Decision for surgery

[msmaggie]

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

[Debbi]

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

[msmaggie]

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

[leapyrtwins]

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   

[cindyj]

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

[wendysig]

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

[Jim Scott]

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

[Kaybo]

"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   

[andrea in slc]

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! 

Andrea

[msmaggie]

 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!      When we got back, my sweet husband took me out for margaritas---several

Mags

[leapyrtwins]

I may have a brain tumor, but I am not crazy! 

I think we should make this our group motto 

[Debbi]

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!

[msmaggie]

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

[hruss]

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

[msmaggie]

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