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Posted

Oh I do that. But I'm used to telling strangers about cerebral palsy. I feel like I'm an advocate for people with cp that are like me. I'm definitely not the image most people think when they hear of cerebral palsy. I'm fully independent, strong-willed and stubborn. Heck, I wasn't all that private when I had gastric bypass in Feb. This is just feels different and way more personal if that makes sense.

Posted

Prayers Up for both you and Mike as you work through all this Kat. You two will be in our thoughts and prayers as you work thru it. Glad to hear that your taking your time and getting as much info on it all as you can. Hopefully you do connect with someone who can be supportive with the ins/outs of that type of surgery.

Posted
...It might seem vain to worry about my hair. But in all my surgeries thus far in one way or another I was able to cover up the fact I'd just had surgery with clothes. I didn't have to explain to someone I didn't know or care to discuss the finer points of my case or why I have a new set of scars. If I am shaved partially or completely to do surgery, it exposes me in a way I'm not comfortable with yet. I'm aware hair grows back. I alternate between long and short hair every couple of years or so...

 

Not at all vain. Self image is a very important part of mental health. Mental health is essential to recovery of physical health.

 

You go right on worrying about your hair and do what is needed to make yourself feel right.

 

:)

Posted

Tricia, or someone on here, PM me your full name. At the church I attend we have an incensory prayer team, I believe in the power of prayer.

On the humorous side, nobody has ever accused me of having a brain that was to big for my head, in fact I have been accused of quite the opposite.

Posted
I have an 8mm chiari 1, I'm told that's usually pretty bad. I would love to talk with someone who has this and even if possible get feedback about the surgery and/or nonsurgical route as well. I have a lot of educating myself to do in the coming weeks as well. I figure if I have lived with it this long it's not going to blow up anytime soon either.

 

Let me talk to my buddies wife and see if she's ok with me giving you her contact info. If she is I'm happy to provide it. I also just emailed my wife at work to ask her if she'd talk to you. Hers is very mild, 2.5mm. She doesn't have many issues with it, occasional numbness in hands and a tingling sensation. Dr has repeatedly told her not something she needs to worry about at all, just needs to be monitored annually in case of any changes. I'll get back to you in the next couple of days with any info I can provide.

 

In the mean time, I'll be keeping you in my prayers!

Posted

I've had the numbness and tingling for years. The pcp and orthopedist both thought that I have a pinched nerve in my arms. I saw my ortho's PA, followup on the pinched nerve and weak shoulder. Now he's sending me back to the ortho to discuss the chiari and what that might mean orthopedicly for me. I haven't seen the pcp yet, that's next wed. I think he's going to freak. And if anyone is going to freak him. I will lol.

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