Author Topic: Throwing in the towel....  (Read 39128 times)

cin605

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Throwing in the towel....
« on: March 17, 2011, 11:15:08 am »
Is there anyone else that is at the point where they have just had enuf with the Drs,therapist endless running from place toplace ,person to person?I have gotten to a point where maybe nothing is going to help my sore neck and head spasms....i think i am going to stop all these appointments and just leave my body to try and work it out.
i have tried muscle relaxers,therapy,stretches,doing nothing,shots,tests,antibiotics,steroids,pain meds,grrr.
Sorry for the rambleing...its just way to over whealming.
Thanks for listening...Cindy
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

CHD63

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Re: Throwing in the towel....
« Reply #1 on: March 17, 2011, 11:34:35 am »
Cindy .....

So sorry you are really struggling!  I have been in your shoes ...... not necessarily all related to my AN, but other things, as well.  It is so terribly frustrating to go from place to place, from one treatment to another ..... and still feel lousy.

It does sound to me like you need to find someone locally to whom you can unload some of this burden and hopefully bring you some help with how to deal with all of it ...... sometimes talk therapy in combination with antidepressants will relax your body enough to let itself heal, with minor assistance of other drugs and/or physical therapy.

Glad you felt comfortable enough to ramble here ...... we can totally understand and it is a very safe place to vent!

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

yardtick

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Re: Throwing in the towel....
« Reply #2 on: March 17, 2011, 11:46:20 am »
I feel the same way about the headaches and facial pain that never really leaves me.  I have been on all kinds of drugs that just cause weight gain, depression and more fatigue.  I too feel that I am at a loss.  It is so overwhelming to think I am almost 5 years post surgery and things have gotten worse instead of better.

Good luck with your battle,
Anne Marie
Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

cin605

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Re: Throwing in the towel....
« Reply #3 on: March 17, 2011, 01:01:31 pm »
Thanks ladies!its good to know i am not alone in this forever journey.
clarice i think you may be correct...I may need to find someone to unload on.
its just so hard...looking at someone you have never met and telling them your life storey.
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

ombrerose4

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Re: Throwing in the towel....
« Reply #4 on: March 17, 2011, 02:06:13 pm »
Hi Cindy,

I feel your pain :(  I have also been to multiple doctors, therapists, pain specialists and yet the headaches continue. Right now I am in a pain study at a hospital- it's for facial pain. I am (or maybe- I might be getting the placebo effect)  getting 30 minutes of transcutaneous nerve stimulation a day for 5 days. I don't really believe it's going to work, but it's non invasive so what the heck :) I totally understand your frustration and anger- sometimes just venting helps!
Retrosigmoid 9/24/09
AN 2.4+ cm left side
Mount Sinai Hospital, NYC (Dr. Bederson and Dr. Choe)
BAHA surgery 1/4/2010

Jim Scott

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Re: Throwing in the towel....
« Reply #5 on: March 17, 2011, 02:33:26 pm »
Cindy ~

I'm sorry to learn of your very understandable frustration but because I haven't walked in your shoes I won't presume to offer advice other than to agree with Clarice's sagacious suggestions.  I'm pleased that you chose to vent a bit on these forums, validating their existence in a way that is unique because, as AN patients, we can relate to your problems even if we haven't had the identical experience.  You aren't alone in this, Cindy and I hope you can find some kind of physical and mental relief, soon.  You'll be in the thoughts and prayers of many, including me.

