what are some of the symptoms of AN effecting brainstem?

[sher]

I am wondering if anyone knows what happens when the AN effects the brain stem?
Thanks,
Sherry

[tony]

I guess the answer is : it depends
The most common effect is a poor balance, almost
drunk like walk or movement.
Others would talk of headaches or feeling sick
A whole new batch would involve the part of the body
which that nerve (the bit being compressed) looked after
So maybe the left foot is a bit numb or not as fast/strong
moving as the right side
In most cases, if the compression is minor the effects are
gradual and minor(these things grow at 2mm per year ?)
 - its the massive swelling post car-crash or similar
that can dangerous
Overall its how big is the tumour, how quick is it moving
and where is it compressing (and how tight is the space
at that particular point)
Best Regards
Tony

[Tumbleweed]

Not to purposefully try to scare you or anyone else, but I would add that the brain stem takes care of a lot of the body's higher functions. If I remember correctly, these include pulse rate, blood pressure and breathing (lung function). So an untreated and growing tumor eventually kills by destroying the brain stem's ability to provide these critical functions, although this typically takes decades. The tumor would typically have to be absolutely enormous to have this effect on the brainstem, and they only grow on average 1-2 mm per year (some don't grow at all after being discovered). Unfortunately, some grow faster than average. Mine grew 2-3 mm along each of the three axes of measurement in just under 6 months. When my first followup MRI (taken in May) revealed my tumor was now pressing against my brain stem, that prompted me to stop watchful waiting and schedule treatment.

I guess I've won the s**t lottery twice. First by getting a tumor that only 1 in 100,000 people get (like everyone else on this board) and second by having one of the relatively few that show accelerated growth.

Sorry to vent. I get CK in less than three weeks and am a bit highstrung over it.

Tumbleweed

[shygirl]

Hi Sher-

My tumor was pressing into my brainstem and it affected my heart rate, balance(I was like a bull in a china shop), I did feel sick a lot, My arm & hand would "fall asleep" for no reason, I dropped things all the time--it was like my hands would just let go, and I was always very tired. Not sleepy, just "drained". No hearing issues except for the occasional ringing when you say "someone's talking about me". And no headaches. Now, I am more graceful, I haven't been sick at all since surgery, My arm doesn't go to sleep, I don't just drop things anymore and I'm not tired all the time.

That's just my experience with brainstem involvement.

Sincerely,

Shye

[HeadCase2]

Hi Sher,
  Great question!  From reading about AN patient experiances here on this forum, AN symptoms can vary widely between individuals.  With a host of things along with the "normal" hearing and balance issues.  My AN was tucked up in the CVA angle, so it was next to the brainstem.  And I had several "aura" episodes, where an arcurate shape flashed in my field of vision with an odd geometric pattern (Scintillating Scotoma, http://en.wikipedia.org/wiki/Scintillating_scotoma ).  I had about 5 of these episodes, and they would last about 30 minutes.   I had one aura event about 10 days after surgery, and none since.  So I don't know if the AN pressing slightly on the brainstem was causing the aura, or if it was serendipity and related to something else.
Regards,
  Rob

[Kaybo]

Sher~
My brainstem was all the way over to the left side of my head - I had a LOT of symptoms, but didn't know it.  My balance was awful - I could be standing with a group of teachers at recess and I would just stagger back!  WEIRD things too, though, that didn't happen after surgery LIKE:  I was SUPER susceptible to strep throat - I would get it ALL the time (the other teachers would send me notes not to come to their rooms if a kid had gone home sick - this was BEFORE I was diagnosed) - they even had to postpone my surgery because I got it!  Have NEVER had it since!!  Isn't that weird?  Also, I had a HORRIBLE pain in my left shoulder - couldn't carry anything on that arm - we went backpacking the summer before I had surgery and I couldn't even carry a backpack!  Don't have that problem now!!  I think all of that was because of the brainstem displacement.  Mine was pretty severe & I had surgery within a week of being diagnosed...my brainstem is still a little (but not like it was) to the left!!

K

[lori67]

Hi Sher.

