STILL Waiting for a Date - and I'm Not Single!

[Debbi]

My much-anticipated boogerectomy has been changed yet again!  Seems that they are having challenges pulling everyone's schedule  together and the latest is that they'll get back to me by Friday (WHAT?) with a new date - could be before the 23rd or sometime in May.   

As most of you know, I've been maintaining a good attitude through this whole adventure - but right now I feel like I am about to implode!  I am one of those people who likes certainty (okay, some would say a control freak!) and this is just about the worst thing for me to deal with. 

Keep fingers crossed that I don't have to wait all the way until Friday.  And, please give me some reassurance that my head isn't goint to blow off in the meantime ...   

Thanks for letting me blow off some steam.  Don't get me wrong - I'm not mad, I just HATE not being in control.

Deb (trying to chill in NJ)

[leapyrtwins]

Deb -

very cute subject line 

your frustration is totally understandable.  I, too, love to be in control of any and all situations, and this one would drive me absolutely nuts!

You have definitely maintained an extremely good attitude; I know, I've read your other posts.

I'm happy to say that your head will not blow off if you wait.

You wouldn't want to have a date where all the VIPs - including yourself -  couldn't make it.  So although it's hard to wait, try to focus on that.

Hope you get an answer soon,

Jan

[MaryBKAriz]

Debbi, Just read this. I am sure you must be getting frustrated, especially knowing what you are going to have done but no perameters, yet. Hope you hear before Friday! Mary

[LADavid]

Debbi
Do I have to get out my white-out again??  Did they give you any reason for the changes other than something like schedules?  HEI couldn't wait to get me into the hospital.  Hope they give you something firm soon.

David

[Debbi]

Hi all-

It's all just scheduling issues.  The neurosurgeon is on vacation this week (which is okay from the standpoint that I want him well rested before he cuts my skull open and plays around with my 8th cranial nerve!)  Then, there is some sort of symposium coming up - a gathering of brain guys, I suppose.

And, I also suppose I'm not the only (or must urgent) sugery pending.  My husband was a little indignant that they wouldn't just bump everyone else to accommodate me - imagine that!

I think now that I know what I need to have done, I just want to get on with it and see what "the other side" looks like. 

As always, you've given me yet another reason to smile - thank you!
Deb

[Kaybo]

NAW...it won't explode, just a little stream of smoke coming out the ears...
K

[lori67]

Debbi -

Seems many of us here are control freaks... I believe there was a thread about that a few months back.

I know how you feel though, I had to change my surgery date because my neurotologists wife was due to have her baby the same week I was due to have my surgery.  Apparently, I could wait, but she couldn't.  Go figure.  They did schedule an induction so he could take the week off and then get back to work without worrying about having to run out - I wouldn't have wanted him to do that mid-surgery!  I made sure to ask if he really thought he'd be well rested with a newborn in the house and his wife told him he could sleep in the guest room the night before my surgery so he would be wide awake!  I told him his wife could have him for the week, but come surgery day - he was all mine!

Hang in there and hopefully everyone will be well rested from their vacations and ready to get to work soon!
Lori

[robynabc]

HI,

Just a quick note after reading your post.  My 18 year old had a 4.5+ tumor pressing on brainstem and needing to be taken out immediately.  He was having terrible balance problems, was falling all over the place and other symptoms and time was a huge issue.  When we finally decided to make the appointment they made us wait for a month for the surgery.  I was very scared but really when you are talking about brain surgeons they are really really busy. One month was being at the top of the list.

I remember that we got priority status with Everything.  When we went in for our MRI,  they got us in in front of all the other people there and our docs got the MRI in 1 hour.   We got our DX on a Friday and our ENT had an appointment for us the Monday after that weekend.  She had it booked for us even before she told us the DX of AN with a neurosurgeon and a Head and Neck surgeon.  Both heads of the department.  They gave us priority on everything. So we were considered an emergency and it took a month to schedule the surgery.  So,  be assured,  since your tumor is smallish I think you are getting very special treatment by getting in in 3 weeks.  I really understand the annoyance but really it's all good.  At least you are in no real danger. It's just the agony of waiting.  And believe me I know what that feels like.   I understand completely how you feel. 

