Good and bad, beng on 9 days out I am not really expecting miracles nut still believing for one. Pain at incision as well as very intense headache, but feel a litle different. I think the progress will come slowly but surely. I am still a little frustrated by people you think I can just resume what I was doing like nothing even happened. The other burr under my saddle is now people are comparing my decompression to some of their surgeries like hernia or having an apendix (SP) removed. I mean get real folks yes you have had surgery but how close to your brain were they really and I do not recall you having a 6-8 incision on your neck and skull. Heck I even had a friend tell me now that I am better if I take more vitamins I will never have a problem again.
Anyhow followup with Doc B on July 31, follow up with PCP 8/8 and social security disability hearing on 8/9. So who knows what all the outcome will be but remaining positive.
Morning Michael. So glad you are getting better, be it slowly. Some people dont understand what we have or how crappy it makes us feel. Keep your chin up and keep us informed on how you are going. Cheers :)
Hang in there. Don't forget the muscle relaxants as well. Pain meds for me didn't cut it until I got aggressive with the muscle stuff. Just keep talking to your doctors office so they can help you work it out.
Just an hour ago, a friend was telling me her story about abdominal surgery (don't know what kind), and so we were talking about how it was muscle pain for me (my surgery was July 2). I mentioned that they had me open for around three hours (well, who knows exactly how long, I was asleep at the time--joke), and that was why my muscles required such serious help. She did a bit of double take, because apparently she was only open for under an hour, and still had her own muscle issues. I think maybe the comparison made her realize why I might be taking a while to recover.
One other tiny thing to hold on to. For me, my recovery on a daily basis is very up and down. But week to week I see real progress. If there are certain markers in your week--maybe going to church, or watching your kid play softball on a Thursday, perhaps this will be a way to encourage yourself. I mean, last week, you were probably still in the ICU! You've come a long way.
I'm so glad to hear the update. It's only 9 days and you had about the most invasive surgery there is. I had a decompression and I also had my appendix out (6 months later) and I can tell you the appendix felt like having a splinter removed compaired to the decompression which felt like having a splinter removed from your head with a Mac Truck running over it! LOL Vitamins? How come we didn't think of that? LOL Okay enough with the lame jokes. We are all pulling for you and praying for you. Don't rush doing things. Let your beautiful family nurse you back to health and be kind and patient with yourself. Keep us updated we missed your posts.
So glad to hear you are on the mend! Sadly it's human nature for people to try to one up each other. There is really no way to compare even if both people had the same surgery. Me and my husband both had our gallbladders removed and I was feeling great within hours, he was bedridden for days! I really don't think I would compare any other type of surgery to yours though...obviously it's a no brainer (pardon the pun!) that invasive surgery on your neck and skull will be worse than an appendix!
I'm glad to hear from you. It's helpful hearing what people are experiencing so if I get to that point I know what I can expect...
I have the same problem with people comparing their situations to mine. My room mate especially - after my first trip to the urgent care, he started moaning about how much his stomach hurts and how he should go to urgent care, too. Then he said, "I have XYZ symptom, what about you?" My mother is just as bad - she called and asked how I was doing, but immediately after said, "Oh, I had to take the day off because I'm SO dizzy. It's probably worse than your dizziness."
Pretty sure this isn't a competition! It doesn't matter who is in more pain! I am finding myself frustrated when people complain about their problems to me as well. Oh, darn, you had to work some overtime this week? Gee, your crappy car finally broke down (totally not unexpected) and you didn't save up the $100 to fix it? Aw, your boyfriend couldn't come over to visit tonight? GUESS WHAT MY BRAIN IS LEAKING OUT OF MY SKULL. I try to be patient but after five weeks of feeling like death warmed over I find my patience wearing very thin.
I completely feel your pain. I had decompression surgery less than a week ago and people expect me to run marathons already. Normally the first question is “are your symptoms gone” and then they tell me about the horrible headache they had for a whole HOUR. Woah, I’ve had a headache for years, plus I just had my head cut open, so no, don’t care so much right now. It’s hard to be patient with people, because their lives go on and you’re still stuck in pain and the haze. I just have to keep reminding myself that people are trying to be sympathetic and remember that they only say stupid stuff because they don’t know any better.
I am so glad you are up to posting....Just ....9 days out ! Don't let others bother you by comparing their surgeries with theirs ... Sometimes I think we need a letter explaining to people about CM: dx, treatment & prognosis & all symptoms!!!! Then you could just hand them a piece of paper and say.....If you still think your surgery/illness is comparable to mine....we can talk...Fools...I can say that I was born on April 1st !!! ; )
I am so glad that you are home and at the computer!!!
The 1st few weeks are going to be rough..good and bad days , like you said.
