Author Topic: I am back, somewhat  (Read 11963 times)

moe

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Re: I am back, somewhat
« Reply #30 on: July 12, 2011, 08:41:50 am »
Congratulations on the decision and will to "jump back in there." :) What kind of work do you do?
Let us know how things go, and don't forget those naps!
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

LisaP

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Re: I am back, somewhat
« Reply #31 on: July 17, 2011, 12:41:05 pm »
Hi,

Tried to call you twice, hope all is ok.  Let us know how you are doing and work. 

LisaP ;D
LisaP
AN at 12mm by 7mm by 7mm,  shown no growth as of September 26, 2013, 5.5 years into this journey.  Next MRI 2015. Doctors: Mason and McKenna.  Continue to W&W

Rivergirl

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Re: I am back, somewhat
« Reply #32 on: July 17, 2011, 06:12:01 pm »
Doing well, first week back to work went good, only 4 hours a day, I could get used to that.  Lisa P I tried to call you twice and the phone doesn't ring, tried using my home and cell phone, I will try again in a few days, thank you for your worrying about me, you are sweet!
McKenna thought I was doing very good, told him I was thankful the pain and pressure, the shocking feeling in my head was gone and the horrible tinnitus is better, he said most people aren't that thankful at 6 weeks so that is good.
Daily headaches but think those will go away at some point.  The numb and painful back is improving, physical therapy is a huge help.  Taste buds seem better but maybe I am used to that. Going to swim aerobics three times a week (at my own pace) trying to be normal so I will feel normal sooner and I think that is working.
So glad this is behind me.
Diagnosed 6/2008
Right AN 2cmx8x9
Sub-Occipital at Mass General with Martusa and McKenna on 5/31/11
Right SSD, very little taste
I think I will make it!

LisaP

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Re: I am back, somewhat
« Reply #33 on: July 21, 2011, 05:07:10 pm »
Hi,
 
Great to hear from you.  So glad that you are doing well and that this is behind you.  I hope someday this is just a memory for you and the word AN is out of you vocabulary.  This August I once again make the appointment for my MRI eeeekkkk three and a half years into this trip.  Anyways I have been following your posts and will try to call you again.

Best wishes,

LisaP :D
LisaP
AN at 12mm by 7mm by 7mm,  shown no growth as of September 26, 2013, 5.5 years into this journey.  Next MRI 2015. Doctors: Mason and McKenna.  Continue to W&W

MLB57

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Re: I am back, somewhat
« Reply #34 on: July 23, 2011, 06:35:55 am »
Hi Rivergirl,

I just read all these posts or I would have jumped in sooner----I had surgery Jan of 2001 (age almost 51 then) at U Mass Med Ctr, Worc Mass, retro sigmoid for 1 CM rt AN.  I had been in good health but I gotta tell you I felt like a Mac Truck hit me and I was using a walker for 2 weeks and didn't go back to work for 3 months--I was so exhausted all the time. Finally went back and worked part=time for a month then back to regular 40 hrs per week.  I didn't have any vestibular training, either--if I known what I do today I would have definitely gone to Mass General--you are  in great hands (as I'm sure you know now)... I remember that "Crashing" sound in my head--it came like a wave-- usually happened as I was drifting off to sleep.  My taste was kinda weird, too, but it's been so long now I think it's back to normal.

Anyway, you have lots of time yet --over a year I'd say to see you full recovery (facial nerves, etc)--so just hang in there and try to be patient... You have a great support group of MD's and people with similiar experiences on this site.

Take care and you will do just fine!!


Best wishes,

Mary aka GrammyMary
1 cm rt AN (retrosigmoid Jan 2001 UMASSMed Ctr/Worc, MA)
Residual left--continued growing--finished 30 FSR w/Dr Loeffler (Mass Gen/Boston MA) on Oct 22 2007... --April 2010--tumor shrank to 8mm and is a dark spot!!  Latest Update: April May 2017 scan shows no change!--Next MRI 2020!!  Life is good!!

psmix

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Re: I am back, somewhat
« Reply #35 on: July 23, 2011, 10:41:34 pm »
I sleep with my head elevated (one of those wedge pillows under my regular pillow), and that helps my morning headaches. If you are still having morning headaches, it may be worth a try!
Right AN diagnosed Sept. 2010 - 4 cm x 3 cm x 3 cm
Debulked via translab Sept. 2010
Removed at House Feb. 2011
CSF leak with blind sac closure and lumbar drain March 2011
Unresponsive facial nerve, platinum weight
SSD

LisaP

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Re: I am back, somewhat
« Reply #36 on: July 25, 2011, 05:28:32 pm »
Hi

One thing I have to make sure is that I get a goodnight sleep or I do wake up with a headache.  I do like the idea of the pillows.

