Author Topic: Pooter's surgery updates  (Read 82872 times)

lori67

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Re: Pooter's surgery updates
« Reply #240 on: June 19, 2008, 12:14:10 pm »
Maybe he just doesn't want to get picked on?   :D

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

leapyrtwins

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Re: Pooter's surgery updates
« Reply #241 on: June 19, 2008, 05:11:35 pm »
Maybe, but I don't recall us ever picking on joef  ::)

Do you think he feels targeted just for that very reason?  ;)

Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Kaybo

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Re: Pooter's surgery updates
« Reply #242 on: June 19, 2008, 07:19:52 pm »
Hey Joef~
I saw a picture on the e-mail today of Addi KAYAKING yesterday at camp - I thought of you...   ;)

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

lori67

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Re: Pooter's surgery updates
« Reply #243 on: June 20, 2008, 10:15:26 am »
Maybe next summer for camp, you can send Addi to kayak with Joef!  Or maybe he might like to go to Addi's camp instead!

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

Jim Scott

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« Reply #244 on: June 20, 2008, 10:45:34 am »
Hey guys, I know most folks only tease people they like and feel comfortable with, so to speak.  No problem.

I have time to be a moderator because I'm retired...but not as much time as I thought I would have because I'm also busy with other activities, including church-related responsibilities and helping my wife around the house (which I've always done).

I'm not a 'professional' writer but I'll accept any cash offers for future posts.  These forums are about the only place I write, other than personal letters and a few e-mails.  If I use words that send anyone to their dictionary, I apologize.  I'm not trying to expand anyone's vocabulary or be pretentious.  I just enjoy using the English language to express myself and write in a way that I hope is worth reading. Like most people, I tend to write the same way that I talk.  It's just me.  :)

All kidding about being in the Witness Protection Program aside for just a moment: many, many people know me as Jim Scott.  It's like the 19th century author Mark Twain.  Although famous as 'Mark Twain', his legal name (which he didn't change or hide) was Samuel Clemens.  I look at Jim Scott as my professional name and use it interchangeably with my legal name, as it's easier to remember.  As I said, a majority of my friends only know me as Jim Scott.  Even when I inform them of my legal name, they usually prefer to call me Jim Scott.  This has never been a problem. 

For now, I remain...

Jim  
« Last Edit: June 20, 2008, 02:50:16 pm by Jim Scott »
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Pooter

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Re: Pooter's surgery updates
« Reply #245 on: June 20, 2008, 04:37:29 pm »
WOW!  A post by Jim and I didn't have to scratch my head once!  ;)

On the poitive side, I continually to get facial movement back SLOWLY and the swelling and associated headaches have gone WAY down (so long as I leave on the wrap also and stay on the meds).  I called the doc's office re: the leakage, etc and he wasnt concerned.  It seems that the incision is now able to heal, so it's "letting go" now.  That's good, right?  On the negative side, (no offence moderators) my butt and lower back are sore.  Its probably from sitting down most of the day, every day for the last 6 weeks.  I also seems to be weaker than I used to be (even after the surgery).  Dunno.  Perhaps its just due to lack of movement on my part.  I'm also now having email / website issues.  I haven't gotten any email since yesterday and test email's bounce back with an error.  Grrrrr!!!  I had an email to my doc that he tried to respond to and I never got.  Double-grr..  I have email (one of my other accounts) to the hosting company, so hopefully it will get resolved soon.

Overall, I'm doing well with the exception of getting a brief headache when I stand and the soreness of my back-side (that better, moderators?).. Allergies are acting up, but got clearance from my doc when I phoned to take Allegra D along with the other med I'm on.  Yea!  Relief of all this is around the corner, I know it!  I'm done with it all about now.

Brian
Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

"I must be having fun all wrong!"  - Roger Creager

wendysig

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Re: Pooter's surgery updates
« Reply #246 on: June 21, 2008, 12:38:16 am »
Briian,
I'm glad to hear your feeling better. Have you told you doc about your leak yet?  The fact that there is blood in it concerns me on your behalf.  It might be nothiing or it might be something.   I'd check with the doc if I were you.  Good luck.

Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

Pooter

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Re: Pooter's surgery updates
« Reply #247 on: June 21, 2008, 07:47:49 am »
I called the doc yesterday, Wendy.  He's not concerned about the blood / leakage from my incision.  He still thinks I have CSF built up around the incision preventing it to heal all the way.  Now that the swelling / CSF build up is down, the incision can now fully heal on that part.  I can only guess based on what he said and what I feel around the incision.  The swelling is WAY down.  Thanks for the concern.  :)

Brian
Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

"I must be having fun all wrong!"  - Roger Creager

4cm in Pacific Northwest

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Re: Pooter's surgery updates
« Reply #248 on: June 21, 2008, 09:54:24 am »
Pooter,

Quoting you
"I also seems to be weaker than I used to be (even after the surgery).  Dunno.  Perhaps its just due to lack of movement on my part. "

Could this be from your calorie intake?

I had low energy and a neighbour, who is a dietary technician, brought over boost, ensure and carnation instant breakfast powder (to add to milk) after declaring,
 Ã¢â‚¬Å“Heavens you look deathly  pale and are becoming a rack of bones!â€?
Due to the diuretic I was on, Diamox, I had a reduced appetite and was losing weight like crazy. I was not aware that I was low on “good� calories.

Here are some links (I am not promoting Amazon here-  I just like that you can read the labels, on their website for examples, without having to drive to a store... You can window shop in your jammies  ;) ... like who wants to go shopping after a craniotomy?  ??? !)

Boost

http://www.amazon.com/Boost-Nutritional-Energy-Chocolate-Bottle/dp/B000KK4FGA/ref=sr_1_3?ie=UTF8&s=hpc&qid=1214060427&sr=1-3

Ensure
http://www.amazon.com/Ensure-Complete-Balanced-Nutrition-Chocolate/dp/B000AS1LDM/ref=sr_1_15?ie=UTF8&s=hpc&qid=1214060427&sr=1-15

Carnation Breakfast powder
http://www.amazon.com/Carnation-Instant-Breakfast-Nutritional-17-7-Ounce/dp/B000FIIX88/ref=sr_1_4?ie=UTF8&s=hpc&qid=1214060571&sr=1-4

I personally go with the Carnation Breakfast as it tastes just as good, it is a fraction of the cost, and I can control the milk fat content. You choose what sort of milk you mix it with: soy, skim, hormone free etc. I now start my morning off with a hot cup of this instead of coffee. This all started in my post op days when I was tired and had CSF leaks… and coffee still tasted disgusting due to facial nerve swelling. I still have coffee but just one cup now, later in the morning, as this first hot bevy is a more nutritious drink. Because you are taking a diuretic and now an antihistamine (also a diuretic) you will have to be careful of other diuretics you add to your diet such a tea and coffee as to protect your kidneys. Thus my neighbour suggested the energy drinks I mentioned above.

Please remember I am not a medical professional only an experienced patient who learned from my medical professionals mistakes. (My Stanford team was great it was the follow up care at home, in Oregon, which was not.) As long as you are still leaking CSF you should also stay clear of people with colds and infections. Quarantine yourself until this stops-  as the leak allows direct access to the brain for bacteria still.. Take your temperature regularly until you are on the clearing. “IFâ€? you spike a high fever you must get medical help right away as this could develop in meningitis. I never spiked a high fever- thank God. I am not trying to scare you but I just want you to be well informed.


Back and Butt pain
Place heat pads on your “posteriorâ€? (that is a poke & tease  ;) :D ;D  at my cherished, well written and eloquently spoken buddy – “Scottyâ€?… AKA Jim Scott  :-*) …and back will help. Do NOT apply heat along "the spine" as this can cause more inflammation and increase swelling and leaks. If the incision is still inflamed you can apply ice- but not more than 12 minutes, at a time, to prevent frostbite. The bed resting is magnifying this for sure- be sure to walk daily (with a buddy to help you)

All what you complained about I too had. It does get better with time. Currently I am practicing double pirouettes on the dance floor. I can do a single but still have balance issues on the double. I would not have thought this possible last August when I had a walker, I was SO tired, my posterior and back ached and I had CSF liquid coming out of my nose… not to mention the morning sickness and appetite loss with the Diamox. It was a tough 9 months- and unlike pregnancy there was NOT a-buddle-of-joy at the end- however the tumor is gone now. ;D

Pooter- it does get better! Hang in there.

Keep moving forward…

Daisy Head Mazy :)


4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

4cm in Pacific Northwest

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Re: Pooter's surgery updates
« Reply #249 on: June 21, 2008, 10:18:16 am »
“Scotty� (and his readers)

Off topic here. Jim Scott I think you have a natural talent and gift for writing. I do not want to loose you, your time and efforts as our moderator however I really think you should ALSO write a book (reference, informational, novel or otherwise) as you are so eloquent with words. Your posts challenging me to go to on-line dictionaries ...and I think this is great. You are bringing up the mark that is making us all life long learners here. Not just in the neuroscience of Acoustic Neuroma but also in English Language. You are just the sort of a retiree that would make a huge difference in a high school English class - as a volunteer. (Ever thought of doing this?)

