Different kind of tumor?

[msmaggie]

Hi everyone,

Only in a forum like this could I report that I'm excited that my diagnosis for an AN could instead be a meningioma!  I sent my MRI to the House clinic and a Dr. Wilkinson called me today and said that A) I still had plenty of time to think about what I wanted to do and B) that he really did not think that this was a neuroma, but a meningioma, the most common type of benign brain tumor.  I would be trading one tumor for another, and the treatment and yucky side effects are basically the same, I think, but the meningioma is less likely to directly impact the 7th and 8th nerves.  I think that might be a little ray of sunshine.  He needs to consult with two other drs. and will get back to me later on this week. 

I have an appt.  Sept. 5 w/ a local dr., so now I feel like I am going in with a little bit of knowledge.  We will see if Dr. Vrabec agrees with Dr. Wilkinson.

The adventure continues... .

Maggie

[mimoore]

Maggie my intial diagnosis was a meningioma and during surgery it was tested and that is when they found out it was an acoustic. When I thought I had a meningioma I went to a great site meningioma mommas and they have been very supportive also.  I think complications depend on location, size of tumour, how sticky it is, how skilled your surgeon is, how well equipment works, there are so many factors. There are people on meningioma mommas who have experienced facial paraylsis, etc.. I am sure you will some out of this with flying colours, think positive.
{{cyber hug}}
Michelle 

http://www.meningiomamommas.org/

[msmaggie]

It's still brain surgery, isn't it?  With all the risks and complications, still disrupting your life.  I know I still have decisions to make and I appreciate the website info from you, Michelle.  Knowledge is power!  I want to read all I can, but I know that the final diagnosis will be when the surgery is done...if that is the route I need to take.  Thanks 

Maggie

[mimoore]

Maggie there is nothing wrong with arming yourself with information. It really has helped me to understand some of the doctor talk. I have a better understanding how all of the nerves and my brain work - maybe in my next life I will be a doctor - or maybe I should add it to my list of careers now. hahahaha
I have a binder with MRI images and reports, operattive summary, path reports, information from on line, etc.. I know medical documents can go missing and I want to be proactive. My family thinks I am crazy - but right now it consumes me.  Healthly or not it is me.
Michelle 
Good luck.

[wendysig]

It does sound like you're trading one tumor for another but either way you are right.  Knowledge is power, the more you have the better you feel about your situation  (or that's how I feel anyway).  Please keep us posted on what the doctors have to say --- September 5 is just around the corner.

Michele - My husband accused me of being obsessed with my AN because I did such a lot of  research and spend so much time here.  You are right, medical records can and do go missing -- I've seen many posts here on that very subject.  You are smart to get and keep copies of all reports and MRIs, don't let anyone convince you otherwise.

Maggie - sorry for the hijack - it happens a lot here!

Best wishes to both of you,
Wendy

[Pooter]

Speaking from recent, personal experience, you are in GREAT hands with Dr. Vrabec.  You are right that you are trading one for another but the risk to nerves being directly impacted is less.  I wish you all the luck in the world.  Let us know what Dr.V says!  (Tell him and Kathy (his primary nurse at the desk I said 'Hi" also!).  They're great, intelligent, attentive people.

Brian

[msmaggie]

I really appreciate the feedback, Brian.  I wish my appt. was sooner, but I needed to work around my work schedule so that's the way it fell out. Knowing that you trust him helps to diminish the fear factor somewhat.  Since I am over fifty, I had to go see a gastroenterologist  for a routine "let's schedule you for a colonoscopy" visit.  He said I could schedule it whenever I wanted, and I told him he would have to stand in line!  I had bigger fish to fry.

I'm hoping that I heard the dr. from HEI correctly when he was talking about the nerve involvement.  I looked up petrous meningiomas on the internet, but there are several kinds and it depends on where they are attached.  That part I don't know.

I ordered some CD's from the last AN symposium and listened to them.  The first one was about surgery and radiation options.  The second was a question and answer session.  Both were good, but the first was really helpful. I  feel like I can have a more meaningful discussion w/Dr. Vrabec when I do see him. That is if I don't freeze up from fear!

