Author Topic: So concerned  (Read 3772 times)

lauralynn

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So concerned
« on: May 02, 2011, 03:36:04 pm »
Hello AN family,

I haven't felt well for going on two years now since my translab and Cyberknife but the last couple of months have been horrible.  Everything that I deal with daily seems to have worsened.  My chronic fatigue is worse (not sure how that's possible!), my facial numbness/pain is worse, my tongue feels more numb than before, my left hand and forearm are way weaker than usual, my left eye (with gold weight implant) would prefer to be closed then open, my mouth is so weak it is difficult to eat and when I wake up in the morning it feels like someone was beating my head and AN side of my face all night.  I was just given my 4th Vitamin B-12 shot last week (get them once a week) and they are not helping yet.  My primary said to drink vegie drinks...I've done that and all sorts of other things and nothing seems to work.  I've been off of work for over two months now and I feel worse now than I did then and then I was feeling pretty lousy.  I called my neurosurgeon (whom put me on long term disability) and the office staff said since it's not life threatening...that I will have to wait to be seen at my next appt. which isn't til middle of May.  Seems like forever away.  Well I do go to see my primary this Thursday so maybe she can help me somehow.  I'm concerned that the intensity of my symptoms could mean regrowth of the remaining piece of the AN.  I don't know what else could be causing me to feel this horrible.  I've had all sorts of blood work which has come back fine.  As negative as this all sounds I'm trying to keep a positive attitude....have to for my kids.  Thanks for listening.

God Bless,

Laura Lynn
4 cm left AN/diagnosed 1/23/09
Translab 4/14/09
Cyberknife 7/09
Gold weight implant 8/09
Barrow Neurological Institute, Phoenix
Dr. Syms and Dr. Porter
Balance issues, 100% hearingl loss (left ear), tinnitus, facial numbness/pain,
chronic fatigue, weakness, eye issues

God Bless everyone

Jim Scott

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Re: So concerned
« Reply #1 on: May 02, 2011, 03:46:55 pm »
Laura Lynn ~

Its heartbreaking to know that you're suffering so.  I wish I had a 'magic' solution to your many issues.  Obviously, I don't.   However, as you noted, perhaps your Primary Care Physician can recommend something helpful on your upcoming visit.  As for the neurosurgeon, I'm not sure what he might advise but mid-May is just two weeks away.  I can appreciate that you're trying hard to maintain a positive outlook and I can only guess how much of a struggle that is so I admire you for trying.  Please feel free to vent whenever you feel the need.  As I always state: if not here, where?  Meanwhile, know that you're in the thoughts and prayers of many people who are rooting for you to eventually surmount these physical problems, as I know you will. 

Jim
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.

lauralynn

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Re: So concerned
« Reply #2 on: May 02, 2011, 04:04:52 pm »
Thank you so much Jim.  Your kind words mean alot.  I just pray no one has to go through what I am.  I thank God for this forum, without it  I'd be lost. 

Laura Lynn
4 cm left AN/diagnosed 1/23/09
Translab 4/14/09
Cyberknife 7/09
Gold weight implant 8/09
Barrow Neurological Institute, Phoenix
Dr. Syms and Dr. Porter
Balance issues, 100% hearingl loss (left ear), tinnitus, facial numbness/pain,
chronic fatigue, weakness, eye issues

God Bless everyone

CHD63

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Re: So concerned
« Reply #3 on: May 03, 2011, 06:06:36 pm »
Laura Lynn .....

So sorry things are looking so dismal right now.  Surely things will turn around for you soon.  Hopefully your PCP will be able to help.

Many, many thoughts and prayers.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Brewers7

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Re: So concerned
« Reply #4 on: May 04, 2011, 09:31:36 am »
Laura Lynn,
    I was thinking of you this morning.  Have you had an MRI recently?  They help to relieve my worry.  (and I am just a few months ahead of you)  Also, I have been taking Vitamin D/Calcium consistently for a while.  Vitamin D is suppose to help boost your mood.  Can't hurt.  Have a good day.  Susan
Translab surgery 12/15/2008 followed by CSF leakage repair and 3 additional surgeries for MRSA of the brain (NOT typical) SSD,  facial and vocal cord paralysis, numerous reconstructive surgeries, Transear 12/2010

kenneth_k

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Re: So concerned
« Reply #5 on: May 05, 2011, 01:04:51 am »
Hi Laura Lynn.

I'm very sorry to hear about your struggle. An increase in symptoms is very uncomfortable and frightening indeed.
I, myself, have my built in threat evaluation system in hyperdrive sometimes. Whenever I feel physical symptom indicating a setback, my mind jumps to conclusions. It is designed to do that so I can "escape a tiger" if I hear puzzling in the grass. I'm seeing a therapist to help me deal with that.

I hope you can rule out regrowth or other disturbing causes and find some tranquility soon.

Sending best wishes and positive thoughts.

Kenneth

ppearl214

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Re: So concerned
« Reply #6 on: May 05, 2011, 05:59:26 am »
Have you had an MRI recently?

LauraLynn,
Please accept my major hugglez to you during this struggle. I was going to ask the same question about your MRI to see when it was last done to help try to bring you peace of mind of no add'l growth.  Please keep us updated as to what the PCP says today..... know that healing hugglez, prayers, thoughts and wishes are coming from me to you.  I wish I had a magic wand to rid these issues..... but hoping that the words of encouragement here on the forums will help the cause.

HUGGLEZZZZ!   :-*  :-*
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

micca82

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Re: So concerned
« Reply #7 on: May 06, 2011, 09:27:35 am »
Laura,

I just saw this post. I am sorry to hear what you're going through.

I'm praying for you.

Michelle
MRI found 5.1cm AN on left on 3/18/11: age of 28
Surgery 4/5/11 with dr.Tamargo and dr. Francis. @ johns Hopkins
Whole tumor removed, facial nerves in tact, but unresponsive
Platinum eyelid weight on 4/6
Left facial paralysis, numbness, double vision

God is the Healer

Keri

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Re: So concerned
« Reply #8 on: May 09, 2011, 11:19:38 am »
I'm so sorry to hear of all of this too, laura lynn. Our prayers are with you and i hope you are able to keep us updated.

keri
1.5 left side; hearing loss; translab scheduled for 1/29/09 at Univ of MD at Baltimore
My head feels weird!!