hypoglossal schwannoma

[jewel01]

Hi,
I was just diagnosed in January of 2005 with a left hypoglossal schwannoma, which is a tumor
of the left cranial nerve 12, that affects the left side of my tongue.  This is one of the rarer nerve
tumors and I as of yet have found anyone who has or has had one to talk to. 
If anyone out there knows of anyone with this type of tumor please have them email me
at jewel01@mhtc.net.  Just this week Madison, Wisconsin UW Clinics did a angiograph CT
and also found that my vertebral artery is pressing on my brain stem on the upper left side.
There is also a possibity that there may be a mass that is pushing on this area as well. They could net tell for sure by the scan due to its location. I have alot of symptoms and the NeuroSurgeon stated that their facility does not have the expertise to be able to treat the hypoglossal schwannoma.  I am looking into the House Ear Clinic and will be sending Dr. Brackmann my scans.
He has done a few of these types of surgeries only because they are so rare.
Has anyone had a tumor that was pushing into their brain stem???
I need some help here everyone.

Thanks
Julie W.

[Russ]

Dear Jewel
  Brain stem impaction by tumors is relatively common and better treating facilities as HEI are most qualified in dealing with such. Sometimes there are residual cognitive problems post op. Each is individual.
  Re: Hypoglossal tumors and individuals, I'll have a look around the www. Maybe join www.coollist.com and ask those knowledge people.
   Russ

[jewel01]

Thanks for your reply Russ. I just got an email from UW Wisconsin regarding my diagnoses that I received last week and Dr. Badie stated that I have a vertebral artery compression of the brain stem which is also on the left side. This is the same side as my hypoglossal schwannoma.
He is suggesting that I go to DR. Jenetta in Pittsburg, Penn. he is a vascular neurosurgeon.
He also stated that vertebral compression is not seen in alot of people. Makes me wonder why
I have two very serious brain conditions. The thing is that they say that my "symptoms" are not concurrent with this type of condition. Well I know that what I am feeling is real and it is affecting my life.  Dr. Badie has talked to their radiation oncologist and he feels I would be a good candidate for radiosurgery of the hypoglossal nerve. I don't know. I talked with Dr. Brackmann from the
House Ear Clinic and he has only done a few of these tumor surgeries, because there are only a very few of us who get them. He stated they were all treated surgically. I have ALOT to think about and lots of information to sort through. Barb Pease from the Wisconsin ANA Chapter has been a god send to me.

Any input for anyone much appreciated.
Julie Wachter
PdC, Wi.

[Russ]

Hi
  I couldn't find much re: Hypoglossal tumors,  except they are quite rare indeed. With the limited experience HEI has with them and if Drs opinion in PA, does not highly recommend irradiation, will you still prefer trying that first?
  The situation makes me nervous. I can't imagine what you are going through.
  Best wishes to you in every way!
  Russ

[jewel01]

Hi Russ,

Thank you so much for helping to find info. on hypoglossal tumors. Thats the problem there
are a very few of us with them. Who did you speak to or how did you find out not to have
radiosurgery done for this?? My gut feeling is not to have radiosurgery, so this is not going to be an option. I think the Dr. who stated he could do it, just wanted to experience his first hypoglossal
tumor with Gamma knife. I am going to try to contact House Ear again and see if they would PLEASE link me up with the "few" people that they have done surgery on.

Not having anyone to compare my tumor with is disheartening.  All of the wonderful information
the the ANA people are putting out there is awsome. That is where finding the right doctors and the right clininc is going to be easier than finding similar patients.

As far as the vertebral artery compression I know nothing about this. I don't even know where to begin finding similar people who have had this.  I am concerned also that this could cause some
long term memory loss or some other type of emotional disorder. I already experience the feeling
of "not remembering what I did yesturday without really having to think about it. It is just a weird feeling, hard to explain to others. I don't enjoy being around large groups of people anymore, feels to overwhelming to me. I used to be able to party with the best of them. ha/ha
I don't like alot of stimulus. Can't stand trying to do something with someone talking to me.
I take worry to an alltime high. I freak out over the littlest things with my kids. Kind of gets like
weird thoughts of something is going to happen to them and so I won't let them do alot of things.
I don't know if it means anything or not. Maybe I am just a paranoid mother, who goes overboard!!

Thanks again for your response.

Choosing Peace
Julie W>

[DetSgt224]

Hi Juilie,

I am recently diagnosed with an AN that is pressing severely on my brain stem.  My neurosurgeon felt that radiotherapy was too risky to the brain stem, but that is due mostly to the size of my tumor.  Personally I don't like the idea of radiation hitting my brain in any manor so I was not disappointed.  My prayers are with you on this deal.  I have heard very good things about HEI, but it sounds to me like Pennsylvania is where you want to go.  My best to you in your future.  Please stay in touch.