I had high blood pressure and an irregular heart rate as a result of my brain stem looking like the letter "C".  I had been treated with medication for a few years to control both, but no one ever bothered to find out the cause of these things.  Amazingly, since surgery, and my brain stem looking more like the letter "I", I no longer have high blood pressure.  I still take the medication to regulate my heart rate, but that's only because I'm afraid if I stop taking it, I'll have the horrible palpitations and racing heart I had before.  Once I get over my fear, I'll try to wean myself off of that.

And, Kay, I guess you'll always be a little askew!!   

Lori

[HeadCase2]

 One of the indicators of brainstem involvement may be an escalating number of unexplained new symptoms.
Rob

[lori67]

One of the indicators of brainstem involvement may be an escalating number of unexplained new symptoms.
Rob

Rob, are you a lawyer or a politician, by any chance?    That really makes things crystal clear!   

Lori

[leapyrtwins]

One of the indicators of brainstem involvement may be an escalating number of unexplained new symptoms.
Rob

Rob, are you a lawyer or a politician, by any chance?    That really makes things crystal clear!   

Lori

Well, Rob did say that "AN symptoms can vary widely between individuals" and that was very clear    Plus he was absolutely correct! 

I'm just amazed at the different symptoms people had prior to being diagnosed.  Other than diminished hearing, a feeling of fullness in my ear, and some balance issues I was not even aware of I didn't have any "unusual" symptoms.

Jan

[Jim Scott]

Sher:

According to the MRI, my AN was pressing hard on my brainstem but aside from SSD, my only other symptoms were acute disequilibrium, fatigue and a loss of the sense of taste.  The neurosurgeon told me that my brain was pushed to one side of my skull and that CSF 'gushed' out when he made the incision that opened my skull, because the fluid was so compressed.  Fortunately, none of this caused me any post-op problems.

I have long known (from earlier research and reading posts on these forums) that AN-related brainstem compression has many symptom variations in individuals.  Symptoms are only an indicator that an MRI is required.  The MRI tells the doctor what is actually happening.

Jim

[sabuck]

Sheri,

My AN was visibly pushing in on my brainstam on my MRI but I don't recall any symptoms other than the hearing loss and a few bouts of vertigo. Well...maybe a little stiff neck but that was it.
Like Tumbleweed said though, the brainstem is a crucial juncture in the body. A friend of mine that is an ER doc said that one of the first things that they learned in med school was that the brain stem is sort of like the bodys 'on-off' switch. If it gets cut off, so do all of the involuntary organs below like the heart, lungs, kidneys and all of those other sort of essential thingies. 

[TP]

My tumor was on my brainstem. I had some minor balance issues, had neck pain for about a year and started to lose my hearing but otherwise I felt I had good health. The brain tumor was pressing against my spinal cord and causing the neck pain. I did have a bump on the back of my head for years and it no longer is there so I would assume that bump was from the tumor. The dr never would confirm that.

[Tumbleweed]

Now that I think of it, I have had heart palpitations and shortness of breath on rare occasions (but happening a little more frequently now) for the past several years. Perhaps this has been caused by the tumor. Another wierd thing is that I seem to be getting more clumsy. It's as if I'm not quite in my body and aware of where my body is in the surrounding space. I'll walk into a room and hit my hand on a chair or table as I walk by it. And I find I'm starting to drop things more. I'll pick up a pencil and it'll fall out of my hand, and I wasn't even aware that my grip wasn't tight enough.

Most of these symptoms (with the exception of the heart palpitations) are subtle, making me question whether I'm just reading too much into general clumsiness. But I wasn't this clumsy a few years ago.

The more I learn and realize about my condition from reading posts on this board, the more resolved I am about getting treatment in a couple weeks. But it scares the hell out of me to think about getting radiation treatment. I suppose the alternative (doing nothing) is even worse.

Tumbleweed

[sgerrard]

Another wierd thing is that I seem to be getting more clumsy.

I think the clumsiness is quite common with ANs, and generally results from effects on the balance nerve. I still manage to bump against door frames fairly regularly when I'm walking quickly and (try to) turn sharply into a doorway.

I wouldn't be that scared of the radiation treatment. It is a very high tech procedure, and the radiation really is focused on the AN, which deserves to be blasted by it. The side effects are mostly mild. It'll go well.

Steve