Hopefully I can ease some of the stress out of me with people who can sympathize and emphasize. I have been dealing with this for over 2 yrs. I found out I had a chiari in June of this year and then was rear ended end of July and since then things have gotten worse! My head feels like it’s going to explode numerous times a day. I no longer can go running either. Laughing hurts too! Any type of stress or strain hurts…as you all probably know. I was scheduled for surgery with a neurosurgeon, but ended up canceling with him and have decided to go to dr. Oro.
For those of you who have had the surgery, what are things you noticed that hurts to do? I’ve heard chewing hurts. Is this true?
I want to know because I’ve had many surgeries before. The one that really stood out to me was my left wrist being operated on and was casted almost to my shoulder to my hand. I couldn’t do so many things, like doing up my bra, flossing with two hands…things you don’t think about.
Anyways, I’m just curios. I want to be prepared. Also, has anyone purchased a chiari pillow? Was/is it worth it? Can you lay comfortably on your back after the surgery?
Dr Oro did my decompression 09/20/11. The only restrictions I have are no contact sports or roller coasters. I was really bummed on the roller coasters because I am an addict but I won't risk it.
My recovery was extremely smooth. My eyesight was back to normal within 12 hours of surgery. I could navigate stairs before I left the hospital. I didn't need any PT. I was able to most things for myself after surgery. We had family and friends that brought food for about 4 weeks after surgery. Boy, did that help because I have a house full of girls.
I went on two vacations with my family this past summer and just made my first every girls trip to Las Vegas in October.
The only downside I have are more migraines than before surgery. I know they're migraines because migraine meds take care of them.
I do have a Chiari pillow and I love, love, love it. It is worth every penny I paid for it. In fact, I even packed in my suitcase and took it to Vegas with me. I didn't like it right after surgery.
Good luck with your decision. There are several of us on here that have went to Dr Oro so we can answer any of your questions.
LOL I actually have a dream to sky dive but I don't think it will ever happen. After the surgery everything hurts on your neck and head but it's temporary and it's healing pain. We Chiarians are tough and you will do great. You have chosen a fantastic doctor who will take care of you and guide you through the entire process. Then you have the rest of your life to look forward to. We are all here for you too.
Jen is an RN who recently had surgery and she put together a great list of tips and tricks.....
Thanks for all your input. This helps! I am disappointed about the roller coasters! I love them. Haven’t been on one since I started having symptoms though. It hurts for me to even go on a swing at the park. Wouldn’t you be able to go on roller coasters once your neck healed? We are planning a trip to Disneyland with my little girls next year. I/they will be sad if I can’t go on any rides.
I’m not a marathon runner, but I do enjoy exercising. It’s not as easy to exercise with a Chiari. Guess it’s a good excuse to say you can’t be one, since I have no desire to do that, but to all those who are, you rock!!
I’ll probably have more questions/concerns. If I’d I, I’ll ask. Thanks again everyone
I basically got the no contact sports and no roller coasters. Though I was told from a medical standpoint they don't really recommend normal people ride roller coasters due to lots of whiplash patients they get. lol. I was sad though because I love coasters. My husband offered to take me to Kings Island the day before surgery for one last ride but I was so nervous about the surgery I knew I wouldn't be able to relax and enjoy.
Right after surgery I found lying on my side most comfortable. I have a super cheap Sobikawa or whatever as seen on tv pillow and I love it. It makes my neck feel great. Now 3 weeks out I can lay directly on my back without soreness. My husband is a restless sleeper so he bought a body pillow to create a barrier between us so he won't knock me in the head by accident. I don't think it's necessary but I thought it was cute that he was so worried. lol. I also agree on the bra. It doesn't necessarily make things feel worse but unless I'm going out I just go without. No need for any added neck or shoulder strain. I was told not to bend down or lift over 5 lbs. after surgery for 4-6 weeks. I was able to put laundry in the wash but I'm short so I can't get it out and into the dryer without bending so I get help there. You may want to have some stool softener on hand. Anesthesia and pain meds can put that business to a halt. I found after almost a week I had to get Miralax. TMI but it's best to prepare for that. Honestly I had no issues walking unassisted or showering directly after. Just have someone on call in case you get lightheaded. If in doubt use caution! Get lots of rest...even if you feel good.
I drove my girls for Texas to Disneyland over Spring Break this year. We had a blast. I was OK with not riding anything because I never want to be at the point I was before surgery. I was just excited I have my freedom back and could go where I wanted without my health getting in the way.
