Question

Dealing with the things, pain we kept dealing with… I have a question. In this journey i dont get headaches/migranies often… I get neck pain, shoulders, back… Numbness jaw, and some weird feelings that cant even explain. My question is… Is it usual to get hurt or is it my
Imagination whenever i make a “weird move” or try to put efford on something. Do we get hurt or is ot me being
Paranoid.

Hello Glory4,

I am very new at posting.

I can definitely relate to your symptoms. I too have discomfort on my arms, shoulders, neck and hands. Even my veins pop if i vacuum or clean for too long. I feel as if my face "cracks", my jaw feels numb, or just painful. I started having issues like tunnel vision, very scary episodes and overall a miserable feeling, specially because no one else can see or feel the way I feel.

I finally got my surgery schedule for September 24th. I understand it may not cure everything I am experiencing, but it may stop from getting worse, and that itself, makes it worth it.

I have not figure out a way to relieve my symptoms, but I have become very spiritual, and that seems to help me endure what it has been a very interesting existence.

I can assure you are not being paranoid, is just hard to comprehend you can have an endless list of issues and sometimes not a real answer as to why or at least for me it was 16 years of being labeled as crazy or a desperate person trying to get pain medication.

I hope I did not go WAY-off topic here, will keep you in my prayers :)

Ahh I will keep you in my
Prayers too. I never experience any symptons before a surgery i had last year due a cyst growing on my back. I do still have half of the cyst connected to a shunt. From then and around feb I start having issues like vertigo, dizzy, neck, shoulders, and all those things. I have my surgery schedule on oct 8th. And Im kind of scared. Not only for the surgery but for what may come after that. Am i gonna be able to do normal things again? I cant even take care of my dog or play with my
Nephew or cook ( I loved cooking) I will also gonna have my surgery 3 hours from home so Idk when I will be able to go back home. If everything goes well of course. Best of all for you! Hugs

My goodness, you already had a surgery!

All I can say is prepare ahead of time, I do hope you have someone you can count on to assist you, I guess that would be the hardest part, not being able to have a shoulder to lean on. I too have a dog, and it breaks me to think of not being able to take care of her. I know how easy it is to not feel as positive at times, but try your hardest to keep a positive outlook, you will recover from this and be able to do all the things you love. I can be your online shoulder to lean on, if you ever need someone to talk to.

Hi!! Thank you for your kind words, it means the world for me and You can count on me too. Thank you again. I do have an amazing aunt, my cousins, my best friend and my mother ( even tho she might be so difficult and seems to not wanting to know how i feel, she cares more about her house, and other things) I try to be positive but sometimes is hard. I wanna wake up and see how everything was just a bad dream and that Im fine. I wanto to be able to work, i also love my dog, i want to go out with my friends or feel normal again. I have push people out of my life because I’m not that girl I used to be… I hope the surgery helps and i hope I can get to live again. Thanx again and I send you a warm hug. Wishing you the best on your surgery. Hope you have someone that can help you and be with you too.

Hello!

You are very welcome! this may not be the best way of getting to know someone, but you do your best with the cards you've been dealt.

I do have two daughters- 21 and 16. The oldest has behaved in a way that amazes me and makes me extremely proud of her. My youngest is a very sensitive girl, and well, 16. The world is different at that age.

When my mom found out about my Chiari, well, she thinks if I get a job and occupy my mind on something positive rather than make things up, my life would be better. I have decided in my head she is as scared as I am and she is in denial =)

I guess must of us, with chronic pain, get to see the list of friends getting smaller by the day. The wonderful thing about it is, I may not have a ton of friends anymore, but I can assure the ones that have stayed by my side, have got my back.

I am freaking out about my surgery. I feel useless right now, in pain all the time, but I have a feeling it will no compare to what's coming my way, I hope I get to be as strong as I think I can be.

How long have you been dealing with CM?

I’m glad you have people around you that helps tou deal with this. I found out about my Chiari and siringomelia by “accident” never wver had symptoms but after my surgery. I jad an MRI due the cyst they found on my back and they made one to see if there was something else. Thid one would be my fourh surgery I also had a tumor whenmI was 19 and it damage my lower back and some bones do i have implants that made me almost impossiblentondo certain things. Things went “well” for awhile I recover and years after they found a fibroma on my right hand nothing bad and the surgery was quick i was even awake. A while after I had a convultion and I faint. It was just one time but my dr forbid me to drive and do certain things. On june 2014 they found the cyst and the chiari/siringomelia but since I had no simptoms doctors focus on my cyst. On march 2015 i start with vertigo, dizzy, and burn sensations. Dr said i can be treaten with meds (lyrica) and it helped. Around may I had a fight with my mom made a wrong move and hurt my neck. From then everything went to hell. Neck, shoulders, nack, leg, jaw, numbness and weird feelings that cant wven describe. My Dr told me I needed surgery. But ine day i felt terrible went to ER where they confirm I needed not right away butnit was a must. Had a follow up with a neuro in San antonio since there are no neuro in my town. Had my appointment and now Im waiting. Taking meds such as lyrica, a bupermorphine patch, alpazoran and and some drops that help me with my panic attacks. Pain is there and i dont know what will happen after the surgery. I dont have a hundred friends but the ones I have are more than enough. My aunt, cousins, my
Puppy make my life better. My best friend comes to visit me often and my mom is there. Im single I dont have kids and for what I know ai wont be able to be a mom.