ANA Discussion Forum
General Category => AN Issues => Topic started by: msmaggie on October 04, 2008, 09:13:20 am
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Good Morning to all,
I have flung my MRI at anyone and everyone who would look at it, and have ended up w/a mixed bag of results. Two drs. have said I have an AN, and three have said I have a meningioma. One said radiation of some sort was feasible, but all the rest recommended surgery. I'm guessing that a final diagnosis won't happen until surgery reveals my evil little hitchhiker. I am leaning toward HEI, but will need to call them and see about dates for the procedure.
I'm feeling some peace with the decision, basically because I'm just tired of doing research and worrying about what I have. I do admit to more than a little fear because I can't really prepare myself for a particular procedure. My control tendencies-and every teacher is a little bit of a control freak- are screaming at me to get this thing wrapped up. Sometimes we just meet up with something that is bigger than us and we have to learn to trust and have faith that we will come through this and move on with our lives. I know all of you have and now it is my turn to do that. I do gain strength from reading your stories and appreciate how everyone is ready to reassure those of us still reeling from the initial diagnosis. I was doing ok until this last MRI reading came in from the Barrow clinic. Am not really sure why it has thrown me for a loop! I just took 50 kids for a three day/two night educational camp experience, so I could just be overly tired.
On 10/7 I am going in for an ABR and will meet with the dr. here in Houston afterward. Am not sure what that will reveal, but was told it would give me another data point.
Maggie
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Hi Maggie-
In my humble opinion, uncertainty is one of the worst possible things to deal with - and the fact that you don't have a crystal clear diagnosis would be enough to drive any of us "control addicts" right to the brink. I feel for you. I guess if there is a positive in here somewhere (the veritable pony under the pile of poop!), it is that you have a strong concensus for surgery. From my own experience, that makes it somewhat easier - at least I felt like I didn't have to make the difficult choice between radiation and surgery.
I wish I had more words of wisdom and comfort to offer you, Maggie - all I can say is that you have my thoughts and prayers. Keep us posted - and keep yourself strong! You will get through this - hey, you managed to take 50 kids to a three-day camp - I reckon you can do just about ANYTHING!!
Debbi, sending you all good thoughts
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Thanks, Debbi.
You are so-o-o-o right about the uncertainty! I live in Houston, and the area is still reeling from the impact of Ike. My church was badly damaged and our congregation has had to worship on Sunday afternoons at another area church. The pastors have sent out daily emails to keep people apprised and connected during this whole process, and have addressed the topic of where God is in the storms of life. No one at church knows about my circumstances, but the daily emails about coping with difficult stuations have helped me enormously. Ike has done me a favor in a roundabout way:) I need to let go and let God, as the saying goes. My efforts to make things happen have only made me frustrated and crazy!
Mags
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Maggie -
it's wonderful you made your treatment decision, and IMO surgery is the right way to go. I usually don't voice my opinion on surgery vs radiation - since it's a personal choice - but based on the uncertainty of whether you have an AN or a meningioma, I think surgery is your best bet.
I'm sure wherever you have your surgery the doctors will be qualified and experienced and that you'll be in good hands. While HEI has a wonderful reputation and is certainly the best of the best, it's just not practical or feasible for everyone to have their surgery there.
Best of luck. Don't forget to tell us when you have a "date".
Jan
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Hey Maggie,
Glad to hear you've made a treatment decision - the ordeal getting to that point is agonizing, isn't it? But now you can focus your energies on choosing a surgical team and moving on with getting the thing (whatever it is) removed!
We'll be watching for your date - take care,
Cindy
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Maggie,
I'm glad to hear you've made your treatment choice. As others have said it is the toughest choice you will have to make. Having gotten a concensus that surgery was your best option must be something of a comfort and I hope you find a medical team that give you as much confidence as mine did. Whichever tumor your "evil hitchhiker" turns out to be, I hope the docs kick it out of there with no complications. Please keep us posted and know you are in my thoughts and prayers.
Wishing you all good things,
Wendy
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Maggie:
As a fellow control freak I can empathize with your misgivings and frustrations regarding choosing the method of addressing your tumor, be it a meningioma or an acoustic neuroma. Making the decision to opt for surgery, which seems logical, under the circumstances you're in (unknown culprit) must certainly be a load off your mind. Of course, the loss of 'control' in this situation can be somewhat intimidating. It was to me. I coped by just 'letting go' and followed doctor's orders while my wife did the calling, scheduling of doctor, lab and other medical appointments. I often describe it as feeling like I was on a train that I didn't want to take, going somewhere I didn't want to go but knowing that, eventually, I would be O.K. Sort of an onlooker instead of being in control. I leaned on prayer and my lifelong Christian beliefs, putting the situation into God's hands while doing what I could but knowing that He would was in control, not me, not even the doctors. We simply played our parts, as it were, while God directed the 'show' based on His 'script' (plan).