I know what you mean when you said people think that since you are home things are going to be A-OK with your health.
Like Tracy said..try not to let others get under your skin by comparing their surgeries with yours...inside, just laugh at their ignorance..how can one compare getting their appendix out with having ones skull cracked open???? Really, why do people feel the need to say such foolish things????
Know that we are all here for you...come to us for support and understanding..cuz we know how it is!!
Hey mike, I am so glad you are home and also thankful for your honesty! Some people are complete idiots! They tell me Julia looks great and you should be happy that’s over -over you stupid people- be around when Julia sneezes and tell me when I can breathe again! Sorry for venting but anyone who has had the decompression surgery knows its not like any other surgery and it’s not a cure, my 10 year old still has chiari I just let a surgeon open her skull to prevent more and worse symptoms! Happy to have you back on our side! Much love, Nicole
I wish people would understand how much this surgery affects the body. I am five weeks post op and some days still feel like I can only make it through the morning, then I just need to be done for the day. My NS said it would take a year to feel normal again…as our brains are adapting to the changes that have been made. All,I can say that I still need naps and meds ( mostly for my neck), but I do feel myself getting better.
I have not yet had this surgery but it looks like I am heading that way. I read everyday on here and I am just trying to decide whats best for me. It is all so scarey....but the way this disease has taken over alot of the things i love in life is probably even scarier...I too wish people would understand, but maybe thats why I am here with this...maybe I need to educatemore people about it....IDK...at any rate Michael I wish you a full recovery and will be praying that each day will bring you to feeling better....I am scheduled for a consult with DR.B on Sept 6....is he truly a Chairi specialist and did you like him?
Jenutny said:
I wish people would understand how much this surgery affects the body. I am five weeks post op and some days still feel like I can only make it through the morning, then I just need to be done for the day. My NS said it would take a year to feel normal again...as our brains are adapting to the changes that have been made. All,I can say that I still need naps and meds ( mostly for my neck), but I do feel myself getting better.
You just made me laugh out loud, something that's pretty rare these days...I just love the MY BRAIN IS LEAKING OUT OF MY SKULL! My neurosurgeon (1st one) said "Well, basically your brain is just too big for your head" which friends and family found humorous, I'm a CFO so people say it goes with the job!
7thhousedoula said:
I'm glad to hear from you. It's helpful hearing what people are experiencing so if I get to that point I know what I can expect...
I have the same problem with people comparing their situations to mine. My room mate especially - after my first trip to the urgent care, he started moaning about how much his stomach hurts and how he should go to urgent care, too. Then he said, "I have XYZ symptom, what about you?" My mother is just as bad - she called and asked how I was doing, but immediately after said, "Oh, I had to take the day off because I'm SO dizzy. It's probably worse than your dizziness."
Pretty sure this isn't a competition! It doesn't matter who is in more pain! I am finding myself frustrated when people complain about their problems to me as well. Oh, darn, you had to work some overtime this week? Gee, your crappy car finally broke down (totally not unexpected) and you didn't save up the $100 to fix it? Aw, your boyfriend couldn't come over to visit tonight? GUESS WHAT MY BRAIN IS LEAKING OUT OF MY SKULL. I try to be patient but after five weeks of feeling like death warmed over I find my patience wearing very thin.
Haha, I'm glad I could make you laugh! That's the one thing that usually gets me through - my sense of humor. It's been kind of lacking lately since my symptoms got worse but I think now that I've gotten some good news the laughing may begin again!
Stephanie Richardson said:
You just made me laugh out loud, something that's pretty rare these days...I just love the MY BRAIN IS LEAKING OUT OF MY SKULL! My neurosurgeon (1st one) said "Well, basically your brain is just too big for your head" which friends and family found humorous, I'm a CFO so people say it goes with the job!
7thhousedoula said:
I'm glad to hear from you. It's helpful hearing what people are experiencing so if I get to that point I know what I can expect...
I have the same problem with people comparing their situations to mine. My room mate especially - after my first trip to the urgent care, he started moaning about how much his stomach hurts and how he should go to urgent care, too. Then he said, "I have XYZ symptom, what about you?" My mother is just as bad - she called and asked how I was doing, but immediately after said, "Oh, I had to take the day off because I'm SO dizzy. It's probably worse than your dizziness."
Pretty sure this isn't a competition! It doesn't matter who is in more pain! I am finding myself frustrated when people complain about their problems to me as well. Oh, darn, you had to work some overtime this week? Gee, your crappy car finally broke down (totally not unexpected) and you didn't save up the $100 to fix it? Aw, your boyfriend couldn't come over to visit tonight? GUESS WHAT MY BRAIN IS LEAKING OUT OF MY SKULL. I try to be patient but after five weeks of feeling like death warmed over I find my patience wearing very thin.