a little scared and would just like to talk.

[Mousiez]

ok, since my memory is TOAST from 43 brain surgeries due to a tectal glioma(yes,I know it's really really rare, but it's what I got) causing lots of problems....I just need someone who has been through this to help me. This is not a joke,I am not lying, or some idiot trying to kid around.
I was diagnosed with the neuroma two years ago, I was not sent to an oncologist or neurosurgeon, nothing was done.
Nothing has been done since.
I have problems hearing (yeah, and being told by someone that 'we knew something might happen like this, maybe you'll go deaf' doesn't help, it makes me angry) and I get told I am not paying attention, I have trouble understanding things, again, I get told I'm either being 'rude', or 'not paying attention'. My ears ring, or feel like they are stuffed with cotton, my headaches are worse than normal (I'm on major pain meds anyway, but nothing helps anymore), and I feel like I've been ignored. Not by you, but by this doctor here in Idaho(GP infectious disease doctor), and by the people who originally did the MRI and did not inform me something was there.
 I'm not angry at the world,just scared, and would like someone to tell me what I should do.
Wait and see is great, but when I have problems, what should I do?
thank you

[Sue]

Hi
I'm probably not the right person to try to help you through this, since I had GK for my problem and haven't gone through the experience of brain surgery. But I do feel very badly for you and what you have been going through and I'm sorry you have been having such a hard time and little to no support from your "medical team".  I hate to say this, but is it because you are in Idaho and not in some major metropolitan area where there are more and probably better medical facilities and doctors?  Nothing against Idaho, now...I live right next door in Washington, but certainly for medical conditions such as you have experienced it would seem like a good idea to look elsewhere for your medical needs, like Seattle, or Denver, Mayo Clinic or even Portland, if possible.  Unless, of course, you've already done that. If I had the power to transport you to the best medical facility for you, I sure would do that. But it's easier said than done - not everyone is able to endure the expense of traveling the country far and wide seeking the top dog to treat them.  With all of your past experiences, some doctor might help you out just so they could write you up in a medical journal!!  I can't imagine what you have gone through for most of your life. It may be to your advantage to find a therapist in your area for you to talk to also. Me feeling sorry for you doesn't help you much and you need to find somebody who can give you some real answers to your questions. Hopefully somebody else on this forum will be able to address your questions better or guide you to somebody or some place who can.  I do urge you to try to find professional help, and I hope you will look into seeking a consultation with a really, really good AN expert. I wish you the best of luck and please don't give up or let the doctors give up on you.  That's not right and sounds unethical to me.   

Sue

[Jim Scott]

Mousie:

Welcome!

Being the curious type, I looked up 'tectal glioma'[/color] - and learned that they are usually found in children, as the following information states:

"A tectal glioma is low-grade tumor arising from a type of cell of the central nervous system known as a glial cell. These tumors originate from a specific type of glial cell known as an astrocyte. Astrocytes make up a supportive structure of the brain and spinal column. They are named for their star-like appearance.   Most children with tectal gliomas are between the ages of 3 and 16 years.

Medical research has not identified a genetic cause of this tumor. Tectal gliomas appear to develop spontaneously, meaning there is no identifiable cause.

Due to the very delicate structures surrounding the tectum, surgical removal of the tumor is limited. Management of increased pressure within the brain is often accomplished by surgically inserting a device (a shunt) or by a third ventriculoscopy (the endoscopic creation of a pathway for cerebral spinal fluid to drain into the third ventricle) to drain excess fluid accumulating within the brain.

The use of chemotherapy and/or radiation therapy is generally not indicated. Children with tectal gliomas are followed for evidence of progressive disease through frequent MRI scanning (approximately every 3 months initially).

Tectal gliomas are associated with a high rate of cure.  Many children will demonstrate an increase in tumor size by MRI, however most will remain asymptomatic and not require further treatment other than serial MRI scanning."[/color] 

This information is from the website of the Children's Hospital Boston[/color]   http://www.childrenshospital.org

I simply typed in 'Tectal Glioma' on their search engine.


I have to wonder why you were made to undergo, as you state, "43 brain surgeries' (presumably, as a child) for a condition that is basically benign and that is asymptomatic for those who have it.  In any case, it would seem logical and prudent at this point to consult with a neurosurgeon and have an MRI scan.  Good luck!.

[ppearl214]

Hi Mousie and welcome! Oh, we are sooooo here for you.

