Author Topic: what are some of the symptoms of AN effecting brainstem? (Read 21163 times)

sher · « **Reply #45 on:** June 25, 2008, 10:16:04 pm »

so out of this thread I didn't get much info I needed.... can we go back to the original topic?
Thanks

leapyrtwins · « **Reply #46 on:** June 25, 2008, 10:23:31 pm »

Sorry, Sher, and good point - we did kind of hijack your thread

If you go back to page 1 though, there are some very good responses.

I think the bottomline is that while there are some very common symptoms, everyone is different.

Jan

Lorenzo · « **Reply #47 on:** June 25, 2008, 10:38:27 pm »

Apologies.

I agree, there are some posts on this that refer to your question. I think though that when one asks a doctor as I did if some of my symptoms are related to the brainstem being pushed, they either don't know, or can't be sure. I have high blood pressure, but is that 'normal' or brainstem related? I choke a lot when eating certain things, is that brainstem related or not? I sleep badly and much less than I used to, what's that from? I have no answers to any of these, nor do my docs it seems. That of course does not mean that these are NOT brainstem pushing related. I must add that my brainstem is only slightly pushed, so it does not affect anything, I was told. Does it not? I wonder.

My mother died of a neurological problem, Multiple Systems Atrophy, which was explained to us as a degeneration of her brainstem. She ended up speechless, paralysed, unable to swallow, high blood pressure and high heart rate. Heart was the second last system to give up, and killed her. Breathing would have been next, fortunately she was spared asphyxiation.

I did have a friend with an inoperable 6cm AN that eventually ended up paralyzed and unable to speak and swallow and eventually breathe. She died in '04.

BUT, these are extreme cases! I just use them as an indication of the things that went wrong with their brainstem problem.

I think you need to ask the question to your doctors and see what they say.

Ciao, Lorenzo

sher · « **Reply #48 on:** June 26, 2008, 05:19:38 pm »

Lorenzo,

How big was you AN pre-treatment and what is the size now?
Thanks,
Sherry

Lorenzo · « **Reply #49 on:** June 26, 2008, 10:11:38 pm »

Sherry,

Diagnosis: 24mm
Pre-treatment: 26mm
1 year: approx 30mm
3 year mark: 22mm

Last MRI was in November at the 3 year mark.

Ciao, Lorenzo

sher · « **Reply #50 on:** June 27, 2008, 11:44:51 am »

Lorenzo,
What is that in cm's?
Sherry

Lorenzo · « **Reply #51 on:** June 27, 2008, 11:46:55 am »

Sherry,
That's 2.4, 2.6, 3.0 and 2.2cms
Ciao Lorenzo

amanda1987 · « **Reply #52 on:** July 10, 2008, 01:02:00 pm »

What size is your tumor? If it is affecting your brain stem, I wouldn't wait around. My AN pushed my brain stem over to the other side of my head. The tumor was 4cm. The brain stem controls a wide variety of things in your body. (like the respiratory system). I guess because of the size of my tumor and the pushing on the brain stem, there were complications during my surgery, and I had to have a traecheotomy. Not being able to talk for 14 days sucks. So I would get it checked out.

chelsmom · « **Reply #53 on:** July 10, 2008, 09:07:22 pm »

Hi Sher,

Here are some of the problems my daughter, Chelsea, was having before she was diagnosed. Her brain stem was displaced by a large 6cm AN.
For about 7 years she had severe stomach problems which at first was thought to be lactose intolerance then IBS. Then there were the terrible headaches she had for years-thought to be from stress. She was an outstanding soccer player but as she grew she would look a little clumsy on the field that we just though was due to growth spurts. A few months before the tumor was discovered she had some dizzy spells and blurring of her vision that lasted only seconds. Her hearing was perfect and balance for the most part was okay. When the doc's reviewed the MRI with us they just sat there and stared at it. They couldn't believe not only the size but the displacement of the brain stem. She had also developed hydrocephalus. Now, 2 years later (post surgeries and radiation) she is doing great. She still has headaches at times, SSD, stomach problems once in awhile but no balance issues or facial paralysis. I hope some of this information helps you. Due to her tumor size and location she had a lot of post surgery complications that might not have happened if the tumor had been discovered when it was a smaller, but who really knows?

Michelle

4cm in Pacific Northwest · « **Reply #54 on:** July 10, 2008, 10:23:37 pm »

6 cm and no facial problems!

That is impressive. WOW! Who did her surgery? Was it a translab?

Daisy Head Maizy

sher · « **Reply #55 on:** July 16, 2008, 11:06:52 pm »

Thank you everyone for your responses. I am just vascilating over when to do CK. I am going to see if my ENT will order another MRI for me the end of August so that I can better make my decision. Symptoms are up and down, my AN was getting close to the brainstem and am wondering if I am having more rapid growth because of different symptoms or is it all in my head. LOL. I am so thankful that I found this forum. I don't post too much but am reading and appreciating all the people here!!!!!

sher

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