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Post by juliefromca on Jun 30, 2008 3:06:09 GMT -6
My biggest challenge is that I just got diagnosed two weeks ago and I am terrified about the surgery- will I wake up unable to move? And what will the recovery be like? I know that none of us have had the luxury of knowing this, but I still can't stand it. And if my sister in law makes one more comparison between this surgery and her tonsilectomy I'm going to punch her! I just feel so lucky to have found this site- I hope it will get me through the next week before my surgery on July 7th! Thanks for listening!  |
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Post by chickiet on Jun 30, 2008 6:40:13 GMT -6
My biggest challenge - not driving...
My feet are very numb and when I tried driving several months ago, it wasn't good. My right foot is the most numb and it would sometimes fall off the pedal, or I'd hit the gas and/or brake too hard or too soft. No wrecks, but I really didn't have any sense of control. When I told my NS that I can't feel my feet and it's difficult to drive, he said don't drive until I can feel my feet.
The issue - - total loss of freedom. I am not able to go anywhere by myself. I need rides for everything.
I haven't pursued hand controls yet because I keep hoping the numbness will go away enough so that I can just drive normally. But I'm not sure how long to wait...
Chris
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Post by susan on Jun 30, 2008 17:45:03 GMT -6
Julie,
I know how very well you feel. I was diagnosed in January and had 3 weeks to wait for surgery. I hoped and prayed for the best and prepared for the worst.
I redid my will, did medical power of attorney, put family on my bank accts, wrote detailed instructions about my life in case I couldn't return home right away. It helped to pass the time and I felt like I was controlling what I could. I'm thankful to say they didn't need it as I was able to come directly home from the hospital. But as a bonus, my legal stuff is now in order.
My brother kept comparing my illness to his ruptured achilles tendon surgery & ACL repair. I'm sure that was painful, but sorry, not the same thing.
When my family would try to reassure me (by telling me not to cry, what's the matter with you!) I told them I felt like I had an appointment with quadriplegia. They did admit they would have been scared too.
Just to everything you can to give yourself an advantage, if you smoke, stop now. Get all the pretesting done as recommended. Think positive thoughts as you are drifting away under anesthesia....
If you believe in prayer, don't be afraid to ask anyone/everyone you know to remember you in theirs. I felt like I had an army behind me, fighting for me.
You will be ecstatic when you wake up, move your arms and legs and discover they all still work! You'll be surprised how fast time goes after surgery. I'm going for my 6 month MRI in July.
In the meantime try to get some sleep and make sure you eat (2 things I had trouble with pre-op).
I'll remember you in my prayers.
Susan
ps-if you go straight home after surgery (and don't need rehab) think about getting a hospital bed for home for the first few weeks, if your insurance will cover it. I also got an elevated toilet seat (if you have a low toilet) and shower bench. You can get those at pharmacies, or places like Home Depot or Lowes. They were lifesavers for me. You'll be surprised how far away the toilet seat seems when you are sore. Standing in the shower, forget it, that wouldn't have happened. It was 1 1/2-2 months before I felt up to that.
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Post by drummer904 on Jul 1, 2008 8:00:00 GMT -6
Chris- i agree with you, i need rides everywhere i go too and it's killing me, i always loved just getting in my truck and going places, traveling is one of my favorite things. Im losing my patients with waiting for the feeling to come back and want to get some hand controls. I found a set of portable hand controls online for like $300 i think i want to try them, could always sell them on ebay if i dont like them. Thing is, i'd have to sell my (manual transmission)truck and get an automatic.
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Post by Tmasgio on Jul 1, 2008 15:22:04 GMT -6
My challenges I face head on like everyone has to on this forum. I cried,laughed,gave up, gave in, accepted and now I feel free to do what I want when I want just whatever my body can handle. Everyday is different as somedays I feel great and others not so much. I learned that I have adapted and try everything as long as I put safety first. We all can accomplish many things as long as you are driven with a positive attitude and great support system. I am blessed in many ways,maybe to many to count. People will never understand you or what you go through. I just chalk it up as Pain is personal. I do not dwell so much on what I used to do. In someways it is not so bad to slow down. I spend more times with my kids and love every moment. I care more and love more.. Life is not all bad!
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Post by Ali-Brad on Jul 6, 2008 3:40:43 GMT -6
Hi
I've enjoyed reading these. So much is true. Pre-op and post I suppose, friends refer to their operations as if they fully understand. I know an operation for piles is probably not pleasant, but isn't quite the same as someone cutting into the very cable that conects your brain (vital) to your entire body.
I think my biggest challenge, as with many, is accepting the new me. I have so much to be thankful for, but I hadn't realised at the time of surgery, the long term effects. I knew there would be post-op recovery to get through, but I thought the surgery will work or not work, I'll recover or not, but it's living (4 yrs on) with all the side effects of surgery. Pain, stiffness and nerve damage issues are challenging day, after day, after day....................
And yes Joel, you made me laugh. I think the changes we notice in this area are frustrating. Oh to be normal again and not give it all a second thought !!
Alison
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