Jim
« Last Edit: March 20, 2011, 01:40:43 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.

jaylogs

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Re: Throwing in the towel....
« Reply #6 on: March 17, 2011, 04:09:10 pm »
Cindy, thank you for posting and venting here for us!  They say that brain surgery alone can cause a lot of emotional issues, but when you compound all the aches and pains of post op to such a point where it looks like there's gonna be no end can really get to a person.  My father-in-law's father way back when he was still alive was having all kinds of issues and of course the way our medical system generally works is they'll treat the symptoms and not the cause...so he ended up having all these pills he had to take on a daily basis...finally he had enough and started getting rid of them.  In the end he was only taking just a few meds and was feeling much better.  Just food for thought there...Anyways, I hope you do find some relief, mental and otherwise...and in the meantime, PLEASE keep us updated! (And of course...vent!:))
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

Denise S

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Re: Throwing in the towel....
« Reply #7 on: March 17, 2011, 06:30:54 pm »
Cindy, you know I just posted a "bit" of my story on another topic that I know you posted on too about the neck and head pain that you may read.    Well, it mentions that I went to the Michigan Head Pain & Neurological Institute.   I am not sure how much or what meds you are on, but one thing I learned there is that there are a LOT of meds that alone can cause headaches, like rebound headaches.   I'm sure by now you have heard of those, hey  ???

Here's something for ya.......maybe you won't feel so alone anyways....   I was waiting at my Psyciatrist{of all places}  office today who was running behind (went in with the start of some neck & head pain & pressure, ugh).   I was told he was in an emergency situation and may be a bit.  I thought I'd be fine, found a corner and rested my head against the wall.   Then a lady walked by to use the restroom.   Her prefume was so strong it sent me into a sneeze attack.   Made my pain escalate SOOOO bad, I lost it.   Went to the restroom myself to try to 'gather' myself.  I couldn't.  I went out and said I had to leave that my pain had gotten so severe and they had to call my husband to come & get me to drive me home.    I felt terrible, and almost went to ER, but I knew at home I had ice packs, and a couple meds to try before that expense.

Pretty odd though......as to where I was when I had this little 'breakdown'.   Emotional for sure!    Had to share, being under the Emotional Issues Topics  ;)

As you may tell, I'm doing a bit better now......ice, meds, lay flat, rest   for hours.

Take Care!!!
Denise
W&W 2 yrs. (due to watching other brain tumor: it's stable)
Left AN:  1.2 cm (kept growing during 2 yr.)MIDDLE FOSSA  11/9/09;  Michigan Ear Institute Dr. Zappia & Pieper
SSD, mild tinnitus, delayed onset of facial paralysis lasting 3-4 weeks, no tears AN side
BAHA surgery 10/2/12 Dr Daniels G.R.,MI

Suu

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Re: Throwing in the towel....
« Reply #8 on: March 18, 2011, 05:43:20 am »
I feel for you too.  It's like a bad dream sometimes but I focus on my grandkids and their smiles and the way they open the door for me and then wait till I'm in the car properly before they slam the door shut. I smile at the thought of that.

Do you have something pleasant to focus on? A face or a thing that when your thoughts turn to them, or it, you inwardly automatically, smile?

I'm glad you're here and feel comfortable about speaking to us. My heart goes out to you.

Hugs,
Suu xxoo
4cm Left side AN Translab August 18th 2010
Facial nerve not working
Nerve conduction Jan '11 Repeated 23rd May '11
SSD left side
5 ops in 6 weeks to fix CSF leaks
Tarsorrhaphy 9 Mar '11 Extended 26 Aug '13
Sling Thur 16 June '11
12/7 nerve graft 9 Feb '12

sunfish

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Re: Throwing in the towel....
« Reply #9 on: March 18, 2011, 06:53:35 am »
Wow, Suu!! That's the same thing I do.  I think of my tiny granddaughter's smile, and I know the world isn't that bad.

I pick and choose which doctors I'll go see these days.  I only make appointments for people I think can maybe really help me, and who haven't proven to frustrate me worse in the long run.  There's a couple places I'm not going back to.  I make every effort to schedule my doctor's appointments all in one day, where possible, so it takes less time out of my "real life."

I've given serious consideration to seeing a counselor to discuss this.  No one in my world wants to listen to me talk about this condition and how weird/bad I feel, or what my latest symptom is.   Not my husband, not my family, not my friends. No one but you ANA people really understand what I'm going through.

