What can I Do

Hi Julia,

I'm 62 and my husband can't take care of me. I'm having so many symptoms after 2014 surgery it is unreal. I'm walking very carefully. I don't understand why I have such horrible neck and head pain. I go to the ER and told nothing is wrong. Thanks for your response.

I'm 61 and had my surgery 22 years ago. I still get neck and head pain but not every day. It sounds like you're in a pretty bad state healthwise. Is it all because of Chiari or are there other problems?

Thanks for your words of encouragement. I'm in assisted living and the pain in my brain,eyes,back, stomach and neck are getting too much. I get up about every hour. I'm a fighter. I appreciate your recommendations.

I have severe head pressure, neck pain so bad it's hard to sit up. I also have eye, ear, back, tooth pain,studder, unsteady walking. I had cervical fusion prior to Chiari decompression. I'm just miserable. The forum is helpful. Thank you for asking.

I think I'd be miserable too in your situation, it sounds horrendous!

Are you in the UK?

Surely something can be done to help with the pain, I don't know how you are managing to stand it all. Pains in the head are the worst kind to have to put up with because it's so hard to describe to others what you're feeling. Were you this bad before decompression?   

Hi,

I'm located in the big state of Texas. I enjoy seeing my grand children. Also talking to the caregivers at the home helps. My condition is getting worse and I realize I'm getting weaker. Acceptance is just very hard. Drugs don't work very well. You are right know one understands the pain.

Acceptance = defeat.

I too am a chiari survivor. I also have Syringomyelia, clawed hands, scoliosis, massive rotator cuff tears in both shoulders (unrepairable) so cannot lift  arms above waist height (combing hair, brushing teeth, bathing etc very hard), I have a  huge, unrepairable hernia, the list goes on and on. I will never accept that I'm anything but normal, I'd go insane otherwise. I walk the dogs but it hurts, I sculpt clay into fairies (it hurts) and I drive my car and yes, that hurts too.

I wish you lived in the UK.

You sound like you have already given up and that really scares me because I don't want to end up in a home. Is there nothing else they can do to help you, I feel so sorry that you're in pain constantly?

Hi Julia,

I've been to the Er probably 25 or more times. Talked to 25 or more doctors. I've had MRI and ct so many times it's probably medically unsafe to do another. I've taken at least 25-50 different meds. On the bright side, I have a wonderful family that calls me, sends me pics. I do get to go out once a week. My balance is not good but I get up and walk about once an hour. I'm happy you are doing so well. Keep in touch.

Yes, I think you're right in that too many scans can be unsafe, you've really been through the mill though. Doctors can be so frustrating. I remember seeing a shoulder specialist a few years ago and he was examining my hands and noticed brown stains on my fingers. He was disgusted to learn that I smoked like a trooper, 'Don't you care about your health' he shouted at me. 'What bloody health' I shouted back!

I don't smoke anymore but sometimes I wish that I did, I am rather fat though so perhaps I should give up chocolate as well (maybe taking up drinking would be a more satisfying adiction, at least you become oblivious to everything).

Do you think you'll ever get out of there and go home for good?

In answer to your question, I'm keeping my options open. My husband doesn't live too far. He just retired and moved to Tx. My addiction is chocolate too. I bought my 4 yr old granddaughter a box of her own for Christmas. My husband smoked for about 40+ years. He came home one day and said he wasn't smoking anymore. We believe God delivered him. Now the drinking thing he still has that vice. He was a broadcast engineer and sometimes with a party crowd. BTW- where do you live?

I'm in the very wet and miserable UK.

We became grandparents for the very first time last year, she's 5 months old now but I can't hold her because  my shoulders just can't support any weight but I can sit with her on my lap propped up on a pillow.

I think you're doing really well to still have faith in a God, I'm pretty sure that there isn't one though.

What did you used to do before you became ill, did you work or have any hobbies? I used to be an electronics engineer and loved to swim in my spare time. I really miss both now very much. I miss the companionship of a work enviroment and I miss being able to splash about in the water!

Did your husband not live in Texas before he retired?

I'm originally from Ga but I moved to Tx because my son and family live here two years ago. My husband got an infection in his legs and had to stop work. He moved from our house this past November to an apt in Tx.

We have a 4 year old granddaughter and a new grandson born on 12-16-16. He was born on his gra

My grandson was born on my husbands and his mothers birthday. I have two sons and the other one lives in midtown Atlanta and is a Research Scientist at Georgia Tech. He is single.

My work experiences included 13 years in cable television, 4 years at a hospital Human Resources. My last job was almost 10 years in Risk Management and HR at a county government. I finally got my BS in Management at 46.

I played piano and organ for years at church. I love to swim and sew. Hopefully haven't bored u. Where do you live in the U.K.?

I'm not bored, just fascinated - we are so alike.

We're almost the same age and both have chiari.

We both have 2 sons - one married and one single, mine are aged 35 and 23 (big age gap).

I trained in radio and telivision repair.

My youngest son was born on 16/12/1993 (we write it differently, 16th Dec 1993).

My husband broke his leg in several places a few years ago, now the metal rods are playing up and his skin is infected.

I played the piano accordian as a teenager but I couldn't do it now.

We live in Berkshire but I'm originally from the new forest.

It sounds like you have lived a very full and active life, you must be so frustrated now. I feel like I'm trapped in a useless body which is ageing far too quickly. Being ill is exhausting especially when everyone expects you to look on the bright side and be cheerful!

That is amazing regarding the similarities. My oldest is 41 and youngest is 33. Rodney my oldest works for 3M. He was in Germany, France and Progue last week. I'm concerned about his returning.

Anyway, you are welcome to email me. Maybe we can cheer each other up.

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