Ditto, Beeba about your feet screaming at Disney.
I have to say I am a Mickey Mouse fanatic!
Diana
Hydro said:
Thanks for all your input. This helps! I am disappointed about the roller coasters! I love them. Haven't been on one since I started having symptoms though. It hurts for me to even go on a swing at the park. Wouldn't you be able to go on roller coasters once your neck healed? We are planning a trip to Disneyland with my little girls next year. I/they will be sad if I can't go on any rides.
I'm not a marathon runner, but I do enjoy exercising. It's not as easy to exercise with a Chiari. :) Guess it's a good excuse to say you can't be one, since I have no desire to do that, but to all those who are, you rock!!
I'll probably have more questions/concerns. If I'd I, I'll ask. Thanks again everyone
I had to re-read your first paragraph a couple times because I thought for a minute I wrote it! I also was diagnosed in June and in a car accident in July. I also had my surgery scheduled locally and than cancelled it to go with Dr. Oro. He performed my decompression surgery on October 1st - so I'm five weeks post op.
Other than the first couple of weeks things have been pretty smooth. I did not buy a Chiari pillow - I actually found the ones at the hospital were very soft and worked well for me. I'm not in a lot of pain but being in a car whether driving or being a passenger is kinda jarring for me and I ache during and after. But than again I only am five weeks post op.
I don't have any input on your questions exactly, but I just wanted to let you know that I had surgery w/ Oro on 10/23 and am still amazed at the care that I received. It was the most positive experience that I think you could have w/ what we all have to deal w/, and I miss them daily! Best wishes!
Everyone has gave you incredible advice. The only thing I can add is no scuba diving & no pool diving. I was a competitive diver & only tried once after CM surgery. It felt like my head exploded.
I really hope you do well. Let us know how you are doing,
My post op journey and resolution of my chiari symptoms have been INCREDIBLE since surgery. Unless,, of course, you read my recent, whining posts about my scalp pain. Even this unexpected nerves-gone-wild stuff is a small price to pay for feeling so much better, just some days it has gotten to me, and today was one of them.
Anyway.....you might be pleasantly surprised at how much post-surgical help and care you DON'T need. I bought a shower chair and used it twice and shouldn't have spent the money at all, but made sure someone was nearby or came in to check my incision and wash around it while I showered.
The main things I have done are to make sure I follow the essential rules: weight restrictions, and avoiding extending my head and looking up. I do NOT want to mess this surgery up by being stupid and thinking I am Hercules, so I have gone with my high energy while "obeying" the rules.
I just helped a friend unpack from a big move. My role was to sit at the kitchen table and unwrap kitchen stuff and lay them out on the table to be put away. It was a job I could do that was really needed, but it didn't cause strain. If the box was too deep and it was hard for me to dig to the bottom, I asked someone else to grab the items for me.
Just be smart, enjoy feeling better, respect Dr. Oro's team and your body, and take it slow. On days that I feel like a million bucks with my energy and clear head (fog is GONE), I actually picture my dura patch exploding off of it's stitches as a nice little motivation to take a chill pill and respect this godsend of a surgery! haha
Crap!! No scuba diving!! This was my life, scuba diving and roller coasters. That is what I went on trips for was those two things. We just bought BCD’s for me and my husband last year. I’m really depressed for the moment. I wish there was a cure for this
Ok, had a little cry with my husband on Skype last night (he’s out in Wisconsin working) and told him about things I can’t do. Feeling a little better today. If I can’t do some things and I’m going to have an over all better life, then I can deal with it and adapt! You all have given me great info and I thank you all for that. I am going to have to dig in and find out other things I enjoy doing to fill in the gaps of things that I won’t be able to do. I need to look at what I can do, instead of what I can’t.
I am on a cancellation list for dr. Oro. Chuck told me it’s usually 2 weeks that they schedule the surgery from the time you meet with Dr. Oro. Is that what has happened for all of you? I don’t want to be miserable for Christmas. I want to be able to enjoy Christmas with my kids, and not be in pain. I am scheduled for my 3 appts at the end of Nov. so here is hoping there is a cancellation, but so far that’s not happening.
Thanks again for all of your posts. This has been very helpful!
Guess it’s a good excuse to say you can’t be one, since I have no desire to do that, but to all those who are, you rock!!