Overwhelmed

[Captain Deb]

Laura--this thing is entirely in your hands, m'dear.  No one can tell you what you "need to do" as  this decision is up to you.  That is why this forum is so imprtant as it empowers us,the patient, to make an informed decision as to what is the best "fit."  Generally speaking--if you consult a surgeon, you will get "have surgery" as your answer and the same is true of a radiosurgeon, you'll get a "have CK or GK or FSR" Pretty confusing isn't it?
Make a notebook, write stuff down and do your research and if possible get seen by several specialists in the different treatment options.
You are very fortunate to have found the little beast while it's still tiny.
Capt Deb

[pattibobatti]

HI,

Anxious to hear your news!   Let us know when it's a good time for you.

Pattibobatti

[msuscottie]

Welcome Laura! Sorry you had to join us here, but thank goodness this forum is here. It certainly helped me get through 2 surgeries. I am 30 and have a 4 month old, so I can relate a bit to your situation. Please let me know if I can do anything to help you along the way!

[Laura]

I was in Richmond yesterday and met with Dr. Sismanis, the Head of Otolaryngology at MCV (Medical College of VA) as well as his Neurosurgeon counterpart, Dr. Bullock. Both took their time and answered ALL my questions. I didn’t feel like a bother and I didn’t feel like they were trying to rush out of the room; they were both very helpful and informative. I received wonderful news as the tumor is small (1cm) and is not endangering the brainstem. Both Dr. Sismanis and Dr. Bullock strongly encouraged the “watch and wait� approach and much to my surprise, I have decided to follow their advice. This will mean that another MRI is required in 6 months with another 6 months after that to track the growth of the AN. Dr. Sismanis has estimated that I have had this tumor for at least 5 to 6 years so there is really no need to rush into any decisions. Time is a wonderful, valuable gift! Chances are that eventually the surgery will need to be performed as to avoid other complications that you all know so well; but we believe this to be years down the road. I will need to plan a course of action if/when the tumor reaches a size of 2cm or I notice increased hearing loss or other symptoms. As for now, I have only 30% hearing loss in the right ear and have a little tinnitus. All in all this has been a reality check but I can most definitely say this is a blessing and that it’s something I can live with. Thanks to you all for your thoughts, prayers, and support. I will continue posting and reading, as this site has proved invaluable to me during this time.

Laura

[Captain Deb]

Laura,
I was given the watch and wait option for my similarly sized tumor, but I decided to go ahead with treatment for a variety of reasons. 1. I didn't want to lose any more hearing--down to about 50 % 2. I was having headaches.  3. I had a lot of ear fullness feeling that was diving me nuts.  4.
psychologically--the idea of the thing just being there was more than I could handle. 5. It was winter! In 6 months, it would be summer, and spending the summer laid up, if that's what was going to happen, was not an appealing thought. If none of those are issues for you, then w/w seems to be the best fit.
Good Luck on you AN journey and keep us posted
Capt Deb

[pattibobatti]

Hi Laura,

Yes, that is a blessing !!!The fact that you can live with it is also a blessing...  We are all so different- I wanted that thing out the minute I found out.  Now you can relax a while and start feeling better.  GOOD FOR YOU!!!!!!!!!

Pattibobatti

[Laura]

Thanks everyone! I did think that I would want it out immediately as well but with the doctors report and my agenda for having another child before my 10 month old gets too much older, I think this is the best way to go. Although neither doctor had encountered someone asking them about pregnancy/AN's, both doctors seemed to think it would be better to move forward with another pregnancy now instead of after surgery. Yee-ha, let the baby making commence! LOL

[krbonner]

I was diagnosed when my second child was 4 months old, and we weren't/aren't sure about having more, so I also quizzed and double-quizzed my docs about pregnancy/ANs!  I also quizzed them heavily about possible links between all the extra estrogen during pregnancy and the rate of AN growth (since I woke up one morning halfway through my pregnancy with 80% sudden hearing loss).  Unfortunately, there's little conclusive evidence one way or the other about the effect of estrogen and other hormones on ANs.  I also wonder since I have a "fast-growing" AN (based on 3 consecutive MRIs) and I've been either pregnant or lactating since 2001, except for a 6 month break before my second pregnancy.  Makes one go Hmmmmm.....

In any case, last fall my neuro-ENT told me that if another pregnancy caused rapid growth, they'd just do surgery shortly after I had the baby.  This made me want to pre-emptively remove it for many reasons:
1) Immediately post-partum is not an optimal time for any kind of surgery.  Can you imagine?
2) I tend to get post-partum depression for several months - again, not a good time for major surgery!
3) I wasn't willing to risk my ability to nurse a baby b/c of meds/hospital stay/recovery from surgery.  But that's my own "thing".

BUT...  my AN is already starting to press on the brain stem, so further growth would start to get into big problems.  (In May, after the 3rd MRI, I was told to "please avoid another pregnancy" until the sucker came out.)  It sounds like you're in a very different situation with your AN, which is a good thing.  I just wanted to share that I'm at a similar life stage, and what I was thinking about, and how I made my decision.  Maybe it'll give you ideas of some more questions to ask your docs if you want.

Katie

[Crazycat]

Katie,

            Sept. is coming up fast. I'll be calling you soon! Jody - my girlfriend - and I will be visiting you at MGH!!! Just think, by the time we have the brunch, it will all be behind you!

I'm off to see Dr. McKenna tomorrow morning......

                    Paul

[Jim Scott]

lParr:

Good news Laura - and, if you can easily live with your symptoms, then you have certainly made the right choice. 

My neurosurgeon told me that my 4.5cm tumor had probably been 'in there' for 10 or 15 years before giving me symptoms that I could not ignore.  One caution about waiting, even with a semi-annual MRI: AN's have been known to have growth spurts so down the road (most likely at an inopportune time) you may have to make a relatively quick decision about surgery.  So, at each scheduled MRI session, be mentally prepared for that possibility.   Otherwise, enjoy your life and be thankful, as I know you are, for 'small favors' - and small AN's.   

[Laura]

Jim, thanks I will take your advice and heed your warning. I would like to get my little one at least walking before I move forward with any thoughts on surgery. I'm 33 and would LOVE one more child so I hope the AN will take a backseat and let me have my way  . 4.5cm is quite large!!!! Isn't is hard to believe that something like that can be lurking for 10-15 years and you never even know it.


Katie, you have just given me a lot of food for thought - thank you! I did a quick google search of AN's during pregnancy and you are correct in the fact that there isn't much out there. But the few articles that were seems to think that the tumor grew at a faster pace while pregnant. I will approach this with my OBGYN if/when the Lord so blesses me. I completely understand where you are coming from and agree that I want to be completely healthly and able to care for my children in all ways a mother should. I wish you well in your surgery; I will say an extra special prayer for you that day - from one mother to another!

Laura

[Captain Deb]

Laura,
type in "pregnancy" into the search bar just below your pic on the title page and you will find a few previoes references to others whove had pregnancy issues and how they dealt with it. I seem to remember a thread or two about it.
Capt Deb