Yeah! Translab scheduled

[firewalker]

Hi everyone!

I finally made up my mind as to who is doing my translab. After much research, I decided to go with Dr Brackmann and Dr Schwartz at House Clinic in LA. My translab is scheduled for 1/30/08 and my husband and I will be staying at Seton Hall (hospital resisdency) until my stiches are removed. If all goes well, we'll be flying back home to Wisconsin on 2/10/08.  Dr Brackmann gave me the best odds for temporary facial weakness (20%) for my size tumor and the surgery is expected to last 3-4 hrs. That's a significant reduction in surgery time from what other surgeons have quoted me. He'll also give me a titanium mesh cranioplasty so I don't have a soft spot behind my ear. I guess there are some things I need to brush up on concerning the after effects of cranioplasty. I've been meaning to check the threads on the forum about this.

I wish I didn't have to travel so far so that my kids could be with me, but at the same time, I would travel the world for the best possible treatment for myself. I guess that's all that matters to me. My phone consulations have been free and Brackmann seems to be a very experienced, down to earth kind-of-guy from what I've read on other posts and what others have told me. I know he's older (70), and I'm counting on his experience (3,000 translabs) to pull me through with flying colors in whatever he encounters while inside my head. I have to admit that I do worry a little about him being shaky because of his age He's said to have another 10 years under his belt before being reevaluated so I'm trusting he'll know when to stop if that's the case. Right now his experience wins over any doubt I have.

Thank you all so much for your responses to my inquiries regarding potential surgeons! I couldn't have made my decision without those of you who have been kind enough to give your sfeedback and share your concern. I've met some wonderful people on this forum so far and am looking forward to meeting more of you. I'm always open to support and feedback!!!! THANKYOU~

For the time being, I'm putting this thing on the shelf and daydreaming about my son's wedding in Runaway Bay, Jamaica on 1/5/08. I'm so glad I can wait until after the wedding for my surgery. Who knows, maybe I'll get kidnapped while on the big island of "Ja" or I'll shipwreck somewhere off the island and forget who I am and not have to come back home to the reality of having my head cracked open~ Oh well, I REALLY am glad to find out sooner than later about this monster inside my head. It could be worse. I'll sure be glad to be rid of it!

Be well and keep warm this holiday season,
~Firewalker

[Omaschwannoma]

You've made your decision, GREAT!  yes, the travel is far, but you are right to choose whoever and wherever you must!  Have a great time at your son's wedding (I could not wait to have my surgery, so went in 6 mos. prior to our daughter's wedding).  I understand the wanting to bury your head in the sand, but the hardest part is the decision making process.  Now, rest and relax and let your doctors and nurses take on the rest.  Happy wedding---JA MON! 

[gordy]

good luck to you firewalker and ernjoy your sons wedding.

[firewalker]

Thanks Gordy and Karen for your well wishes!

Karen, how did you fare having your surgery 6 months before your daughter's wedding? Sure hope your healing was well under way by then and how was the wedding? You're not by any chance an emptynester like me are you? My daughter just got married in Aug and now my son will be in Jan.

~Firewalker

[Omaschwannoma]

I practiced diligently my vestibular exercises, learned to walk in high heels at home first, then would take them to the mall and walk there (very difficult).  I didn't realise walking in a mall, outside, grocery stores could be more difficult and still are.  By the time of the wedding I was a wreck!  The wedding was held in Germany and we took 2 weeks of sightseeing before the big event.  Lots of cobblestones (yuk), lots of narrow streets with cars while craning neck, moving head side to side, dodging cars, looking at buildings, getting up early to "see" as much as we could, lots of backseat sitting in car on autobon, weaving in and out, back and forth (burp), so after long days of this I was totally worn out with a brainwreck of a headache.  Sleeping in hotel room there was no air, but we opened the windows unfortunately, we heard traffic ALL NIGHT LONG, I even took a benadryl to help me sleep.  I woke day of wedding with puffy eyes, very tired.  Didn't put two and two together on what my problem was as I didn't know about this sight and all the info that comes from patients themselves on what to be careful of.  When the wedding arrived I felt pretty crappy.  Too many people, one ear, noise, the heat (mid-July) hottest day ever, mother of the bride stuff, whew!  Reception was held in tiny restaurant (we had the whole place) where it was upstairs for eating, downstairs in bar for dancing and dark!  I was in a tizzy by the end of night.  All in all though I know our daughter had a wonderful time and that's what mattered most.  In hindsight, I would've just arrived to REST before the event. 

Sorry if this sounds like I'm complaining, I'm not.  I just want people in a similar situation to know what it MIGHT be like for them 6 months after treatment. 

[firewalker]

WOW! What a surprise that must have been for you and a dissappointment that you couldn't enjoy your time in Germany and at your daughter's wedding more. The mother-of-bride stuff comes at you fast on the wedding day. I wasn't prepared for that at my daughter's wedding and that's pre-treatment. Just being in a different environment makes me unsteady and airheaded while leaning all over the place to catch my balance. I can't imagine what you went through during that time and the havoc it played on your body and head. Sorry it had to be that way for you and thanks for the 6mo post-op reality check-valuable feedback~ Glad that I'll have the winter to convalesce!