Travis
Surgery scheduled of June 7
3CM AN

[jewel01]

Thanks Travis,

My prayers will be with you on your surgery date. I just received my CT radiology report as I wanted
to know up front what the Radiologists were seeing. I seems that when they compared it to my
MRI scan from 12/1/04 the radiologist report stated "it represents an atypical schwannoma with
slightly aggressive features." So i am Assuming that the tumor has grown since December.  Just my luck!! Then the report stated that I have a "scalloped appearance fo the adjacent left midbrain which is of uncertain etiology. This may represent a normal anatomic variant.(BULL) my words,
or he stated "Alternatively this could represent an arachnoid cyst. It is directly adjacent to the enlarged hypoglossal canal and may be related to this process as well."
SOOOOO here we go again. I thought that these scan were suppose to "tell all", but apparently not in my case.  So I will wait to hear from the Doctor in Pittsburg which I hope to God he gets back to be ASAP so I will know if I have to go in a different direction.

Maybe I will get lucky one of these days and Dr. Brackmanns team at House Ear will be able
to do something about both of these findings.

I agree I don't like the idea of radiation either. Not unless there have been thousands of patients with the same exact tumor I have that have had success. I know that is not going to happen.

Best wishes to you on your surgery date,

choosing peace,
Julie W

[DetSgt224]

I am praying for you Julie

[Karla]

Dr. Thomas Graham, in Tyler Texas.   903-595-2441.  I have a 2.5 pressed against my brain stem, entangled in my 7th and 8th nerve.  I was borderline on being able to receive radiation, due to the size of mine. But, my radiation treatment was successful. He is an outstanding doctor!  All my hopes to you.  Karla

[jewel01]

Karla,

Thank you so much for sharing your Dr. name and phone #.  Is your tumor an AN, or another
type of tumor??  Are you having any type of symptoms from this pressing on your brain stem??
My eyes go blurry at times and I have a hard time concentrating on more than one thing at a a time. I also experience pressure in the mid to lower occipital area. I had a rough day yesturday, almost had to make a trip to the emergency room for some meds to take away the head pain and burning that just would not go away with over the counter pain reliever. Finally after sticking it out from 4:00 a.m. to noon it subsided enough so I could get up and move around.
I just don't know what is causing what and when I should take my HA a little more seriously.
What type of radiation did they do and how much less is your tumor?

I know,  alot of questions and not quite sure how to ask them.

Thank you,

choosing peace,
Julie W.
jewel01@mhtc.net

[Sheryl]

Julie - Even though I do not have an acoustic neuroma, I have been part of this board for the past 3-1/2 years.  I have a schwannoma of the 9th cranial nerve (also told it was rare) which would affect my swallowing , gag reflex, and give me a hoarse voice.  I have  been a "wait and watch" patient with the tumor starting at 9 mm and recently measured at 12 mm, but with no pressure on the brainstem.  The neuroradiologist told me he thought the first reading at 9 mm was "under-read" and that a few mm's over 3-1/2 years is not significant.  It could be due to different technicians, different machines, etc.  I have been watching it and any symptoms (none that I can detect) very closely and would opt for radiation if it grew to affect me.  I was told it was in a difficult spot to get to surgically.  The other factor is recent surgery for breast cancer (no relation to what's going on in my head) and having my husband have surgery on another type of benign brain tumor called a meningioma.  So, my plate has been "full", but we take one day at a time and, as both of our MRI's recently were favorable, have been enjoying this break from medical issues.  Good luck to you and keep us posted.

[wanderer]

Don't worry to much about areas of uncertian origin.    When I was diagnosed with my AN in october of last year the MRI came back with a spot on the thalamus.    The report read that while uncertian it was possibly a glioma.    That would have been very bad news.   When I went to all the doctors they all said it as most likely nothing.   The heural surgeon told me that there was definitely something there but what it was they had no idea and nobody could tell me.      He said that radiologists are overly cautious about pointing out anything for fear of being sued.

the next MRI done on the same machine came back with the same spot.  with no change,  but this time they said it could be a few different things, but no mention of glioma.   the neuralsurgeon looked at it and said,  it hadn't changed.    I'll keep getting scans once a year just to check on it,  but that it hasn't changed in 6 months apparently puts their minds at ease a bit.

You may want to contact the mayo clinic as well.   They study brain tumors and such and could probably give you some good information too.   

[jewel01]

Thanks to everyone for sharing your experiences.  I am currently waiting to hear from House Ear
Institute, Dr. Brackmann. He has contacted me on a couple of occassions and the last call was a week ago when he received my MRI and my CT scans. All he said was"as you already know, you are a very complicated case". He is going to confer with another NeuroSurgeon and go over my scans with him/her and call me this week with a game plan. I hope. I think for the moment the more serious problem is that my vertebral artery is compressing my medula and causing my body some grief.  I am waiting on contacting Dr. Jennetta in Pittsburg regarding the compression, until I hear from Dr. Brackmann.  Dr. Jenetta already contacted me and wants me to come out for a consultation. I had a 48 hour heart holster this week and an echocardiogram yesturday for some funky things that my heart is doing. The nurse caught one of my heart racing episodes on the echo, so that is a good thing. I will get results next week. I now have a constant twitching under my left eye, which can be annoying. I see the Neuro Optomalogist next week to get my vision checked. I have occassional blurry and not able to focus vision with left head pressure. My eyes tend to jump around at times.

I am not a canidate for Gamma knife or any other type of radiation do to location. I had 2 top Neurosurgeons already tell me that.

Anyway my spirit is high and I just know that all will be well when this is all said and done.

Choosing Peace
Julie W. in Wisconsin