Author Topic: Throwing in the towel....  (Read 38921 times)

pjb

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Re: Throwing in the towel....
« Reply #45 on: February 16, 2012, 09:15:36 am »
I have been there too where enough is enough with all these doctors so far haven't given up but haven't been doing what I should be either...Good to come here and see we are not alone and many words of encouragement does help..So please do not give up take a breather for a little while but start again there has to be the right course of treatment out there we have to be patient and we will find it...
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

cin605

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Re: Throwing in the towel....
« Reply #46 on: February 18, 2012, 10:04:34 am »
Hello to all my AN family!
i haven't been here in awhile i have been on the Facebook AN site....Not much has changed..still icky ..i am getting about 4 good days a month.still get the wonky head,pain in the neck and my tongue muscle,nerve swells when i get wonky headed.
i haven't been running to all the Drs....less stress there..stiil can not shop w/o feeling like total wreck days later.
joined the gym and try to get there to go on the eliptical trainer ....positive note:i can go on the treadmill if i hold on tight and do not look around.The winter has been nice to us here in NH.....lots less ice to deal w/ on the sidewalks.
it will be 4 years in June..my how the time just flys.
Hugs to all.
Cindy
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

Mei Mei

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Re: Throwing in the towel....
« Reply #47 on: February 25, 2012, 07:27:14 pm »
Dear Cindy,
Life is really different after surgery.   I have trouble with balance and I used to love to run but can no longer do that after the laminectomy surgery back in 1988.   The balance started after the AN surgery in 2010.   My skull is so sensitive and my neck awful.  I have to come home and rest after talking to someone because there was so much pressure on my neck from the conversations with people.  Next time I visit a person, I will bring my traction thing that I got from Amazon.  It's a terrible way to live.   Someone from ANA wrote to me and is seeing dr. Ducic on Tuesday.   This is one doctor that you can put your trust in and he is really listening to you and not patronizing you.    I don't know what else to tell you to get back to normal and i hat the idea of the new normal.

Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

cin605

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Re: Throwing in the towel....
« Reply #48 on: July 13, 2012, 07:03:41 pm »
Hello Again!4 years out last month!I went to see new neurologist in May...diagnosed w/ essential tremor...on new med propranolol....its working good on the neck spasms for the most part.pain still comes n goes...alot w/ the weather.Seem to do better in warmer climate.Still dropping things.dropped a glass it landed on two others...landed me in ER with 5 stiches to the arm.Taking things day by day..HUGS to all.
Cindy
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

Brewers7

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Re: Throwing in the towel....
« Reply #49 on: July 14, 2012, 09:34:22 am »
So sorry to hear about your struggle.  Keep us posted.  Praying down south.
« Last Edit: July 14, 2012, 06:45:27 pm by Brewers7 »
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

Jim Scott

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Re: Throwing in the towel....
« Reply #50 on: July 14, 2012, 02:19:00 pm »
Hi, Cindy ~

Thanks for dropping by with an update.  I'm sorry you're still dealing with pain but encouraged that medication (and warm weather) are having some positive effects. You're in the thoughts and prayers of many people.  Please try to stay connected here as your time and energy permit.  Thanks.  :)

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.

wwarr

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Re: Throwing in the towel....
« Reply #51 on: July 17, 2012, 07:42:39 pm »
Cindy,
You have been through a lot and continue with such a good attitude .  Headaches can be so challenging to live with.   I'm sorry you are in pain and have been struggling.   Sharing your experiences really helps others and I thank you for sharing.  You are very strong!  Dealing with the post AN problems is not an easy task but please know you can do it and you have support here.

Please know your in my thoughts and prayers.  Stay strong and know your comments are appreciated.  Best wishes!!
Wendy
4 mm x 8 mm 12/08
1.4 cm rt. AN middle fossa on 7/23/10
hearing and facial nerve preserved. Grateful for brilliant surgeons Dr. Friedman/ Dr. Schwartz @ HEI in LA, CA.

post op chronic headaches
”Faith in every footstep...let go and let God”

Mei Mei

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Re: Throwing in the towel....
« Reply #52 on: December 17, 2012, 10:05:25 pm »
I've been told that the heat lasts longer with red beans.   I've been off this site because of my neck.    I've had lidocaine and cortisone injections recently and right before Thanksgiving I had a rhizotomy that was so painful, I was screaming.    I don't know why these horrible shotes can't be done with anesthesia like at the dentist or the colonoscopy doctor.
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

lauralynn

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Re: Throwing in the towel....
« Reply #53 on: March 27, 2013, 04:36:31 pm »
Hello Cindy,

