ANA Discussion Forum

Post-Treatment => Cognitive/Emotional Issues => Topic started by: cin605 on March 17, 2011, 11:15:08 am

Title: Throwing in the towel....
Post by: cin605 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
Title: Re: Throwing in the towel....
Post by: CHD63 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
Title: Re: Throwing in the towel....
Post by: yardtick 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
Title: Re: Throwing in the towel....
Post by: cin605 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.
Title: Re: Throwing in the towel....
Post by: ombrerose4 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!
Title: Re: Throwing in the towel....
Post by: Jim Scott 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
Title: Re: Throwing in the towel....
Post by: jaylogs 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
Title: Re: Throwing in the towel....
Post by: Denise S 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
Title: Re: Throwing in the towel....
Post by: Suu 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
Title: Re: Throwing in the towel....
Post by: sunfish 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!
Title: Re: Throwing in the towel....
Post by: Brewers7 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
Title: Re: Throwing in the towel....
Post by: cin605 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.
Title: Re: Throwing in the towel....
Post by: pfmarquez 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   
Title: Re: Throwing in the towel....
Post by: BostonBill 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!
Title: Re: Throwing in the towel....
Post by: Suu 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 (http://www.heatbagsplus.com.au/index.php?option=com_content&view=article&id=5&Itemid=2)

Warmest wishes,

Suu xxoo


Title: Re: Throwing in the towel....
Post by: Denise S on March 21, 2011, 08:57:08 pm
Pablo,

I was given a gift called a Bed Buddy that is made of rice and can be used as hot or cold.   I use it only for heat since I have gel packs or other for cold.  I really like it and thought of making my own too.     But for anyone not interested in making anything, those are availabe at most stores like Walmart or Walgreens or similar.

You also mentioned staying hydrated.  That is SO important.  I was just at a head pain institute and that is one thing they stress too.        (I drink pretty much only water, and about 80 ounces per day, I was told that was really good)

Title: Re: Throwing in the towel....
Post by: cin605 on March 22, 2011, 08:14:50 am
I agree...I drink alot of water....gotta have it!
Title: Re: Throwing in the towel....
Post by: cin605 on March 24, 2011, 06:50:07 pm
Felling a bit better today...no i did not take up drinking dailey.. ;D
I did sign up for a trial membership at the gym up the street....I was going for a nap ...when i remebered they had a hot tub there...grabbed a towel and my suit and went.
headed straight for the tub soaked for 20min.....felt great.
cost alot to be a member though.....$49.00 per month...but i am going to go everyday for a week and if it helps i will cut back somewhere else...cable?100,000 channels nothing on.
Jim look i got a whole profile pic up! ;)
Title: Re: Throwing in the towel....
Post by: CHD63 on March 25, 2011, 07:24:21 am
Cindy .....

Love your picture!  Somehow it always seems more personal to see a picture .....

Thanks.   And, yay for the Y trial membership.  I always feel better after exercising ..... it is just the motivating myself to get down to the Y where I have a problem.   ::)

Clarice
Title: Re: Throwing in the towel....
Post by: moe on March 25, 2011, 08:30:05 am
Cindy,
I also like your pic... Maybe I'll get one posted some day ::)
Throwing in the towel now has new meaning since you are soaking in the hot tub! ;D
 I would say  continue to enjoy your trial membership, then go for it. 49.00/mo =8 starbucks coffee (?)= a pedicure/manicure.
Justification is prudent! And no guilt trip if you decide to spend that money every month. At this point in our lives, it is all about taking care of ourselves so we can help take care of others.....
Maybe there are other classes there, yoga or pilates or whatever.
BTW I don't have grandkids but can only imagine the joy they bring! (Just teenager, and 2 college tuitions. How depressing is that?!)
Maureen
Title: Re: Throwing in the towel....
Post by: cin605 on March 25, 2011, 12:26:34 pm
I have no Grandkids either.....but ...i do have a 16 year old boy,who looks and acts just like me.... ::)
I am a single Mom......I have been since my son was 2,his father was an idiot so,i had to say BY BY......
I am so damn independant....i going to be 45 and never been married....was engadged for 6 years....
Only lived w/ two men in my life on was my first love ..who got killed in an ATV accident when we were 22...
So....squeezing the purse strings but i am going to do it! ;DThey also have Yoga and Zumba and Spin....i used to spin before surgery...but now its to intense.
I may try the yoga or pilaties.
Title: Re: Throwing in the towel....
Post by: Jim Scott on March 25, 2011, 01:17:39 pm
Cindy ~