So, it's great we have a place to express all this stuff!  On a more positive note, I had a decent day yesterday, and I think I might be going to have another good day today!
Rt. side 14mm x 11mm near brain stem
Severe higher frequency hearing loss
I use a hearing aid (Dot 20 by Resound)
Balance issues improving!!!!
Cyberknife March17, 2010
Roper Hospital Cancer Center, Charleston, SC

Brewers7

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Re: Throwing in the towel....
« Reply #10 on: March 19, 2011, 12:36:07 pm »
Cindy,
     I certainly understand your feelings.  I am just a few months behind you  Recently my husband has had some serious health problems, so I have been playing nurse - an interesting role reversal for us.  I must say that it has been good for me to focus on something else, though I would not wish his problems on anyone.  Just an idea. Hang with me girl.  Said a prayer for you today.  Susan
« Last Edit: March 21, 2011, 12:13:30 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

cin605

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Re: Throwing in the towel....
« Reply #11 on: March 20, 2011, 10:50:37 am »
HUgs!Thanks for the toughts and prayer....I froced myself to go to dinner w/ my sister last night....i really hadn't gone anywhere except grocery shopping and Mc Donalds in about a couple weeks.
I feel a little better today.....I always feel better the day after drinking a couple Twisted Teas....If i could only drink at home i might have the cure....but i get way to antsy I am maily a social drinker.I have like 5 lemon waters to 3 teas.
Have not slept the last 2 nights awake at 4am..so annoying.I hope i sleep well tonight..i am blaming it on the full moon.
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

pfmarquez

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Re: Throwing in the towel....
« Reply #12 on: March 21, 2011, 03:32:54 pm »
I apologize in advance if these suggestions seem rudimentary.  I don't have a lot of headaches or neck pain, but when they come one, they seem to when I am dehydrated, so maybe drink lots of fluid.  One thing that had always helped my neck is this thing that I will have trouble describing....but is a sock filled with uncooked rice and a couple of clove buds.  You pop this in the microwave to heat up and loosen (steam) your tense neck muscles.  Mine is normally on my AN side.

I pray things get better for you.

Pablo   

BostonBill

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Re: Throwing in the towel....
« Reply #13 on: March 21, 2011, 06:19:50 pm »
Cindy, sorry to hear you have been dealing with some much for so long.

Perhaps it was not the Twisted Teas (not opposed by any stretch) maybe it was just getting the change in routine and socializing. You seem to be a positive person from the majority of your posts. Keep the faith!

Bill

On a side note was there a complication during your surgery? Something unusual? The reason I ask is your tumor was about the same size as mine and I am going in for surgery in June.

Thanks!
Diagnosed Dec 21, 2010, 1.75 x 1.75cm plan is for retrosigmoid removal scheduled for June 15th at MGH by Dr Barker & Dr Lee. Putting off so I may enjoy my sons senior year varsity hockey, lacrosse seasons and graduation. That and our annual trip to Cancun in May.

Suu

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Re: Throwing in the towel....
« Reply #14 on: March 21, 2011, 08:35:39 pm »
.  One thing that had always helped my neck is this thing that I will have trouble describing....but is a sock filled with uncooked rice and a couple of clove buds.  You pop this in the microwave to heat up and loosen (steam) your tense neck muscles.  Mine is normally on my AN side.

I pray things get better for you.

Pablo   
I think you're describing a heat bag or heat pack, Pablo. I have one filled with wheat but the one you've mentioned sounds like it would have a lovely smell.

Cindy - here's a link to show you the range - http://www.heatbagsplus.com.au/index.php?option=com_content&view=article&id=5&Itemid=2

Warmest wishes,

Suu xxoo


4cm Left side AN Translab August 18th 2010
Facial nerve not working
Nerve conduction Jan '11 Repeated 23rd May '11
SSD left side
5 ops in 6 weeks to fix CSF leaks
Tarsorrhaphy 9 Mar '11 Extended 26 Aug '13
Sling Thur 16 June '11
12/7 nerve graft 9 Feb '12

 


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