Hi! Does anyone have any suggestions or lists of things to bring to the Hospital? Any pillow suggestions? Very much appreciate any ideas!
Thanks!
Julie
Thanks so much Jenn! I will definitely have to check out Bed Bath and Beyond. I took a look at your list and those suggestions sound awesome and so glad that you had immediate relief! Are you still symptom free? I did also download the Dose Organizer app for iphone. Sounds like a great app. The nurse at Dr Heffez's office said that in the beginning (not sure if just the first day) he will have me lay flat (on the back of my head) for 15-20 minutes about every 2 hours and I honestly can't imagine laying on the incision at that point.
Thanks again!!!
Julie
In addition... he means laying flat on the back of my head with no pillow. Yikes! Lol
I am a patient of Dr. Heffez, no pillow! Hospital 5 days, no pillow! When I got home, no pillow!. Actually after surgery, it is easy and comfortable to lay on back with no pillow. In my case, neck and head hurt extremely bad. My head hurt with any movement. The incision really wasn't even pain factor. Mechanical hospital beds are nice so you sit up and still have you head resting back on bed. Before I had surgery, I would sleep with 2 fat pillows so I was almost sitting up and sleeping, otherwise I would wake in morning with terrible neck pains and headaches. No pillow was terrifying. 7 months after surgery, it is still comfortable for me without pillow. No worries!! :)
Wow!!! That's really good to know. I wouldn't have thought. It has been 2 1/2 years of not being able to lay on the back of my head because it makes me spin. So looking forward to being able to do that. Thank you so much for the comforting words! How long were you in ICU?
I fell in love with my neck pillow! Have one at home ready for all Tv watching you’ll be doing. Also we kept about 5 ice bags in the fridge, NOT freezers! That felt good on the aching head!
What kind of a neck pillow did you go with? Ice bags in the fridge sound better than ones in the freezer. Brrrrrr
Funny as someone got me the made for Tv one that twists and such. Its a blue circle and the cushion was perfect. Still use it at times!!! Yes learned quickly the frozen ice bags was too much!
That's great that it works well for you! My mom got one of those for me after my fusion surgery and I didn't do real well with it. Not sure though how it might feel after this. I do have a Sobakawa Cloud pillow and I absolutely love it. The microbeads allow for the pillow to form just right and it's got a section in the middle that helps form to the head. I'm not so sure how it will work after surgery though. I have a smaller one but I saw on TV the other night that they come in regular full size too.
Hi Jenn! Is this the pillow you were talking about?
Brookstone BioSense Memory Foam Shoulder Pillow with Better Than Down® Cover
JennRN said:
1. Find a pillow that has some softness, but also support. Which usually translates into a more expensive pillow. Bed bath and beyond has a pillow by Brookstone that has alternative down on the outside and more firm on the inside and not too pricey. Make sure to get a pillow protector and/or dark pillow case because you may get some drainage on it.
2. Bring a comfy blanky that you curl up on the couch with. It is surprising how much that makes you feel better.
I made a list on here a while ago called "tips and tricks that worked for me". I think people found it helpful. GOOD LUCK! Make sure to move your neck post op too...it is the last thing you feel like doing, but if you don't it becomes a vicious cycle.
Thanks!!! Sounds interesting. I am going to get check it out!
JennRN said:
Yes, this is the one that I got!
Julie P said:Hi Jenn! Is this the pillow you were talking about?
Brookstone BioSense Memory Foam Shoulder Pillow with Better Than Down® Cover
JennRN said:1. Find a pillow that has some softness, but also support. Which usually translates into a more expensive pillow. Bed bath and beyond has a pillow by Brookstone that has alternative down on the outside and more firm on the inside and not too pricey. Make sure to get a pillow protector and/or dark pillow case because you may get some drainage on it.
2. Bring a comfy blanky that you curl up on the couch with. It is surprising how much that makes you feel better.
I made a list on here a while ago called "tips and tricks that worked for me". I think people found it helpful. GOOD LUCK! Make sure to move your neck post op too...it is the last thing you feel like doing, but if you don't it becomes a vicious cycle.