Congratulations on your new gym membership.  A good investment that I expect will be beneficial for you.  Congratulations too, on posting the new photo.  Nice job - looking good.  :)

Jim
Title: Re: Throwing in the towel....
Post by: Nickittynic on March 27, 2011, 02:08:12 am
Yep, I've felt exactly like that.

AN-wise things seem okay. I narrowed my doctors down to a neurologist and eye doctor. I decided I don't like neurosurgeons so I only go for my yearly MRI check, and not even to the surgeon who did my surgery.

I can't seem to get myself to call a doctor for any of my other problems that keep cropping up (GI issues mostly), though. I just can't deal with the doctors anymore!

Enjoy your gym membership! My "distract yourself with stuff to do" plan was working for awhile but seems to be backfiring now that all my 'stuff to do' is pilin up and stressing me out.  :P
Title: Re: Throwing in the towel....
Post by: cin605 on April 01, 2011, 06:00:27 pm
If every week was like this one i would be estatic.
Went for several walks.....ate lots of junk food too though...chocolate is helping.
Pain has been minimal balance not bad till i started cleaning my closet...sensory overload set in kept getting vertigo...tryed to ignore it and it turned into a full blown anxiety attack...had to stop and save the rest for the next day.I guess it was from looking at all the cloths and sorting them.
made some brownies w/ peanutbutter chips.
I have been more relaxed not running from place to place.
Lots of snow here lastnight but its melting fast.
Any one get sensory overload shopping?
I thought it was from the lights and isles but now i think its from seeing too much at once.
Title: Re: Throwing in the towel....
Post by: ombrerose4 on April 01, 2011, 07:06:32 pm
I still get that sensory overload feeling from shopping in large stores, but it is not as bad as it was 6 months ago. I remember the first time I went into a supermarket- thank goodness I was with my daughter. She had to hold onto me because I was getting off balance and nauseous from all the colors. It's alot better now, but I do try to stay away from large stores when I am by myself.
Title: Re: Throwing in the towel....
Post by: moe on April 01, 2011, 08:53:23 pm
Glad you had a better week, minus the vertigo.
Chocolate is good :) good therapy...

I HATE going into department stores. I get all disoriented and can't find my way back out to the car or mall entrance!
I do enjoy going to Kohl's. Everything there is always so nicely presented along the aisles. I also like going into consignment stores, where I can get dirt cheap, already worn clothes (good quality/brand names too). And the place is not crowded.

Glad to hear you are more relaxed too. Have you been back to the gym?
Maureen
Title: Re: Throwing in the towel....
Post by: cin605 on April 02, 2011, 07:38:21 am
No maureen i never did get back to the gym...I am hoping to sign up My son and I at Planet Fitness the price is 1/2 of the other membership.
sensory overload is strange...I get lost trying bto find the way out of stores sometimes too....whats even more frustrating is looking for the car after.
i love consighnment and thrifet stores too....maybe becouse of the small more relaxed atmosphere.
Weather is improving...Spring!
My head is tight today...i need to go grocery shopping    ::) Ick
my sister is trying to get me to go to her place for dinner...she is a little on the loud side..love her so.I may have to decline.
Allthogh the pot roast sounds good.Have a nice Saturaday!!
Title: Re: Throwing in the towel....
Post by: mrmel on April 02, 2011, 08:27:19 am
Quote
How long ago was your surgery? And what approach was done? Radical surgery? Gamma Knife? Let me know, then I may have some ideas.

Mel ~  Cindy's AN information is in her 'signature'.

