Author Topic: One week 'til I'm rid of Lefty, that jerk.  (Read 34851 times)

Pattiken

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Re: One week 'til I'm rid of Lefty, that jerk.
« Reply #45 on: November 26, 2012, 06:24:20 pm »
Hey Jamie - I am so sorry for all of this extra mess your have to deal with .  I sent you a PM as well.
Much love,
Patti

DHJ

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Re: One week 'til I'm rid of Lefty, that jerk.
« Reply #46 on: November 26, 2012, 06:42:06 pm »
Hi Jamie    I hope and pray that things went well for you today. One year ago I returned to Mass General Hospital 6 Days after my AN surgery due to a meningitis infection. After a second surgery to clean out the infection and remove my titanium mesh I was placed on IV antibiotics for 2 months. Not what I was expecting.Today I feel good.The infection and tumor are long gone.I know how hard it is to suffer these complications but you will overcome this. Be strong and hang in there.  Peace Dave
3yr wait and watch on left sided 2.9cm AN is over surgery 11/4/2011 Mckenna/Barker at MGH one year MRI 11/12/2012 all clear

It is what it is

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Re: One week 'til I'm rid of Lefty, that jerk.
« Reply #47 on: November 26, 2012, 07:23:14 pm »
Dave, it is encouraging to hear about your journey and how it has turned out.  :)
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

millie

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Re: One week 'til I'm rid of Lefty, that jerk.
« Reply #48 on: November 27, 2012, 08:19:47 am »
Jaime...hugs and prayers for you today...Millie

lrobie

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Re: One week 'til I'm rid of Lefty, that jerk.
« Reply #49 on: November 27, 2012, 11:27:26 am »
Jamie,

I'm sorry to hear about your complication.  I know it's hard, but try to keep a positive attitude.  Thinking of you...

Lisa
6/2009 7mm x 4mm  W&W
8/2011 9.5mm x 5mm
2/2012 UPMC Follow-up , slight growth
Surgery on 7/18/12 w/Drs. Friedman & Schwartz (mid-fossa)
www.caringbridge.org/visit/lisarobie

Pajamas

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Re: One week 'til I'm rid of Lefty, that jerk.
« Reply #50 on: November 27, 2012, 01:06:56 pm »
Hey everyone,

Thanks so much for all of your support! Turns out I will need that second surgery and I'm waiting to go back down to the OR now. You know how it is, I was supposed to go down at 10:15 but I'm still waiting. They will reopen the incision site and go in to clean everything out. They said they will remove the bore holes and clean those out, and may even need to remove bone. Hopefully the infection doesn't run that deep.

They've inserted a PICC line today, this will feed me antibiotics for up to 6 weeks daily, after I am discharged from the hospital.

Again, all...thank you so much for being interested and offering support. I'll keep you posted!

Jamie

Irvine, CA ~ Female ~ 32
10mm x 5mm x 6mm AN Left Side
Diagnosed: 9/19/12
Removed: 11/7/12
* Retrosigmoid Endoscopic w/Dr. John Frazee @ UCLA

kmr1969

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Re: One week 'til I'm rid of Lefty, that jerk.
« Reply #51 on: November 27, 2012, 01:34:10 pm »
Jamie,

Good luck.  I will be praying that everything goes well for you.  You will get through this and much better times are ahead for you.

Stay strong!

Ken
2.7 cm AN diagnosed June 2012
Translab completed November 2012 at House Clinic
SSD; numbness on face and in mouth, plus poor taste buds, but happy with how I am doing so far

Pattiken

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Re: One week 'til I'm rid of Lefty, that jerk.
« Reply #52 on: November 27, 2012, 03:50:34 pm »
Jamie -
Continued prayers and support coming your way.


Take good care,

Patti

DHJ

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Re: One week 'til I'm rid of Lefty, that jerk.
« Reply #53 on: November 27, 2012, 04:25:58 pm »
    Sorry to hear that you have to go through a second surgery. This also happened to me and while it was a set back my infection (meningitis) has not hampered my overall recovery. On my second surgery the surgeons removed some bone and the titanium mesh covering my skull.This was done to help the antibiotics reach and kill all the bacteria.My PICC line was in place for 8 weeks and I got quite used to it.The visiting nurses were awesome. These complications can happen and it stinks  when they do but you will beat this.     Peace Dave
3yr wait and watch on left sided 2.9cm AN is over surgery 11/4/2011 Mckenna/Barker at MGH one year MRI 11/12/2012 all clear

skipg

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Re: One week 'til I'm rid of Lefty, that jerk.
« Reply #54 on: November 27, 2012, 08:07:55 pm »
Jamie,
I am truly sorry to read about the difficulties you are having. Saying prayers for you. Keep your spirits up, the end is in sight.
Skip
Self diagnosed 11/17/2010 (love the internet)
MRI 12/2010 Official diagnosis 1/3/2011 RT AN 7x6x4mm's
MRI 6/17/2011 no change still 7X6X4
MRI 7/20/2012 growth spurt to 14mm
Aug 8th consult and decided on Proton Therapy
Proton Therapy @ Hampton Proton Institute,       done on 11/20/12

Glenda

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Re: One week 'til I'm rid of Lefty, that jerk.
« Reply #55 on: November 27, 2012, 08:19:10 pm »
Jamie,

I am so sorry to hear of your complications!  Praying for you that you will be better soon!! My surgery is tomorrow and I too am a bit scared.  I think that's human nature.  I have a lot of family and friends praying for me so I have to give this to the Lord and know He will look after me.  I've prayed the same for you the He will look after you and hopefully you will be all better soon!