I'm pleased to report that all went well. The surgery was successful. The hospital stay was trying for someone like me, who hates others deciding when and what he'll eat, getting shots and blood samples seemingly every hour, etc. I pushed myself to rebound (not so easy at age 63) and was able to convince my doctor to release me within 5 days of my surgery. My recovery was fairly rapid and at this point, pretty much complete with no complications worth mentioning. I thank God on a regular basis for His hand in my ordeal and I pray often for those entering this phase in their lives, that their treatment will be successful, no complications will ensue and their recovery be swift and complete, as mine was. You'll be in those prayers, Maggie and I trust that with your attitude, things should work out well and God will give you the strength to handle whatever comes. Besides, you always have us. :)
Jim
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"MsMaggie"~
I know you have definitely done your homework and I know you must feel better just having made a decision. From one teacher to another, I couldn't even fathom being able to be away from the classroom and things getting taken care of, but you would be amazed at how well everything will be taken care of in your absence. Just let everyone do everything for you!! I'm glad that the e-mails have helped you to better cope with this - we can find something good/encouraging out of everything if we just look! PM me or give me a call if you ever want to talk. I will be in Houston for a whole week at Christmas and would love to have a get together...
K ;D
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Maggie
I can totally relate to the frustration of trying to figure out what to do! Not being sure what the heck is growing in our heads does make it more difficult to make that decision for surgery or radiation. >:( I agree with the others, if you have the majority urging you towards surgery, seems like that is the way to go.
Hopefully now you can get a measure of peace and toss the uncertainty out the window. Prayers and good thoughts headed your way!
And how on earth did you survive taking 50 kids for that long? HOLY COW! :o :o :o
Andrea
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Andrea. I'd better explain right quick that while I organized the whole shebang and I was the person in charge, I had about a dozen great parent chaperones who ran kids through the showers, baited fishing hooks, and slept w/the kids in the cabins. I may have a brain tumor, but I am not crazy! :D :D When we got back, my sweet husband took me out for margaritas---several ;)
Mags
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I may have a brain tumor, but I am not crazy!
I think we should make this our group motto ;D
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I agree with Jan - that should be our motto!
Debbi, brain tumor but NOT crazy... that's my story and I'm stickin' with it!
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Hi to all,
I was such rotten company over the weekend. I threw myself a pity party and wallowed around for a bit. If I hadn't been so tired form camping with kids, it would have been over in record time, but when I'm very tired I will cry about anything, like if we are out of bread, so this was a good one! I'm better now that I have had my cyberspace pat on the back from all of you. Jim, I especially appreciated your comments and support. I made an appt. to go and talk to the pastor of my church about all of this. My daughter is mad at me because I have not shared any of this with my circle of friends at church, but I teach several kids who go to my church and I know how quickly this juicy little tidbit would travel. I don't want people watching me and waiting for me to do something strange. Believe me, as uncoordinated as I am, it wouldn't take long for me to make tongues start wagging!
Tomorrow is my ABR, then I talk to Dr. Vrabec. We didn't exactly hit it off the first time, but I know more now than I did then, so I am hoping things will go better.
You guys are so-o-o-o supportive. When I read all the sweet messages and good advice you give to people about to be treated, I am so grateful I found this forum. I hope I can do the same when I am post-op.
Mags
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Mags,
how are you? how was your ARB? did it became clear whether it is an AN or meningioma?
Just to let you know that if you want to schedule a date for your surgery in HEI, you need to call them from 4 to 6 weeks earlier.
Hope you are well!
Don't let the decision making process freak you out! I am completely aware how difficult that time is! Trust me! I made my decision last week!
Best to you and your family!
Hrsissy
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Good Morning Hrsissy,
My ABR was just as inconclusive as the rest of my reports! It showed a little less activity on the L side, the tumor side, than on the R, but not enough for anyone to definitely pronounce an AN. I asked the audiologist if what she saw could be caused by a meningioma pressing on the nerve and she said it definitely could. There seems to be no way to tell until surgery.
