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caregiver & wife to husband who suffers from Chiari Malformation

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Old 10-06-2017, 03:42 PM   #1
Katrina Huhtala
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Join Date: Oct 2017
Location: Edmonton, Alberta
Posts: 3
Default caregiver & wife to husband who suffers from Chiari Malformation

Hello,
If anyone could help me understand how to accept that my husband has a disease (Chiari malformation), how do I cope, how do I help him and us. My husband was diagnosed back in 2000with Chiari, he has under gone 2 decompression surgeries, we have raised our son together, we know that he has this disease, but we have never really addressed it until 2 months ago when he "admitted" to having the disease.
I have recently also have come to the realization that I am his caregiver before his wife.
I never understood before why I "explode" every 3 months until I started doing more research.
During the last year, our marriage has been rocky and that is due to me, which I know is totally unfair to my husband, I know he is doing the best he can daily. He has been working daily, been a rock for me when I have needed it and has been involved in our sons sports, and raising of him.
We are both in our 40's, and have another surgery to look forward too . My husband will be going to get his neck fused I believe within the next few months as the decompression surgeries have left a build up of scar tissue which is now wrecking havoc on his neck. His spinal column has gone from 13mm to 8 mms and he suffers from bulging discs, disc degenerative disorder and arthritis. His neurologist has told him that if he looses any functions or has numbness (which he does daily) to get into the ER immediately, said that to him a year and a half ago and we have been living on eggshells since. Thankfully his pain specialist has pushed forward for another MRI which we get the results on Tuesday.
I am looking for anyone or support group to be able to talk to someone so that I may be able to help my husband and not hinder him anymore with my emotional nonsense as he doesn't need that as well.
Thank you to those who have read this, hoping someone out there is maybe going through what I am going through and maybe we can be supportive to each other.
Have a fantastic thanksgiving weekend 😊
Katrina
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