Hi Jenn! I bought the Brookstone pillow and have been using it for the last couple nights and it's really nice! Because I am a side sleeper, I have been searching for the right pillow since my fusion surgery 2 1/2 years ago and have gone through several. I have not been able to sleep on the back of my head/neck since. I became sympomatic immediately afterwards and was diagnosed after. Dr Heffez said that the doctor who did my surgery probably had my head tilted back too far and that caused it to become symptomatic. When I lay on the back of my head, I spin and the pressure gets bad and then the pulsatile tinnitus and headache comes. So far I think this pillow is the "bees knees"! Not sure how it will work after surgery but hoping for the best. One of the members here that had the surgery by Dr Heffez said that there was no using a pillow in the hospital, and Dr Heffez's nurse told me too that at least 15-20 minutes out of every 2 hours will be flat on my back on the back of my head, which after this long I just simply can't imagine. :-)
Julie P said:
Thanks!!! Sounds interesting. I am going to get check it out!
JennRN said:Yes, this is the one that I got!
Julie P said:Hi Jenn! Is this the pillow you were talking about?
Brookstone BioSense Memory Foam Shoulder Pillow with Better Than Down® Cover
JennRN said:1. Find a pillow that has some softness, but also support. Which usually translates into a more expensive pillow. Bed bath and beyond has a pillow by Brookstone that has alternative down on the outside and more firm on the inside and not too pricey. Make sure to get a pillow protector and/or dark pillow case because you may get some drainage on it.
2. Bring a comfy blanky that you curl up on the couch with. It is surprising how much that makes you feel better.
I made a list on here a while ago called "tips and tricks that worked for me". I think people found it helpful. GOOD LUCK! Make sure to move your neck post op too...it is the last thing you feel like doing, but if you don't it becomes a vicious cycle.
Wow! Your surgery made you symptomatic too! I too have insomnia. I've had it for a long time though. That would be really nice if the surgery would help with that too. The anxiety the night before surgery is just going to be too much that i may not even bother trying LOL. I'm soooo glad that you are mainly symptom free! I am definitely trying to keep a positive attitude. Just looking forward to getting my life back. At least as much as I can. Hope that you recover from the flu soon and that your CINE turns out well. Good luck! Keep me posted as well! Thanks!
JennRN said:
That's good to hear! I'm glad it is working and hopefully it will work after surgery as well. I didn't have any restrictions with movement, but eventually they will let you use one! I'm a side sleeper too. Sleeping after surgery was one of the more challenging parts. I found I had to change positions often, but I also have insomnia which will hopefully go away with time. It's funny (not haha funny, but ironic) that a surgery caused your symptoms. I had shoulder surgery in February and we think it was the intubation from that which made me symptomatic. Actually, I never laid flat, but laying on the incision itself really wasn't that bad. You will do great! Keep a positive attitude and just think it is the beginning of the rest of your life :) I'm still relatively without symptoms. I get occasional headaches, but nothing like before. My post op CINE is on the 30th. It was supposed to be this past Thursday, but I had/have the flu so had to cancel. Keep me posted and please let me know if you have any questions :)
Jenn
Julie P said:Hi Jenn! I bought the Brookstone pillow and have been using it for the last couple nights and it's really nice! Because I am a side sleeper, I have been searching for the right pillow since my fusion surgery 2 1/2 years ago and have gone through several. I have not been able to sleep on the back of my head/neck since. I became sympomatic immediately afterwards and was diagnosed after. Dr Heffez said that the doctor who did my surgery probably had my head tilted back too far and that caused it to become symptomatic. When I lay on the back of my head, I spin and the pressure gets bad and then the pulsatile tinnitus and headache comes. So far I think this pillow is the "bees knees"! Not sure how it will work after surgery but hoping for the best. One of the members here that had the surgery by Dr Heffez said that there was no using a pillow in the hospital, and Dr Heffez's nurse told me too that at least 15-20 minutes out of every 2 hours will be flat on my back on the back of my head, which after this long I just simply can't imagine. :-)
Julie P said:Thanks!!! Sounds interesting. I am going to get check it out!