I can so relate to your frustration.  I don't have neck issues but I have facial weakness that is a major discomfort and can also be painful.  I also deal w/ fatigue and total exhaustion.  I have to force myself to do things even though i feel awful, otherwise I would never do anything.  I'm about to give up on seeking help from doctors.  My neurologist told me to take a vacation for my pain issues, my Pain Management dr assumed I was selling my meds on the streets (I told him I can't take them that much) coz I told him they don't help w/ the pain and when I take them they mess up my stomach and make me even more tired than i already am and my eye surgeon told me in a very firm voice that I would never smile again.  Sorry I'm venting now.  But it is hard to look for help when you feel awful and you feel like you get nowhere.  I just went to an AN support group meeting this week.  Was interesting to hear everyone has such different stories.  I have all ANers on my prayer list so please know that I pray for you daily.  Like Jim has told me before, stay connected to the site and express your struggles.  We all are here to help each other.  God Bless
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

Mei Mei

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Re: Throwing in the towel....
« Reply #54 on: May 16, 2013, 06:28:44 am »
Cindy, don't throw in the towel.   At least try Dr. Ducic at Georgetown and get an appointment with Maureen Moriarity.  His surgery took care of the top of my head.

I still have the problem with my sub occip. , neck and shoulders.   It's from allergy to the nickel in the mesh.    I going to Denver to see the people that were on ABC News yesterday.    Then on to Stanford for microsurgery.     I don't even know if they can do microsurgery on this but it's worth a try.

I'll call you from there and let you know....we are all here for you.
Gentle hugs,
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

Gloria Nailor

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Re: Throwing in the towel....
« Reply #55 on: July 08, 2013, 09:34:02 am »
So sorry to hear you are discouraged.  It is very frustrating at times but we can't give up, got to keep moving forward.  If you are in pain I think you should search further for help.  Have you tried acupuncture ?  Do you see a therapist, I love my therapist, even make my family see him at times !  It's hard to live with chronic pain and talking with someone who is outside your family and friends is helpful.  Hang in there, hope things improve soon !
4/2011 diagnosed with 3 cm AN on right side
6/15/2011 retrosigmoid craniotomy which resulted in SSD, severe facial paralysis
7/2011 gold weight placed right eye lid
5/2012 tarsorrpapny right eye
6/2012 woke up with a smile
1/2013 cranioplasty because a screw came out of my head!
6-7/13 regrowth, GK

nftwoed

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Re: Throwing in the towel....
« Reply #56 on: July 09, 2013, 02:19:23 pm »
Hi Cindy;

   I'm at that point often. It goes with NF-2 and it's secondary effects.
   "Throwing in the towel" ... sort of implies "rescue from drowning".
   Looks like our forum has plenty of towels and throwers. Keep your chin up, OK? Yes, I know effort is required. The goal is life the best we can deal with our circumstances and at days end, if one hasn't given in to despair, a spirit may say; "Well done, good and faithful servant, come and ... I need be careful here as know this is not a religious site.
   Peace be with you, Cindy. Hold fast to it, um, please?

Gloria Nailor

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Re: Throwing in the towel....
« Reply #57 on: July 09, 2013, 06:51:11 pm »
Hi Cindy, sorry to hear you are having a hard time lately.  I think most of us know a bit of what you're going through.  I notice you live in NH, I live next door in Vt, maybe we could get together some time and chat.  How far are you from West Lebanon? I see you went to DHMC for your surgery.  Please let me know if you'd like to meet.  be well, Gloria
4/2011 diagnosed with 3 cm AN on right side
6/15/2011 retrosigmoid craniotomy which resulted in SSD, severe facial paralysis
7/2011 gold weight placed right eye lid
5/2012 tarsorrpapny right eye
6/2012 woke up with a smile
1/2013 cranioplasty because a screw came out of my head!
6-7/13 regrowth, GK

nftwoed

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Re: Throwing in the towel....
« Reply #58 on: July 13, 2013, 07:59:54 am »
Hi'
   My feeling is allowing the body to seek "Homeostasis" may be a good thing if one doesn't have an immediate, life threatening illness.
   Left alone, in many situations, the human body makes attempt to heal itself. I think this is oftentimes circumvented by a sense for immediate relief from suffering.

 


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