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Update on HopeLiveHere...
Hi Everyone,
I received an E-mail from Hope today and she said to tell everyone Hi and asked me to let all know that she is doing very well... She has had spinal headaches from the surgery but today she is feeling better.. Here is some of her E-mail that she asked me to let you all know about.. Other than that the surgery was a complete success so far. Anything over 50% of pain relief is a success so I'm a big success. When I woke up from surgery almost all the burning was gone, the swelling was going away and the color changes were going away too. My shoulders are somewhat better but not completely. The burning is only slight in a few areas. I should have had this done years ago. My spine incisions are not painful but the abdominal incision where the pump is hurts a little. My binder helps with that. She said to tell all Hi and Thanks Everyone for there thoughts and prayers... Many Hugs :hug: Dawn |
Hey Dawan
Thanks for passing on the message, and tell Hope how pleased I am that it went OK and give her my best wishes for a speedy return to life, and the forum, we miss her, all the best :) |
Hi Dawn!
Thank you so very much for informing us of Hope's surgery. I am so very happy for her that she is getting such good relief from the morphine implant. well, again.. thanks for the up date! I was meaning to ask you, Dawn.. is that your dog?? if so.. I want him/ her:D Big Hugs Dawn.. Big hugs Hope Love, Desi :hug: :hug: hey, lady.. how are you doing these days? :) |
Thanks for posting that for me Dawn.
I have my own miracle here. I had my post op visit yesterday. I had an eight day spinal headache, that is just lifting today. The surgical sites are healing well. Now that the swelling is gone I can see how wasted away my arms and ankles are. Skin and bones. I will need some physical therapy to gain strength and stamina back, but that should be easy without all the skin, muscle and bone pain. I'm not sure why doctors don't use these more often to stop the suffering. I had to wait 3 years for mine but I'm glad I've done this so far. No side effects from the neuroleptics and pain pills. I'm beginning to feel normal again and it has been a long 5 years since I've felt normal. It will be interesting to see just how much I'll be able to do. I'd love to go for a walk but it will be awhile yet before I can do that. Time is still limited here, so I am signing off now. I wish all a pain free night, Hope |
Hope, it's wonderful to hear from you. I am sooo glad to hear everything went so fantastic... you sound bright and chipper and... ummm... HOPEful :p
Hearing stories like yours help the rest of us feel better, too.... thanks! |
wow!.....wonderful news!!!!!!
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Hi Hope,
This is one of the best bits of news we've had on the forum for a long time, you sound like a different person; when you get the time, no rush of course, you must recap on exactly what they've done. Glad the spinal headache is receding...you just sound so great! I'm so pleased for you, :hug: all the best! |
Hey Hope,
Good to see you posting GF :) :) I am expecting that when we get together next winter that you will run circles around me... I am sooooooooooooooooooooooooooooo :icon_lol: happy for you. I have never heard your voice sounding so relaxed since you & I met real time 3 yrs ago. Before your voice was always so strained with pain. I sure am hoping one day, for you to hear my voice as relaxed as yours does now. Maybe I should start talking to my doc about a pump. I only seem to have less than a half life cause most of it I am either asleep or wishing I were alseep *LOL* due to all the drugs I am on. Sometimes functioning is so hard to do. I have my 'spoons' all used up before noon it seems. WOW!!! I truly tickled to death for you. I bet your hubby & Karen especially are excited :excited: I can't wait until you can get all your muscles built back up & you get out there & are able to start doing some of the things you use to be able to do. Major :hug: 's your way GF!!! Always, DebbyV |
Hey Hope
THAT IS SO AWESOME! you sound the best I ever known you! I REALLY hope this is going to be your answer... who knows... a marathon next year? I'm so so so pleased for your hunny and PLEASE let us know what happens!! I want to hear all about you going clubbing all night, going for hikes, walking mountains, learning to do handstands etc! Love ya hunny!! Frogga xxxxxxxxxxxxxxxxxxxxx |
Hi
Artist, I'm not sure how much you know about the pump. In your situation is RSD in one extremity? Then maybe the stim is better, unless like me, you are dead set against those. When it has spread to more places like mine did, and I knew I'd be taking toxic medications that didn't even work anyway, for the rest of my life, and that I'd have no quality of life, then I knew I needed to talk to lots of people who got the pump. Everyone who had it said they wouldn't give it up for anything. Even people who only got 75% pain relief love it. They make 2 incisions in the spine to put the caths into the epidural space while under IV sedation. I never felt this as the area was also well-numbed. Then they turned me over, gave me general anesthesia and made an incision on my right side below the rib cage. They stitched a pocket in there and inserted the pump into the pocket. They loaded the pump with morphine and clonidine and stitched me up. I'm good until October!!! If I need an increase I can go to the doctors office and get one. It's so nice not to take so many useless pills. It is so strange how the (blocks), the SCS and the pump take care of the swelling sweating and color changes also. To me It proves that this is independent of the peripheral nervous system. The brain is just not going to stop firing pain signals unless something interrupts it. My pump also comes with a hand held bolus button if I should need a bolus. I don't have that part yet. Yes, my life has without a doubt changed for the better. Deb, I don't know about running but I sure hope to be walking distances by then. And I cannot imagine next winter that the cold will not intensify my pain but it shouldn't.. This was my thinking, not that I'd advise anyone to do anything, but once a person is in their 50's (or even in their 20's if they are fed up with RSD and pain) and they are ready to get rid of the horrible pain and meds, the pump is the thing when RSD has spread everywhere. Anxiety doesn't have any affect on the pain now. I mean going through the risk of all those blocks, putting one's body through taking toxic medications with less and less relief, knowing I was going to end up with the pump, I thought why wait any longer? Why put off the relief? Ahhhhhhhh Just reading on the website where people with pumps have a forum, made me realize, I've waited too long as it was. They take cocktails of morphine, fetanyl or dilaudid, what ever pain med you use, add in clonidine, muscle relaxants and / or bupivicaine also. They use such minute amounts of the medications and get good effects. Don't get me wrong, every surgery has it's complications, but this is where I would have ended up anyway. So for me it was the right time to do this. My life won't be what it was before after the years of RSD trauma though. People don't talk about it too much on the forum. Maybe few people have one. I know a lady named Sheila got one and after healing, she left the forum because she's too busy living her life. Frogga, love, you are still hanging in there with all you have gone through? Whadda woman. I read your posts so I could keep up with what is going on. You are like me, "OK, now lets see what is going to go wrong next?" Because you know it is going to happen. But I'm glad you have your bed and things are getting into place. I cried when I read about you in bed for 18 hours with no carers, or way to turn or eat. That is inhumane. I'm surprised at all the people who have noticed the changes in me. My friends and relatives who have visited and called notice it right away. They say they haven't seen me look this way in a very long time. My face is relaxed and I feel like my future is more positive than how I was living. I was getting to the point where it was difficult to finish feeding myself a meal. And choking on food, which I still do sometime, but I am sure that is TOS. I'm so happy I've been given a break. I can't wait to heal enough to go outside and walk up and down the street. Who knows how much longer my husband could have lived with me this way? He never complained but he is near retirement and I'm sure he did not want to spend it taking care of me and seeing the pain day after day. He loves asking me how I'm doing when he gets home at night because he knows he is going to get a good answer. I sure hope my story has brought some joy into at least one person's life. And some hope too. I've always said Hope IS A CHOICE. We can choose to give up on ourselves or choose hope. Take care everyone and I hope you all have as painfree as possible weekend. And I hope you are looking forward to something wonderful blazing ahead for you on the horizon. Huggs :hug: Hope |
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