Chiari Malformation Community
Not sure I'm ready
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Not sure I'm ready

Ok. Here's the news. I am officially scheduled for surgery on the 27th of July. My surgeon which me and my family like decided I need to be evaluated by endocrine and physical therapy before hand, so I'll be leaving on the 23. I found out yesterday my caregiver can't leave work not even for the last days like mom wants. I normally wouldn't care, but I'm getting nervous and want someone there helping me get through it. My family really can't. The good news is my sister and her best friend (that the family jokes we should just make it official and adopt her) are trying to get the time off to go. No one is coming on the 23 with me though just the 26, and I'm not sure when their leaving. Ironically I got what I want, but now I'm nervous. Bea (caregiver) is going to try again on Monday to get it off. Asking family to come early is out because they drive me insane as it is. I can't ask the best friend because she won't be able to take that much time off work. I'm tempted to ask Gurpreet my roommate, but I think the staff will be expecting more capabilities from her than she has (her psych conditions haven't improved). My other roommate doesn't like leaving the town. Plus she hates staying anywhere but my house when I'm home and her house. She couldn't handle the housing all by herself.
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620923_tn?1405964489

  Hi, I know this is a diff decision to make especially going by urself....and being nervous that is normal regardless of who is with u...when u go to the OR u r alone....BUT, we all with be with u in spirit, imagine all of us holding ur hand....

Plus when u first wake up in the ICU or recovery u will not remember who was or was not there....and u will sleep a lot.

And I am sure if ne of our members r in the MD area they may be able to stop by for u.....but do what u feel is right for u, do not worry about all the details they will fall into place.

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Avatar_f_tn
Thanks.

I think the good news is since I'm going early for pt that means i'll be started right away. That's one of the reasons I didn't want to have it here. 2 days in patient after surgery. That feels like drive thru surgery to me. In Maryland, it's an average of 7 days.

News on the mri's. Dr. Heiss said he didn't see the spingomylia (I forgot how to spell it). That was with the flow study and the mri of the spine. I just thought of something. The hydromyelia was shown on my mri pre cervical traction. There's no sign of it now. I'm doing worse with my symptoms but there's no hydromyelia. I wonder if the traction did work. Not that I would advocate it. I think I'll email the doctor and see if he has any thoughts about that.

I made another friend who cheered me up. She is from Jamaica and has chiari too. She also had 2 surgeries. One in Jamaica, the other in Maryland. She had hand problems since 8 and diagnosis since 25. I got her phone number. She made me feel better enough for me to decide not to do this surgery on emergency basis (the only way to get it done now). I met her on the way to the flow study mri. You may think I am going to a place where it is more likely than not that I see other patients with it but your wrong. Even in the department to see the doctor I had seen more patients with other disorders than chiari. I asked. I was happy to meet the two who had it too. :) We can add them to the family. Unfortunately, my friend isn't a computer person, so she couldn't join us here. :( Although she did seem to be in a lot of pain (I helped her with the pain survey), her functionality is much much higher than mine. That makes me feel a little better about the surgery. I'm still nervous though. It's not my first surgery though. It's just that it's the spine and it worries me more.
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1306714_tn?1327260680
I know how nervous it is before going into surgery.  I was blessed enough to be able to have my surgery in my home town.  As far as having someone with you I know  it is disappointing, but for me I actually asked my family to keep away as much as possible because I knew coming out I wouldn't want a lot of people around me.  I have a very supportive family and so loving that if I didn't ask them to come for short visits they all would of been there like bees on honey trying to help.  My DD and Husband and son was there to take care of me, and family did visit, but they would only come and not do much talking and I always had the lights off and during the 1st couple of days didn't even have the T.V. on.  You will have lots of activity with the nurses so you sure won't be alone.  Also as Selma said we can't be there, but we are in your heart, and our chairian spirit is there to help you through this.  Just try to relax and think of better pain free day's ahead.  It is all worth it.   Your not alone, you have a world full of Chairian family.
Linda :)
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Avatar_f_tn
Your reassuring. I just wish I knew the people taking care of me. If that wasn't bad enough, I have to tell the social worker that I'm in the hospital because she can't be there. That means no pay for my caregiver.
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