LisaP ;D
LisaP
AN at 12mm by 7mm by 7mm,  shown no growth as of September 26, 2013, 5.5 years into this journey.  Next MRI 2015. Doctors: Mason and McKenna.  Continue to W&W

tsl

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Re: I am back, somewhat
« Reply #37 on: August 01, 2011, 11:25:34 am »
Hi Rivergirl,
I've been away from the site for a while.  I think that you're absolutely remarkable in your perseverance and progress since your surgery.  Don't forget to rest and let folks help you out.
Take care,
Theresa (tsl)
AN diagnosed Dec 2006
Approx. size 9 x 6  x 4 mm
Proton Beam radiosurgery wtih Dr. Jay Loeffler (radiation oncologist) and Dr. Paul Chapman (neurosurgeon) at Mass. General on Nov.2, 2007

Rivergirl

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Re: I am back, somewhat
« Reply #38 on: August 01, 2011, 06:51:33 pm »
Thanks Theresa, I am swimming instead of sinking but I sure do have my moments.  I actually went back to my second job this past weekend and that was really nice to see everyone at the hospital where I moonlight, there is great spirit there not like a job at all.  I am doing better each day, now 8 weeks post op, never thought I would make it and now so glad I did it and it is over.  Still with swelling on the top of my head, do think it is getting better, hard to judge cause the head feels like I am rubbing a coconut that has been attached...I am really feeling like a postie  :)
Diagnosed 6/2008
Right AN 2cmx8x9
Sub-Occipital at Mass General with Martusa and McKenna on 5/31/11
Right SSD, very little taste
I think I will make it!

LisaP

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Re: I am back, somewhat
« Reply #39 on: August 07, 2011, 02:12:39 pm »
Hi Cindy,

Only 8 weeks and it sounds like you are doing so well, back to work and feeling better each day.  Glad to hear that this is behind you.  I am starting to begin the process of booking my MRI for October.  Here we go again. 

Best wishes,

Lisa
LisaP
AN at 12mm by 7mm by 7mm,  shown no growth as of September 26, 2013, 5.5 years into this journey.  Next MRI 2015. Doctors: Mason and McKenna.  Continue to W&W

Anasazi42

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Re: I am back, somewhat
« Reply #40 on: August 07, 2011, 07:44:12 pm »
I was reading this post and wanted to say how wonderful and inspiring your recovery is Rivergirl, but also to mention how sometimes one reads something that describes exactly what you've been experiencing but haven't mentioned to anybody. I was reading the responses to your post and almost cried when I read the quote below. I experience the same exact thing when I'm drifting off to sleep! It's taken some getting used to and at first it freaked me out, but I never mentioned it because it would be non-stop complaining if I mentioned every weird thing I feel and hear after an AN. Reading that someone else has experienced the same thing was just so comforting. This forum is... I can't even say what this forum means to me. Anyway, onward and upward on your recovery Rivergirl.  :)

Hi Rivergirl,

... I remember that "Crashing" sound in my head--it came like a wave-- usually happened as I was drifting off to sleep.  My taste was kinda weird, too, but it's been so long now I think it's back to normal.
Diag. Dr. Saffran ENT 3-9-11; 45 yrs at time of diag. 3.5+ cm AN rt side; 9 hr retrosigmoid craniectomy 5-12-11 FL Hosp. South, Neurosurgeon Dr. Melvin Field; Gold wt implant
Post-op: facial para. (rt), double vision (cleared up), SSD, tinnitus, balance issues, ataxia, movement disorder

Rivergirl

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Re: I am back, somewhat
« Reply #41 on: August 09, 2011, 06:58:17 pm »
Yes, Anasazi........this site is wonderful!
Diagnosed 6/2008
Right AN 2cmx8x9
Sub-Occipital at Mass General with Martusa and McKenna on 5/31/11
Right SSD, very little taste
I think I will make it!