~Firewalker

[Desilu]

Hi Firewalker,

I know we have talked on the phone before and I am glad that you have come to a decision. You will not regret going out to House! The hardest part is making the decision. Now it is up to your doctors and God, keep the faith! If I can help you in any way, just give me a call or a personal email. Have a great time at your sons wedding! Please keep in touch.  Ann

[4cm in Pacific Northwest]

Firewalker,

I think you have made a fine choice. I have high respect for Dr. Brackmann – as I do my own #1 choice surgeon (who did his fellow years with Dr. Brackmann and they actually have written a Neurotology textbook together)

http://www.amazon.ca/Neurotology-Robert-K-Jackler/dp/0323018300/ref=sr_1_3/702-4188606-5052003?ie=UTF8&s=books&qid=1196911987&sr=1-3


Both of these great surgeons are highly professional and have the best interest of the patient at heart. I have not met Dr. Schwartz, in person, but on the phone when we spoke he did impress me - most professional he was.

We were not 100% certain my tumor was an AN – if it was something else ( a meningioma etc)  there was a possibility of hearing preservation … So I chose the Retrosigmoid over the translab in that odd chance it was not an AN …but it was an AN after all…

You will be in the hands of the most experienced with Dr. Brackmann… specifically for the translab approach. You have chosen THE place where this surgical procedure was actually developed (by Dr. House).

Seton House is very basic (but it’s affordable.) It seemed quiet and comfortable when I toured it.  There you will have the opportunity to meet other AN patients, specifically, which bigger hospitals don’t provide.)

The food at the ST. Vincent hospital – is well, well … er um …well… pack some good tasty snacks to keep in your room. Also maybe get some popsicles to store in the common area freezer/fridge – these are good for slow hydration, nausea, etc and to keep your electrolytes up. Jell-O cups too maybe something you want to have on hand.

Take lots of photos at the wedding of you and all the family – and be sure to put some up to have there- for you to view at St. Vincent Hospital and at Seton House (I took fun family photos to Stanford and it kept me smiling) …

Going to Jamaica to rest up and relax before surgery is brilliant!    Put the whole “AN thingâ€? out-of-your-mind and just enjoy yourself  … Savor the sun, surf and quality time with your family.

Keep us posted once you get to House (they have a PC there)

Cheers,

4

[firewalker]

Thanks Ann and 4! I couldn't feel more supported in my choice.

Ann-I've said "hi" to Rita at House and to Kristin in Montana for you. Kristin forwarded some things to do in LA for post-op excursions which is really helpful. Was the train ride to Universal Studios difficult post-op? How was the tour? I've heard from someone that the buses in LA were miserable post-op rides. Thanks again for a copy of your AN journal and your willingness to talk on the phone.

4-You had a giant tumor and I'm so glad you got the help you needed when you did. How is the healing of your facial weakness progressing? The only thing that concerns me about waiting until after the wedding is wondering if my tumor will cause more problems as it approaches the 3cm mark. If it weren't for the wedding right around the corner, I'd be getting it out today! I've read that after it starts compressing the brain stem (like mine), that is has the tendency to grow a little faster.

I've also heard that lunches at St Vincent hospital tend to be last night's leftovers which don't sound too appealing and that the beds aren't that comfortable (bring your own pillow kind-of-place). I've been searching for restaurants around HEI and there doesn't seem to be that many that interest me. If anyone has any suggestions, please let me know. I definately will be packing lots of snacks and some smart water. All in all, the cost is right and I'm sure our needs will be met for the most part. You know I'd rather spend my money in Jamaica!

Be well,
~Firewalker

[Desilu]

Hi Firewalker,

The food at St. Vincent's used to be great, there was a cook there at all times and he would cook eggs and omelettes on order but about a year ago when I went back for my one year check-up the cafeteria had changed hands. The food is still good but used to be much better. They also have vending machines outside the cafeteria with sandwiches, snacks and ice cream. When you get to Seton Hall, look in the community room. Against the wall there are travel brochures and also food menu's from area restaurants, many of them will deliver, especially if you have a taste for pizza or something.

I was ok on the bus and subway rides. But then I felt so good to be alive, that I tried not to let anything bother me. I just took my pain meds as ordered and pushed on. You can also take a cab if you need to. If you go to any major hotel, for example the Biltmore, they have tour buses that pick you up and take you on tours of the stars homes or anywhere else you would like to go in L.A. Lots to see and lots to do, but don't push yourself too much. Make sure you are up for it. I really enjoyed the bus tours because they were informative and I didn't have to drive or walk, all I had to do was listen!

Hope this will help, please keep us posted, Friends, Ann

[lori67]

I've never eaten at St. Vincent's, but if you're like many of us, everything will taste like metal or cardboard, or a combination of the two, so you probably won't care who cooks your food.     There's always room for Jello, though.
 
Lori

[leapyrtwins]

Firewalker -

I just remembered that you had surgery yesterday.

I'm sure you're not on the forum just yet, but I wanted to say that I'm thinking about you and keeping you in my prayers.

I hope everything went smoothly and that you are on your way to a speedy recovery. 

Welcome to the crowd, postie!

Jan

[nancyann]

Firewalker:  You are in my thoughts & prayers that your surgery went well.  You are on the road to recovery, it may be a little bumpy at first,
but you'll get thru it.
Remember to REST, REST, REST!

Keep a peaceful heart my friend,   Nancy

(ps Jan:  thank you for the reminder!)