2cm removed retrosig 6/26/08
DartmouthHitchcock medical center Lebanon,N.H.
43yrs old


Jim

Title: Re: Throwing in the towel....
Post by: cin605 on April 02, 2011, 03:20:13 pm
Thanks jim!
Title: Re: Throwing in the towel....
Post by: mrmel on April 05, 2011, 12:55:37 pm
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
Hi Cindy, it looks like you are about 3 years out of your surgery. I am 14 years out translabrynth. If i remember back the retrosigmoid and suboccipitol were more difficult surgeries than mine, even though trust me, mine was traumatic enough. If it were me i would talk to your surgeon again and make him reassure you that what you are experiencing is not unusual for your surgery, so you can be relieved that it is not something that is going to send you back into another earth shattering problem. People like us, when we go through something like this, it does not take much to throw us into a panic. If you can put your trust in the doctor after they reassure you  and then ask again what you can do to help the symptoms, that should provide some comfort. Then if that is not helping you could seek some alternative medicine approaches. A real good physical therapy center that has one of the new balance and vestibular therapy systems can be a tremendous resource, and they can also help you with a lot of your symptoms. I am 14 years out and last summer I had a bout with some serious balance issues for the first time since my recovery. After going to the balance center for about 8 visits, they got me back on track, nailed down the deficits and told me i was never properly rehabilitated originally, because they did not have the technology 14 years ago. So things are changing and they are making new strides. Keep asking questions, and researching. Do not be afraid to bug the surgeons, they are the ones that drilled your skull!!!! I hope this helps.
                                      Mel
Title: Re: Throwing in the towel....
Post by: cin605 on April 06, 2011, 09:43:41 am
Thanks Mel......i did speak w/ surgeon and he says that the scar tissue has shrunk a little and the problems i am having are not anything to do w/ the surgery?? ???
ENT on the other hand says its all post -op crap that probly isn't going to go away no matter how many peaople i get shuffled to.
i did vestub rehab for a year and the went back and di it again 6 months later....they got refered to the spine specialist who after 6 months refered me to sacral cranial therapy...
Soo...here isit today w/ vertigo /walking sideways,swelling behind the ear where incision was....muscles spasing out making my head feel like its shaking.Grrrr....
I ahve been going round and round trying to get a hearing aid...no ins wants to pay becouse i am not deaf in both ears??/
Audiologist suggested the hearing aid thinking this may be part of my balance issues..other side is not compensating.
Thanks everyone for all your help and advice.
HUGS!Cindy
Title: Re: Throwing in the towel....
Post by: mrmel on April 06, 2011, 11:14:25 am
Cindy
 What I think would be worth while for you is to talk to an Ent surgeon that is familiar with the new BAHA device which is a bone conduction implant that is installed behind your deaf ear, and then you attach a small device to that and it makes it seem like you can hear on both sides. It is the latest technology. Insurance in new york state pays for it 100 % with no co pay. I am not sure what state you are in but if you were willing to come to upstate ny i could refer you to someone that is superb in this field, he is nationally known. It sounds like you are getting some poor information.
                            mel
Title: Re: Throwing in the towel....
Post by: ddaybrat on April 24, 2011, 09:19:59 pm
Cindy...

I had same surgery as you although my AN was not as large as yours.  I am almost 13 months out from surgery and understand completely what you mean about throwing in the towel.  I moved from Indiana to Nebraska 6 weeks after surgery so no longer have access to the neurosurgeon that did my surgery, but have found a superb substitute nearby. 

I have suffered from headaches since the beginning...searing, totally disabling, horrific headaches.  My original neurosurgeon had prescribed hydrocodone for them which was continued by my general practitioner here in Nebraska.  I was popping them like candy with no relief until my sister told me about rebound headaches.  I stopped taking them and spent several terrible days cleansing my system of them since I had managed to become addicted to them.  My GP and I had a serious discussion about them and she started playing musical migraine remedies even though I kept trying to explain to her that the headaches were not migraines. 