Speaking as a teacher and a curriculum writer here… I think you and your posts are awesome … Please do not lower your levels. I personally find your posts intellectually interesting and healthily challenging me to expand my vocabulary.

I think our “enterprise� team here is pretty awesome.

Jeff is our outdoor enthusiast who is often away kayak fishing.
Pearly Whites smile  ;D keeps us well fed with treats of popcorn and chocolate that are not good for our teeth …but we eat these because they are delicious and are comfort foods. Her huggles alone are also comfort food.
Steve is our wonderful high tech info enthusiast with a sunny disposition on a rainy dreary and overcast Pacific Northwest day
And you, Jim Scott, …are our amazing English professor… who has the power to beam us UP;D

Do not change- we like you as you are… Here is a textbook for all us students to bookmark and share.
http://www.thefreedictionary.com/
My vocabulary list has increased tenfold since Professor Scotty   ;) came on board.

He’s a keeper is our wise ole owl…

Cheers,

Daisy Head Mazie  :)



4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

Kaybo

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Re: Pooter's surgery updates
« Reply #250 on: June 21, 2008, 10:20:32 am »
I agree WHOLE HEARTEDLY with Daisy!!  Keep on keeping on Jim!!   ;)

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

leapyrtwins

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Re: Pooter's surgery updates
« Reply #251 on: June 21, 2008, 10:51:43 am »
Daisy -

in reference to your "off-topic" post, I couldn't agree more.  Jim is a wealth of knowledge and I always have, and always will, enjoy his very eloquent, insightful posts.  I am amazed by his vocabulary, his writing style, and his willingness to always rise to the occasion on this forum and help others.  I hope he never changes - and yes, I think he would write an incredible book.

Jim -

on the same topic, I want to say that I hope that I haven't offended you in any way.  As you said "most folks only tease people they like and feel comfortable with" which is exactly why I like to tease Lori, K, Steve, Phyl, you, and several others.  I tease my doc mercilessly at times also, but I'm confident he's come to the realization that I'm just having fun with him because that is what I "require".  I've also taken the time to seriously thank him on many occasions, so I'm sure he knows "where I'm coming from".

I take my fair share of teasing also and I wouldn't want it any other way - it's the way that I am.  I've spent way too many years of my life being way too serious - and frankly, I've come to realize that life is too short not to live it the way I want to.
 
That said, if you ever feel I am out of line with my comments or teasing, please just PM me and I'll tone it down.  Scout's honor  ;)

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Cheryl R

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Re: Pooter's surgery updates
« Reply #252 on: June 21, 2008, 10:54:11 am »
The strawberry instant breakfast is the best to me as it doesn't seem to have an after taste. The chocolate does a little.    A lot of grocery stores don't carry the strawberry so may take some looking.     This is something I keep on hand even before having surgery.                
   It is important that one has a protein intake of some kind to help incisions heal.            Many of our elderly hip surgery  pts always had to be reminded of this.  
I am wondering too if the blood tinged drainge you had wasn't a serous type drainage as that can be blood tinged too.         Then  goes to more of a yellow cast.            
                                                        Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

leapyrtwins

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Re: Pooter's surgery updates
« Reply #253 on: June 21, 2008, 11:05:53 am »
It is important that one has a protein intake of some kind to help incisions heal.   Many of our elderly hip surgery  pts always had to be reminded of this.  

Cheryl -

thanks for sharing this information.  My dad has had 3 hip replacement surgeries - one of his hips was replaced 19 years ago and was just replaced again about 6 weeks ago.  I don't believe anyone ever told him this and it sounds like they should have.  I'll have to mention this to him.

Hope you are doing well,

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

ppearl214

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Re: Pooter's surgery updates
« Reply #254 on: June 21, 2008, 11:26:08 am »

Pearly Whites smile  ;D keeps us well fed with treats of popcorn and chocolate that are not good for our teeth …but we eat these because they are delicious and are comfort foods. Her huggles alone are also comfort food.


I'm lurking from time to time and trying to stay caught up on things... and I lurked and saw this.... and honestly, you make me blush...... Thank you to my/our favorite Daisy Hazy Mazie for such kind words..... 

 *slips the Daisy a $10 bill behind back......*     Is that enough, hun? ;)
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"