I did have a good visit w/Dr, Vrabec and feel much better about my resources in Houston. I think I am going to consider the Barrow Institute instead of House because I have a good friend who lives in Phoenix and my family would have more support and resources staying with her during the surgery and recovery time. Barrow called yesterday and my drs. would be Weiskopf and Spetzler, two good names in the field. Still need to pray about this before I set a date and place. I am aiming for the beginning of December. I feel much better about everything today than I did last weekend! Guess I needed to have a good cry and then get on with things :).
How are things going with you?
Mags
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Thanks so much Donnalynn!
I am praying and trying to listen. The "be still and know that I am God" part is hard for me sometimes :) :)
Mags
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Hi Ms. Maggie,
Sorry it took me this long to get into this thread. Believe it or not, the worse part of this entire experience for me, was the decision making process and then the waiting. I figured once surgery was over I would fight my way back to regain control of my life. I have done that and you will as well.
Positive visualization worked wonders for me--you might want to try that. Imagine that it's over (do this many times) and that the doctor says "everything is fine, you did great". I did some version of this every night before falling asleep. Between that and the numerous prayers and good thoughts that were coming my way, I felt extremely calm the day of surgery. Many people have remarked on having that feeling as well.
So, put your faith in God and your trust in your surgeons and all will be as it should be.
Marci
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Hi Marci,
Thanks for your input. As I mentioned earlier, the storm here in Houston has done me a huge favor because all the messages and sermons in my church have been about reshaping our lives after storms have hit. I see that God is giving me a chance to re-evaluate what is truly important and what is not. Important is knowing that this is a benign condition and I will be able to hold my grandbabies when I am blessed with them.. Important is having the support of old and new friends, new as in all of you! Important is knowing that I am in the hands of a God who has plans for me after this is done, plans to use and bless me. I have to admit that for a while, I felt like an unwilling participant in some strange version of Extreme Makover! Now I coming to be at peace with the new me that God is shaping through this process. I still have days when I squall and bawl. mind you :D.
Unimportant things? Worry. I have a saying on my desk that says something to the effect that all worry does is rob today of its joy. So I am trying to let go of that. Schedules are next. As a teacher, my lesson plans are on my desk every day. I always have a plan , and then a backup plan. I am learning that I don't get to decide everything. Some things happen when they are meant to happen.
I have mostly decided not to go to HEI, mainly because Barrow is closer, and my roommate for 5 years after college lives there. My family can stay with her during the procedure and hospital stay. My doctors would be Spetzler and Weisskopf, and they are on the ANUSA list. I haven't ruled out Houston w/Vrabec and Trask. I had a really good visit with Dr. Vrabec last week, and it would give me a huge support system because all my local friends could help me out. I am in the process of seeing which schedules with the two clinics work best for me.
I am almost there! I feel so much better now that it is down to this. I have been asking trusted friends to pray for me in making the decision about where to go for surgery, and I will ask all of you, too. I am starting to notice some little balance issues, a little lightheadedness and disorientation that wasn't there before, so I feel good about going ahead with a December date.
Thanks to all! I feel a little like a two year old who has pitched a hissy fit and now is ready to listen to reason :). Now all I need is my blankie and a nap to make me all better.
Mags
PS...I hope to be in Chicago for the symposium! Can't wait to match names with faces.
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Maggie,
Whew..it's been a whirlwind for you. I am certain that most of us threw pity parties at some point.
To me making the decision was biggest decision.
You are considering top notch facilities for surgery. I personally had mine done at House. It was one time I wanted to be the "typical" person--in other words "another" AN surgery with doctors who operated regularly each week on the dang things.
Although not for everyone, I looked at the short term inconvenience of being away from home with the best possible long term outcome. My tumor and hearing level made me a candidate for middle fossa. Although docs in my area were great, back in 2001 their experience level was greatest with retrosigmoid.
Keep us posted,
Kate
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Hi there,
BTW, my doctor trained at Barrow; supposed to be a great place. Sounds like no matter what you do, you will have the finest care. As an ex-teacher (I went over to the administrative dark side) I can remember when neither the lesson plan or the back up plan worked and then I had to improvise. :D
And yes, Chicago should be fun.
Best,
Marci
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Trust me Marci, I can "wing it" with the best of them! As a postie, maybe I can out that skill to good use :D Let me know how it is working for you. :)
Mags
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Very funny. No, I'm still as impatient as ever, although I think Cheri has me beat. I've always been good at shifting gears; that what you get when you move around a lot as a kid, one of the few perks. So, yes, I can definitely improvise.
Keep the spirit.
M
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Maybe that's why I'm good at it. My dad was in the Air force and I married a project engineer. Never thought I could put shifting gears to such good use, but my post op lifestyle may require it.
Mags