JennRN said:Yes, this is the one that I got!
Julie P said:Hi Jenn! Is this the pillow you were talking about?
Brookstone BioSense Memory Foam Shoulder Pillow with Better Than Down® Cover
JennRN said:1. Find a pillow that has some softness, but also support. Which usually translates into a more expensive pillow. Bed bath and beyond has a pillow by Brookstone that has alternative down on the outside and more firm on the inside and not too pricey. Make sure to get a pillow protector and/or dark pillow case because you may get some drainage on it.
2. Bring a comfy blanky that you curl up on the couch with. It is surprising how much that makes you feel better.
I made a list on here a while ago called "tips and tricks that worked for me". I think people found it helpful. GOOD LUCK! Make sure to move your neck post op too...it is the last thing you feel like doing, but if you don't it becomes a vicious cycle.
I went out and got headphones that swivel so that they can lay flat on your chest with the speakers up. The constant beeping of some of those machines can be obnoxious, and music will help drown them out, but your head may not want to have anything on it or around it. That's where the headphones come in. You can lay them wherever you want (around the back of my neck for me, the bandages from surgery made a nice padding so I didn't even notice them there.) Also make a good relaxing playlist for your music device. I used the same mix I use for MRIs (makes it easier to go to sleep, and I don't get as claustrophobic.)
I only stayed in the ICU for 2 days after decompression, then another 2 days in the regular rooms. I got out of bed 4 hours after waking up from the surgery. If all goes well it shouldn't be too debilitating, As far as getting 100% better post-op, you can only hope. I saw a lot of improvement from the decompression, but the cervical syrinx (the biggest of 3) did not drain and all of the problems came back within 5 years (some even worse.) Hopefully not too much damage has been done to your nervous system already, and you will see a full recovery.
Good luck and don't stress out too much about it. It's nowhere near as bad as I convinced myself it would be ;)
Hi Dylan! That sounds like a really great idea! I'll have to look into that. So many wonderful ideas on this site and so many caring people who want to help. I have found some really nice SLEEP apps for iphone as well with ocean waves and soft relaxing music. Never thought about doing that for MRI's. I usually get sedated because I too get claustrophobic. I'm so glad that you had improvement after surgery! But if the syrinx didn't drain and your symptoms are back, and worse, what are they doing for you now?
Dylan said:
I went out and got headphones that swivel so that they can lay flat on your chest with the speakers up. The constant beeping of some of those machines can be obnoxious, and music will help drown them out, but your head may not want to have anything on it or around it. That's where the headphones come in. You can lay them wherever you want (around the back of my neck for me, the bandages from surgery made a nice padding so I didn't even notice them there.) Also make a good relaxing playlist for your music device. I used the same mix I use for MRIs (makes it easier to go to sleep, and I don't get as claustrophobic.)
I only stayed in the ICU for 2 days after decompression, then another 2 days in the regular rooms. I got out of bed 4 hours after waking up from the surgery. If all goes well it shouldn't be too debilitating, As far as getting 100% better post-op, you can only hope. I saw a lot of improvement from the decompression, but the cervical syrinx (the biggest of 3) did not drain and all of the problems came back within 5 years (some even worse.) Hopefully not too much damage has been done to your nervous system already, and you will see a full recovery.
Good luck and don't stress out too much about it. It's nowhere near as bad as I convinced myself it would be ;)
That is so cool that you were so calm! I hope that I find that inner peace. I take Ambien and Phenergan at night to sleep. Phenergan is my friend because of the nausea that comes with the constant whooshing. And valium as needed because it's a vestibular supressant. I can't imagine that I will be able to take any of those the night before surgery. My surgery is January 7th and that's such a long time to think about it and get more and more nervous. I'm hoping though with the holidays and everything that the time will fly by (cross the fingers lol).
