oh boy am I new to this

[Karla83401]

Hi Everyone,

I just got the news on Friday that I have a "large" AN that is causing the ringing in my left ear, hearing loss, headaches and facial pain. My doctor is setting me up an appointment with a neurological surgeon this next week. This news has kind of knocked me off my feet...my husband suddenly passed away 19 months ago and with two teenagers and a 2 year old granddaughter yet to raise I never considered that I could have something like this to deal with. I was sure that it was just stress, because the Lord knows I deal with enough of it between 6 kids, 6 grandkids and being a full time college student.

I am sorry that I start to ramble on, what I was really wondering is what sort of questions I should be asking and what I should be looking for as I make my treatment decisions? My doctor said that he feels that the tumor is large enough that it may be interferring with the flow of my spinal fluid. I would really appreicate any advice or thoughts.

Thank you all for your time.

Karla

[Joef]

   Welcome to the club ! ... the club no one wants to be in 
how large in CM or MM is your tumor ? yep, when they get to large
it does interfer with the spinal fluid .. do you have headaches?
   calm down! this too such pass..

[becknell]

Karla — First of all, be calm, most people who get good care do fine. But it is an important decision, so take your time and educate yourself. Particularly for a large AN, you need to be looking for a dr. that has a lot of experience. Usually for large ANs (larger than 3 cm or so) doctors will recommend surgery as opposed to radiation, but it depends how large yours is and the location. Ask your doctor a lot of questions about his/her experience on these surgeries. How many has he/she done in their career, how many do they do a year, and how many do they do that are the same size or larger than yours. Also, what type of side effects he/she would expect in a tumor your size. What type of outcome can you expect? Don't be afraid to be aggressive in your questioning (write down your questions ahead of time). You may want to look under the physician section of this board to get ideas on doctors in your part of the country that you may want to consider. My husband had surgery on a large AN (3.5 cm) and now we are looking into radiation for the residual tumor. We did a lot of research, reading, tried to learn a lot before the surgery — we wanted to know what to expect. I'd be glad to offer support, resources. Feel free to e-mail me. jbecknell@heraldonline.com. Jennifer 

[Karla83401]

Hi,

Thanks for the reassurance Joe, I keep telling myself that this is something to take one day at a time and that yes indeed this too shall pass. I don't know exactly what size the tumor is... I thought that I would get a copy of the MRI report today. I am concerned about what to ask the surgeon. As I have tried to read on AN on the internet there seems to be real conflict about if surgery is even really the answer but then I think about how quickly it has grown and I get scared. In 9/03 it was seen on an MRI as a tiny speck, they thought that it was perhaps an abnormality on the cord. I was not even told about it. Now they are telling me it is large.

Yes, I am having headaches. But perhaps even more bothersome is the fact that the left side of my throat feels sore all the time and it is difficult to swallow at times. I also have lots of "sinus" pressure in my face, am exhausted all the time (which I don't have time for, ha ha) and neck discomfort. Most of these things I have simply chalked up having so much on my plate.

I will write back more later when I get the MRI and please share any questions that you think I should ask the surgeon.

Thanks, Karla

[Battyp]

Karla,
 So sorry you are having to join our club..Just remembe we are a very exclusive group and we only allow the truly great people in!  The ana will send you some excellent brochurs which has a list of question to ask your doctor.  My sis in law told me to ask them how many sugeries they have done on my specific type of tumor, in the last 30 days how many of their patients who had surgery had facial paralysis in addition to the questions listed in the ana brochure. 

I too had symptoms that were attributed to something else and had a large tumor I also had the added stress of being sole parent to a teenage kid who's dad died from brain cancer.  Please know I'm here if you need to vent, ask questions or elminate fears.  I think I was more worried about my son than myself at the point of diagnosis. 

Please keep us posted we do truly care how everyone is doing.  This is a great place of support!

Michelle

[Kathleen_Mc]

Karla: One thingl that you could ask: If I were your mother/sisiter/wife what would you recommend I do? I think that would tend to put them on a personal level as opposed to the clinical level. Also ask How long can I think about this? If you want to go with gamma knife (and are still within size range for it) you don't want to "think you way" out of the safe size to havwe this done. Kathleen

[ppearl214]

Hi Karla and welcome!

Tickled you found us here and the one thing I can't stress enough around here... you are FAR from alone. In one form, shape or another, one or more of us are in or have been in your shoes. I'd be more than happy to share any info I have gathered (I'm in final stages of deciding now) but need more info from you. If it's "large" (over 3cm), then microsurgery is the only option and then, where do you have it done is the question.  If it's less than 3cm, then many of us can chime in with thoughts, research, suggestions, hugs, bad jokes or a shoulder if need be.

Regardless, know that you are in great company here and definately, not alone. Welcome to our very exclusive family!  Dinner is served at promptly 6pm and you have to clean up your own dishes!

Phyllis