I have to thank Jim for sharing this with us... as this situation and Boston Children's is very dear to me.  As many here know, back in 1969, I lost a 13 year old sister to an astrocytoma.  She was in Boston's Children's for 2 mos before we lost her.  Yes, childhood growths.  You, my dear, bring happy tears to my eyes, that even though we lost Robin, you, my dear are fighting and doing all you can for wellness... and for that, I admire and commend you! :)  As Jim notes, tectal tumors like your's have an exceptionally high rate of curability.  That is what you need to remember.  I marvel how far modern medical technology has come since 1969... I even thank my sister, Robin, for helping to bring Cyberknife treatment into the medical world as if it weren't for people like her.. or you... these treatment options would not be available to me...or to us.

Now, hear me on this... YOU, my dear, are FAR beyond that and you show such courage and strength for ALL you have endured!  We WILL help you get through this.  I am not sure what is available out your way or where you have traveled and such for your health... but so many of us here can share with you physicians, ideas, thoughts, etc.  Do you have copies of any/all of your MRI's? What kind of dr's are reviewing them?  We WILL find you a dr that WILL listen to you.  If you want to come to the "good" coast, you let many of us New Englanders here know.. we will get you in with the best!

Sending major huggles... and Mousie... you brought a smile to my face, knowing you have and do survive.  I thank you.

With total admiration,
Phyllis

Mousie:

Welcome!

Being the curious type, I looked up 'tectal glioma'[/color] - and learned that they are usually found in children, as the following information states:

"A tectal glioma is low-grade tumor arising from a type of cell of the central nervous system known as a glial cell. These tumors originate from a specific type of glial cell known as an astrocyte. Astrocytes make up a supportive structure of the brain and spinal column. They are named for their star-like appearance.   Most children with tectal gliomas are between the ages of 3 and 16 years.

Medical research has not identified a genetic cause of this tumor. Tectal gliomas appear to develop spontaneously, meaning there is no identifiable cause.

Due to the very delicate structures surrounding the tectum, surgical removal of the tumor is limited. Management of increased pressure within the brain is often accomplished by surgically inserting a device (a shunt) or by a third ventriculoscopy (the endoscopic creation of a pathway for cerebral spinal fluid to drain into the third ventricle) to drain excess fluid accumulating within the brain.

The use of chemotherapy and/or radiation therapy is generally not indicated. Children with tectal gliomas are followed for evidence of progressive disease through frequent MRI scanning (approximately every 3 months initially).

Tectal gliomas are associated with a high rate of cure.  Many children will demonstrate an increase in tumor size by MRI, however most will remain asymptomatic and not require further treatment other than serial MRI scanning."[/color] 

This information is from the website of the Children's Hospital Boston[/color]   http://www.childrenshospital.org

I simply typed in 'Tectal Glioma' on their search engine.


I have to wonder why you were made to undergo, as you state, "43 brain surgeries' (presumably, as a child) for a condition that is basically benign and that is asymptomatic for those who have it.  In any case, it would seem logical and prudent at this point to consult with a neurosurgeon and have an MRI scan.  Good luck!.

[matti]

Mousie - Always know that we are here for you and will do our best to help guide and support you through. I think you are amazing and are certainly an inspiration to all of us.

If I were you, I would get copies of the MRI's and all of your medical reports. You can send them to the House Ear Clinic in Los Angeles to be evaluated at no charge and I am sure other places as well, hopefully someone here can add those names and places. Alot of AN patients on here are in the wait and watch, but they are closely monitored. You are having alot of symptoms that need to be addressed.

It makes me angry that you are being ignored by your GP. I went through a very similar situation with mine and wasted almost 2 years time with an undiagnosed, growing AN. You deserve to be heard!

Please feel free to e-mail me

Keeping you in my prayers and sending you a big hug
Cheryl

[tony]

Good morning – I saw your note, at the moment you must be thinking,
“why me ?� or maybe, “not again ?� But the AN really is quite different to the problems and conditions you had before.
Firstly – most ANs are dealt with, with a single treatment of surgery, or radiation – maybe only 2-3% require second or more treatments. I am not sure what the record is – but four or five OPS would be considered very many for this type of problem. I have not heard of any requiring even 10 or more treatments.
“Watch and wait� is a legitimate treatment option – its not unheard-of for these things to go ten years without causing any real problems.
But, I would usually expect a doctor/neurosurgeon to share this option/choice with the patient – if you are really unhappy with this approach my suggestion would be to get the second opinion elsewhere. It is my personal opinion that the worry and stress of the “watch and wait� option can often cause other quality of life issues
-it seems to depend very much on the person concerned.
Depending on the size and location of your tumour you may have a radiotherapy option and be able to avoid further surgery altogether
(I would understand your reasons here).
In all cases it is best to deal with doctors/hospitals that have extensive experience in this area – both for surgery or radiation
the 99% of treatments that have no, or few complications are always found in these types of facility. The group could recommend some options for you.
So
Best Regards
and Good Luck
Tony