Hang in there!
Glenda
Diagnosed 5 mm AN  Jan 2008
Deep in IAC
June 2010 7 mm
July 2011 8.5 mm
July 2012 1.1 cm
Nov 28, 2012 Mid Fossa Surgery Wake Forest Baptist Hospital-Winston-Salem NC, Dr John Wilson and Dr Eric Oliver


SSD tinnitus dizziness

It is what it is

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Re: One week 'til I'm rid of Lefty, that jerk.
« Reply #56 on: November 28, 2012, 12:03:27 am »
Jamie, I join the others in sending prayers and healing thoughts your way.  You are not alone.  All of us are here for you with caring.

karen

(Glenda, you will also be in my thoughts and prayers. )
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

Pajamas

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Re: One week 'til I'm rid of Lefty, that jerk.
« Reply #57 on: December 04, 2012, 07:23:12 pm »
Thanks everyone for your thoughts and prayers. I'm finally home! Well I've been home for a couple of days now.

I have a PICC line and was put on 6 weeks of oxacillin, 24/7. Turns out my body isn't a big fan of oxacillin. I ended up with rashes and being itchy all over my body. One night I didn't sleep at all, just scratched my skin raw! They switched out my antibiotics now to Clindamycin. I'm still connected to the pump 24/7 for the next six weeks but it doses me every 8 hours while giving me a tiny amount the rest of the time in between in order to keep the vein open.

I have a fanny pack that I have to wear around with me all of the time which contains the IV bag and pump/motor. It's annoying but I keep reminding myself, "what is six weeks compared to a lifetime!?"

I'm glad to be home after another week in the hospital being poked and prodded. All of my veins collapsed and they ran out of places to take blood from until they went into my fingers.

I've been on steroids now for quite a while and I've got that steroid face as well as an extremely puffy body and distended belly. I'm not used to feeling so gross and obviously not used to looking so different. I can't wait to get back to my normal self. Has anyone else here experienced this and have any words of wisdom to offer?

All in all, again, I'm glad to be home even though I'm still not home, home. My mother is sort of taking care of me at her house while I heal and I'll be back at my own home in just another week or so. Another thing I can't wait for! Staying with my mother for any longer than I have to will make me insane! Hahahaha.

Thanks again everyone for your support during this nightmare. I hope that in a year I'll be able to look back on this and wonder if it was all just a bad dream!

Jamie
Irvine, CA ~ Female ~ 32
10mm x 5mm x 6mm AN Left Side
Diagnosed: 9/19/12
Removed: 11/7/12
* Retrosigmoid Endoscopic w/Dr. John Frazee @ UCLA

LakeErie

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Re: One week 'til I'm rid of Lefty, that jerk.
« Reply #58 on: December 04, 2012, 07:58:08 pm »
Wow, and sorry to read of the difficulties you are facing. I never experienced what you are going through now, but am familiar with bad infections and peripherally inserted central catheters as my brother had endocarditis, a heart valve infection, last summer - right before my AN surgery. His infection required open heart surgery to scrape out the visible infection, apply disinfectant, and repair the perforations in his mitral valve. Following that he had a PICC line for 5 weeks to administer antibiotics to be sure there was no more infection. He, too, was allergic to one of the antibiotics and was shifted to vancomycine. That drug caused wild swings in his sugar levels and he was on insulin daily. Today he is fine.
It is easy for me to say, but you will get past this. Try taking  this in managable amounts, like a day at a time. Try not to think in terms of weeks, or how long until the end comes. Time will pass faster that way. I wish you the best for the next 6 weeks and keep the forum posted if you can.
« Last Edit: December 04, 2012, 08:01:07 pm by LakeErie »
4.7 cm x 3.6 cm x 3.2 cm vestibular schwannoma
Simplified retrosigmoid @ Cleveland Clinic 10/06/2011
Rt SSD, numbness, vocal cord and swallowing problems
Vocal cord and swallowing normalized at 16 months. Numbness persists.
Regrowth 09/19/2016
GK 10/12/2016 Cleveland Clinic
facial weakness Jan 2017

It is what it is

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Re: One week 'til I'm rid of Lefty, that jerk.
« Reply #59 on: December 04, 2012, 08:04:46 pm »
I'm so sorry to hear about all that has happened to you. You are a trooper!  What a great attitude considering all you are experiencing.  Keep us posted.

Karen
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.