Because I have such severe vestibular issues (vertigo, disequilibrium, etc) my last neurologist had me try vestibular rehabilitation, which I did locally and it did nothing, which it doesn't for central issues. But he didn't believe it was Chiari related, even though we had ENT testing indicating a central pathology. When I followed up with him he demanded that I have it done by his facility, which was over 2 hours away and it was 3 days a week. Well, I don't drive because of it and we were coming into Octobler and winter was right around the corner. I told him that it really wasn't an option due to the distance and transportation issues and having to have someone take me all the time. I told him that I checked into it and was told if I missed one session, I would be out of the program because it's so booked. He kept saying "you have to! You have to find a way!" He said "You have to take control of your treatment!" So the moral of the story is... I found Dr Heffez and I am TAKING CONTROL of my treatment... and my life! :)
JennRN said:
From what my surgeon said as well as what I have read, insomnia is definitely a symptom of Chiari. However, it is a symptom that takes a long time to go away. The nice thing is that you can continue to see symptoms disappear for a long period of time! As far as the night before surgery, I actually did very well and got some sleep. Don't get me wrong, I had some major fear about the surgery, and being a nurse, I knew too much to be dangerous. However, the day/night before, I found this weird peace about everything. Everyone I talked to that day (which felt like everyone I knew) told me how they couldn't believe how calm I was. I freak out about EVERYTHING and make worrying a job. I kept telling myself that I was able to make this decision and to take this step to get my life back. So many people with Chiari use that phrase and it is so true. I wanted to take control of what happens in my life and wanted the ability to enjoy it again.
The morning of surgery, I was nervous, but still did pretty well. I was there talking with my friends and family like I wasn't getting ready to have brain surgery. My staff was AMAZING. I am 29 but still have a baby blanket that I sleep with. Anesthesia asked if I would feel more comfortable to take it back to the OR with me. I told them yes, but if they lost it they would have to deal with me when I woke up...haha, they got the hint. The only person I couldn't talk to or see on the morning of surgery was my then 14 month old nephew...who is the pride and joy of my life. Apparently my brother was as nervous as I was and wanted to get to the hospital fast. But I told them that if I had to give Rylan a kiss goodbye going into the OR, I would lose it. I saw him afterwards, he reached for me (then cried because I couldn't hold him). I did finally start crying when I got into the OR, but once again the staff was amazing. At one point I remember telling them to just push the drugs and go to sleep. Waking up in the recovery room will go down as one of the best moments of my life. The first words out of my mouth were "I didn't die" then "I feel like me again." Granted I had pain, but the constant fog was gone. I hope that you are able to have as positive of an experience as possible. If you want someone to talk to the night before (or anytime) I am more than happy to send you my phone number in a personal message. Remember that you are not alone in this journey. And also remember that it is a journey. It takes time. You have to be patient with yourself and your body. I found that the hardest part. I wanted to do things that my body wasn't quite ready to do. I hope that this helps and doesn't make you more anxious.
Honestly I've been using the Sobikawa cloud pillow before and after surgery and I love it. It conforms perfect even when I'm laying flat on the incision. You may end up not needing another pillow!
Hi Anglyn! I have a small Sobikawa pillow and didn't realize until recently that they made full/queen/king size. I checked at Bed Bath and Beyond which is where I got the one I have but they don't carry the larger ones. I think I'm going to order one online. I absolutely love mine too!
Anglyn said:
Honestly I've been using the Sobikawa cloud pillow before and after surgery and I love it. It conforms perfect even when I'm laying flat on the incision. You may end up not needing another pillow!
Hi Anglyn!
I did order the Sobakawa Cloud pillow in a queen/king and I love it even better than the small one that I have! But... now I have to share it with my cats. Lol. They love it too.
Anglyn said:
Honestly I've been using the Sobikawa cloud pillow before and after surgery and I love it. It conforms perfect even when I'm laying flat on the incision. You may end up not needing another pillow!
Funny you say that about the cat. In my house the dog steals the pillow the second I get up! Me and my husband like to sneak into the bedroom to see what creative position Cocoa is sleeping in!