your suggestions and prayers. I've been researching my options today. I think it's a foregone conclusion that I need to have the surgery. It's pretty intricate and delicate surgery due to the location of the tumor. I think I need to have an expert do the surgery. I'm leaning toward the Mayo Clinic, but it's not in my PPO. I'd have to pay 40% of the hospital cost, according to the insurance rep. I'm still checking to see if the doctors are part of the PPO. This is expensive surgery.

My brother says I should try to get a referral to Mayo, but I don't think any neurosurgeons would give me one. They feel that they're qualified to do the surgery themselves.

It's going to be necessary to cut away parts of my skull to do the surgery. It just occurred to me that I've been on Alendronate for about 10 months. I'm worried that the skull won't heal as quickly because Alendronate inhibits new bone growth. I'm going to stop taking it.

I have an appointment with another neurosurgeon in the area next Tuesday for a second opinion. I can't have the surgery until I'm completely over the pneumonia and I was just diagnosed with it 10 days ago.

We have reservations to go to Disney World with DD#2 at the end of February - I have a feeling we'll need to cancel our plans.

My MC is starting to act up. I'm hoping it's due to eating some high fiber foods this past week, such as acorn squash, yams, and corn (my SIL made it "just for me" at our family gathering on Saturday.) I hope I can keep it under control for the surgery. I'm worried about how I'll eat in the hospital, but people are saying I'll be on liquids. Life would be much less complicated without MC.

Gloria

barbaranoela · Post by **barbaranoela** » Wed Jan 06, 2010 8:28 pm

gloria----our prayers are with U and your family-----I wish I had the perfect words to ease your worries--

Mayo is highly recommended for this surgery---

my friend Carmen has your name in her prayer chain!---

:bigbighug:

for U
luve Barbara