When my current neurosurgeon first saw me at 6 months post-op, he was pretty confident he knew the cause of my headaches and that he could 'fix' them until he saw my MRI.  He had assumed they were related to either the mesh or bone chips used to close the surgical site in my skull.  What he found was that nothing had been used to close the 'hole in my head'...thus, he could find no surgical cause for my headaches.

A few weeks ago, I saw a neurologist for the first time since my surgery.  He asked about a specific medication I was taking and asked me to describe the headaches.  Within minutes, he diagnosed me with neuralgia and prescribed neurontin for me.  The searing, painful scalp pain is almost gone.  I've still had a few really bad headaches, but now I know there are multiple things going on in my head that are causing pain. 

I guess what I'm trying to say is that I agree with everything everyone else has said....
   1.  Medications can cause headaches and they can be horrible.
   2.  Sometimes, the best medicine can be no medicine.
   3.  Doctors don't seem to know how to treat us.  They try, but we seem to know more than they do about what is wrong with
        us. 
   4.  Don't give up!  It might be the next professional you see or the next person you talk to or who posts online that can help you.
   5.  We are always here for you...ask questions, vent, whine, cry, laugh, whatever you need us for...

When I was first diagnosed, my neurosurgeon sent me home and told me to search the internet and educate myself as much as I could about ANs.  That was how I found this website.  There is a study out here that was done several years ago so the data is no longer current, but it really helped me to have patience with the professionals I've dealt with in the last year.  The main thing that I seemed to learn from it is that while the ability to diagnose an AN may be improving, the post-treatment care seems to be a broken record.  I don't think it's the medical community's fault so much as that more research is needed.  While most of us out here may have had the same type of tumor and generally are still in watch and wait status or have had it treated surgically or with some form of radiation, I do not believe there are two of us that have had the same identical combination of post-op complications.  We can usually find at least one other person who has experienced a similar complication or two, but we each have our own unique set of complications.  I think that makes it very difficult for most professionals to understand us and to know how to treat us.  That's why it's so important for us to help one another.  If you don't find what you need out here today, it might be here tomorrow or next week or next month.  Just hang in there...we're all praying for each other.
Title: Re: Throwing in the towel....
Post by: cin605 on April 25, 2011, 01:52:31 pm
Great to kno i am not the only one.
I have picked the towel back up ..so to speak...I am now trying Myofacial Release.
Mei Mei has had some luck w/ it and her head aches are gone..I on the other hand do not have a problem w/ the head aches its more pain at the surgical sit radiating down the tip of my spine to the middle back area.therapist said its from the balncing act i have to do everyday..my muscles are tight and swollen around them.
Fingers crossed...this is the treatment.
All the Dr.s seem to agree that my vestub. is not right and may never be right.
Its been almost 3 years and the left has not been able to compensate.My ears feel full all the time not just right but the left also.Crappy tinitus in both ears...i have not lostany hearing in the left ear but right has high tone loss and percussis.
Trying some Claritan-D to dry things out...
Title: Re: Throwing in the towel....
Post by: jennifer7 on April 27, 2011, 06:45:10 pm
It is so encouraging reading everyone's posts, thanks for sharing.  It's great to know there's someone who understands, as much as I try to explain my family and friends think it should be finished.  They can't understand the pain and frustration I feel.  I want it to be finished too.  The worst is work, they are giving me a really hard time about taking time off for PT and to see the pain specialist.  I'm afraid if the headaches don't end soon my job might. 
Jennifer
Title: Re: Throwing in the towel....
Post by: cin605 on April 28, 2011, 03:42:46 pm
Jennifer...Have you looked in to your companys disability ins?
if you truly feel you can not work...and it has been a year...apply or SSD.
i needed no lawyer as i faxed them everysingle mri,dr visit ,PT ect....It took about 6 weeks.
Feel better soon,HUGS!Cindy
Title: Re: Throwing in the towel....
Post by: jennifer7 on April 30, 2011, 04:57:33 pm
Hi Cindy
Now I can work, a few months ago was a real struggle but the further out from surgery the easier it gets. 
My employers don't appreciate me taking time off for therapies and Dr appts for the headaches, I'm afraid they may end my job.  I know it is illegal to fire me because of my headaches but I'm afraid they will lay me off or cut back on my hours so much that I won't be able to pay the bills.  They have not been the nicest people since I came back after surgery before they were all encouraging; they have caused a lot of stress which I'm sure contributes to slower healing. 
I really don't understand people  ???
But I've had two cervical epidurals and its been 9 days without a headache :D so maybe things will get better at work for the next 9 days too ::)
 