Thanks again,
Maggie

[msmaggie]

Hi to everyone,
I heard from Dr. Wilkinson of HEI again today.  He was supposed to show my MRI films to a neurologist to see if they could decide if my tumor is an acoustic neuroma or a petrous meningioma.  The neurologist is still out of town, so Dr. Wilkinson said he would show it as soon as the dr. came back.  He suggested that we could do a "wait and watch" to see if it grows in the next six months.  I have no problem with that since I am symptom free, except for some mild, intermittent tinnutis.  My question was whether that meant I would no longer be eligible for the middle fossa surgery, intended to preserve as much of the hearing as possible, if the tumor grew.  That was what he originally recommended, and he admitted that a larger tumor might remove that option.  Hm-m-m-m....

Then he said that on this coming Friday there would be a radiology conference to discuss cases, and he was taking my MRI and was going to make it the "interesting film of the week." Now, as far as I am concerned, I think I am getting a lot of mileage out of a free telephone consultation! 

And so it goes.  Good wishes to all who are facing treatment or recovering from treatment.  My time is out there sometime in the future.  My appt. w/Dr. Vrabec in Houston is Sept. 5.  We will see what he says.

Maggie

[mimoore]

Keep us posted Maggie!
{{{{{{warm fuzzy hug}}}}}}
Michelle 

[MAlegant]

Hey Ms. Maggie,
I didn't have an AN but a TN (see signature below) but they let me play on this forum anyway, which I appreciate more than I can say.  I had retrosigmoid surgery and they preserved most of the hearing in the affected ear.  I think it has more to do with location of tumor (mine was wrapped around the facial and acoustic nerves) then it does with the surgery, although translab seems to result mostly in loss of hearing.  And yes, brain surgery is still brain surgery, but if I were you I'd take any little ray of sunshine offered.  Best of luck as you watch and wait and ultimately choose a course of action.  In any event, you have more in common with us than not, so keep on posting.
Marci

[LizH]

Maggie, My neurosurgeon told me yesterday that I have a menningioma not an AN, which is what I have been made to believe the last 10 years. I believe her because my symptoms now (muscle weakness, difficulty walking, poor balance et.) are consistent with symptoms of meningioma. In any case the treatment is the same as for ANs except that she says I will not get better with surgery. I dont believe her though. I am getting a second opinion any way. My tumour is big, but once it is gone and no longer putting pressure on the brainstem and with some physical therapy I should do better.
What have you found out so far? Liz

[msmaggie]

Oh dear. Liz!
Why do they think you won't get any better?  From all that I have read on this forum, recovery may take a log time. but people do make gains!  Please let me know when you get a second opinion.  Dr. Wilkinson is supposed to call me back tomorrow afternoon, and I will ask him about my recovery if it is a meningioma.  Also, the website that someone sent me about menningiomas was helpful to me.  It is  http://www.meningiomamommas.org/.
  I am still trying to decide on what kind of surgery or treatment I want to do, if I still have choices.  Some days I want to be in complete denial, but most days I try to keep reading and researching to see what my options are.  Not a hobby I expected to take up, but there you are!
Maggie

[msmaggie]

Okay,
the HEI has officially declared that I have a meningioma and not an AN.  Dr. Wilkinson said I could take as much as 6 mos. to deicde what to do about it.  The treatment is the same as for an AN. I guess I am afraid the tumor will decide to mushroom if I take that much time, although it would mean that I would have time to get through most of the school year.  There never is the right time to turn your classroom over to a sub for 2 months, is there?  At least I will be able to get the school year under way and get routines established.  I wish I had known about this back in May so I could be already done with this.  Sigh.... the timing stinks!

A confused Maggie

[leapyrtwins]

Maggie -

I don't know about meningiomas, but ANs are typically very slow growing, so you might want to seriously consider Dr. Wilkinson's 6 month time-frame.  By then, the majority of the school year would be over.

Just a thought,

Jan

[mimoore]

Hi Maggie,
I left my kindergarten assignment on May 4th, one month after I was diagnosed. It was tough for me to leave but children are resilent, they will miss you of course but will be okay. Try not to take too much stuff to your class so you won't have to pack up too much. Good luck, I understand.
Michelle