[satman]

Hi Debbi,I love the subject line,love the attitude.That mind frame will get you through this and guess what ?
We will be here for you when you get to the other side ,keep the spark/spunkiness alive ![is that a word] must be a brain thing.

[Debbi]

Thanks everyone - you all rock!  These are the toughest couple of days I've had since diagnosis, and I appreciate all the encouragement and warm words.  It is also very reassuning to know that my head is not actually going to blow off! 

[Jim Scott]

Hi, Debbie-trying-to-chill-in-New-Jersey:

Your frustration is understandable and many of us (Jim sheepishly raises his hand) can relate to your impatience. It's hard enough to absorb the fact that you have a 'brain booger' that has to come out, finding a surgeon you can feel confident about and mentally preparing for the surgery that could alter your lifestyle.   No pressure here.   

I was very fortunate.  When diagnosed, I had a 4.5 cm AN pressing on my brainstem - with all the attendant symptoms.  The neurosurgeon I consulted and 'hired' (his term) apparently had a lot of clout in the hospital.  He was able to schedule my surgery for about 10 days later.  It was subsequently pushed back due to some issues unrelated to the AN.  Still, even with an unexpected delay, the time between my initial surgical consult and being wheeled into the operating room was about 3 weeks, tops.  My surgeon had a hand-picked team, including his surgical assistant (also a neurosurgeon), the anesthesiologist (not a local), a nerve monitoring technician that he also called in from from out-of-town (Pittsburg) and OR nurses of his choosing.  I vividly recall Dr.Goodrich (my neurosurgeon) telling me that although he worked in a teaching hospital, he didn't permit residents or interns to assist him during AN surgeries, although they could observe.  He stated (with a smile) that "AN surgery is no place for amateurs".  This was very reassuring.  I knew I had a serious surgeonr with my best interests at heart.  I was correct.  Although the neurosurgeon had to leave for an out-of-town symposium two days day after my surgery, he profusely apologized and visited me both days until he left.  His very capable assistant (an M.D.) was very attentive and discharged me within 5 days. 

I trust your surgical experience will be similar, Debbie.  We're all going to be rooting (and praying) for you as soon as you have your surgery date.  Meanwhile, try to stay calm.  If you have to wait until May, that's only 2 months and it will go quickly.

Please let us know when the 'big day' is finally scheduled and how you're doing in the meantime.

Jim

[robynabc]

HI Jim,

Our Neurosurgeon said the same thing.  Our two docs were the only ones that worked on the tumor.  Our ENT, that was in love with Dr. Jenkins, told me that House does let residents work on parts.   I wasn't comfortable with that at all.  We would not have even known to ask that question if the ENT did not alert us to it. IMHO  It is something that should be asked.  I can tell you that it helped us decide.

I am curious,  Do you have to be careful with CK treatments too?  What sort of credentials should they have?

Robyn

[sgerrard]

I am curious,  Do you have to be careful with CK treatments too?  What sort of credentials should they have?

First I should say Hi, Debbi, you soon-to-be postie. Relax, it will happen. 

Robyn, the question about CK docs and/or centers has come up before. At one local ANA meeting, I claimed that going to most CK centers would be fine, since they are trained on the procedure, usually have extensive radiation treatment experience, and the process of treatment is highly computerized and well laid out.

Then someone there asked, "So why did you go down to Stanford, instead of to a closer facility?" I had to admit that having an experienced team did mean something to me. Although operating the equipment, and even working out the treatment plan, are very routine and error free, it is during the follow up period that you want to know you have doctors you can go back to if something develops. Things like experience reading MRIs, being able to tell the difference between swelling and regrowth, dealing with swelling symptoms effectively, and so on. So a good radiation oncologist and a good neurosurgeon are good to have for radiation, too.

Steve

[Debbi]

Okay, I'm ready to climb out on the ledge now!  Still no firm date for surgery!!  They are now saying they hope to have an answer for me Monday.   

Being a gal who likes being in control, I'm jumping out of my skin at this point!  Well, at least I have a massage and facial scheduled this afternoon - maybe they can put me in a temporary state of nirvana.

Did anyone else have such challenges getting and actual date?  Or is this my Irish luck coming through...

Thanks for letting me vent!

Debbi - out on the ledge (but it's getting cold, so may come back in soon...)

[satman]

Great idea,go out and pamper yourself,try to ease your mind.
Stay off the ledge.