Title: Re: Throwing in the towel....
Post by: lauralynn on May 02, 2011, 11:16:12 am
Hello Cindy,

I just had my 2nd year Post op anniversary.  I can understand your frustration.  I have gone to this doctor, that doctor, tried this medication and that medication...have tried everything under the sun!  I thought I'd feel a little better by now...but I feel pretty lousy everyday.  I wake up and I feel like someone beat on my face and head all night.  I'm tired and exhausted 24/7 and I deal with facial nerve pain daily too.  My body is so weak it's pathetic....feel so fragile.  I went back to work 6 months after my surgery but I am now on disability through my employer.  Like Jennifer...my employer was not too nice to me when I returned to work.  I even got written up for going to doctor appts.  I was on a final notice and was close to losing my job.  So very thankful that God made it possible for my disability to be approved (they denied it initially).   I've been off of work for a little over two months now and I thought that would help me to feel somewhat better.  I feel just as lousy.  So like you said...there are days I feel like throwing in the towel too.  I won't ever do that...I will never give up.  Us ANer's are strong survivors!  No one should ever mess with us!   :P

My best advice is to have a strong support system, keep in touch with the forum and get lots of rest.  On those days you feel like throwing in the towel...come to your AN family.  We are always here.  You can PM anytime.  Let me know if you would like to talk (i'll give you my number through a PM).  Have you looked into Pain Management?  I'm going to look into that for myself as well.  You are in my prayers.

God Bless,

Laura Lynn

Title: Re: Throwing in the towel....
Post by: Chances3 on May 02, 2011, 12:13:12 pm
Cindy,

Vent vent vent !!  I'm new here, but people have been so supportive.  I'm 6 months post op AN, I am fighting everyday to get my life back.  I have a very sick wife
who has been told by three different back surgeons your condition is too risky to operate on.  They are making her a bed ridden drug addict.  Not sure what your relationship status is, if you're a single gal, seek out a good friend for time and support, don't do this alone.

I have you in my prayers !
Title: Re: Throwing in the towel....
Post by: cin605 on May 05, 2011, 06:38:12 pm
Single...I am!I do have a great support system...My Mom and 3 sisters and 2 brothers and some very dear friends.Thank God.
Title: Re: Throwing in the towel....
Post by: Silver Sonnet on September 18, 2011, 06:26:40 pm
My family calls them rice socks, and the cloves or any other spice you like do smell nice.  (I like cinnamon sticks sometimes).  My daughter makes them to give out as Christmas gifts.

One tip:  if you store the sock in the freezer between uses, it will get even more steamy when you microwave it.  Now that I think about it, maybe I feel a sore neck coming on right now....

;)
Title: Re: Throwing in the towel....
Post by: Mei Mei on October 02, 2011, 04:45:20 pm
Dear Cindy,
I'm just catching up here and am just burned out from running around in order to recover.   I wouldn't wish this recovery process on anybody.

I also saw your comment about cable fees and would definitely drop the cable for the club.   Here is what my daughter sent me.  She gets free cable with a ROKU box that streams it to your TV.   It costs around $89 and for an Apple TV that does the same thing is $99.  ROKU has a $99 fancy box too.   Here's the scoop:

The box we have is called ROKU.  You can also get Apple TV.

Here is some more infomation about TV:

http://www.moneytalksnews.com/2010/06/30/you-dont-have-to-pay-for-cable-tv/
-

Go for it and then get the gym with hot tub membership.   Yes, Cindy, you can have it all!
Hugs,
Mei Mei
Title: Re: Throwing in the towel....
Post by: Mei Mei on January 08, 2012, 08:44:41 pm
Someone told me that red beans work better than the rice. Red Beans last two hours and we need all the time we can get on this.    I got to bed with it, nap with it and wake up in the morning with it on the sofa before I have my coffee.   My original bag that I got at Whole Foods and Amazon is filled with Flax seed.    There's a newer bag out by Earth Therepeutics with Lavendar and Chamomile.   

On the headache issue, I can't say enough for Dr. Ducic at Georgetown.    The surgery is simple and relieves all of these issues.   He referred me to a Neurologist who said I have Cervical Dystonia.   I am now scheduled and approved for Xeomin (Botox) shots every three months.
My new Myofacial Release Therapist is fantastic.  He said it would take four to six weeks and needling and strengthening exercises.   The needling broke up so much pain last week that I slept for 3 days.   They were not trained with Michael Barnes in PA but are certified in Myofacial Release Therapy and one of them in what is called Benign Paroxsysmal Vertibular Therapy.
Check out their resumes here where you can see the kind of certification you are looking for.

http://whiteoaktherapy.com/?page_id=2
They are against Botox shots because he says it weakens your muscles.    I gave them each others emails and they are discussing the matter to make a decision as to have I should proceed.   My Botox appt is Jan 26th.    We'll get this sorted out somehow.

I can't encourage you enough to go to Dr. Ducic.   Already several people like Liz from Connecticut and Tina Holmes from Tenn have gone and are so happy about it.   The surgery is a no brainer if you'll pardon the pun.   You will wake up easily and be ready to go home.

Here is his website:

http://www.drducicplasticsurgery.com/Ducic_Plastic_Surgery/Home.html

At least fill out the forms and wait back for what he suggests.   He won't invite you if he doesn't think he help you.

Here's to a healthy new year filled with Happiness and Good Fortune.
Mei Mei
Title: Re: Throwing in the towel....
Post by: Mei Mei on January 27, 2012, 02:41:52 am
Had a disappointment today when I went to Georgetown.     I had written the neurologist, Dr. Amjad a note about the fact that the PT I am seeing for Myofacial Release Therapy did not want me to get Xeomin/Botox injections today because of my Ehlers Danlos Syndrom.    Botox weakens your muscle and the pain I am having is neuropathic  with a lot of stinging and that kind of pain cannot be helped with Botox/Xeomin.

We have to find a way out of this circus.   I came close to throwing in the towel today.   We just have to survive and not give up on the long road.

Mei Mei
Title: Re: Throwing in the towel....
Post by: Dee-dee on January 28, 2012, 06:20:32 am
I would recommend a Buckey pillow for the neck (buy on line) and I was told as to meds, take them every day as prescribed.  You can't just take them when the pain is really bad because taking the medication intermittently causes headaches in and of itself.

You are not alone.  Don't throw in the towel...

Best
,

Dee-dee

Title: Re: Throwing in the towel....
Post by: pjb 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...
Title: Re: Throwing in the towel....
Post by: cin605 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
Title: Re: Throwing in the towel....
Post by: Mei Mei 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
Title: Re: Throwing in the towel....
Post by: cin605 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
Title: Re: Throwing in the towel....
Post by: Brewers7 on July 14, 2012, 09:34:22 am
So sorry to hear about your struggle.  Keep us posted.  Praying down south.
Title: Re: Throwing in the towel....
Post by: Jim Scott 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

Title: Re: Throwing in the towel....
Post by: wwarr 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
Title: Re: Throwing in the towel....
Post by: Mei Mei 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
Title: Re: Throwing in the towel....
Post by: lauralynn 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
Title: Re: Throwing in the towel....
Post by: Mei Mei 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
Title: Re: Throwing in the towel....
Post by: Gloria Nailor 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 !
Title: Re: Throwing in the towel....
Post by: nftwoed 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?
Title: Re: Throwing in the towel....
Post by: Gloria Nailor 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
Title: Re: Throwing in the towel....
Post by: nftwoed 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.