Hi...first of all congrats on ur surgery.dont get me wrong,but i am honestly shocked about ur aftercare.how do they discharge u sooo quick.there was no way for me having gone to the toilet or doing a little step after surgery not to talk about urinating.u were in so much danger...what if u just would have fallen???!!! And of course u cannot control urself puking all over.reason enough to observe u few more days.
The nauseas and stiffness is normal...u r on very early stages of healing and this op is a very big deal for u and ur body.nervous system has to adopt to the new space and that can end up in strange signals...and symptoms.take it very easy...u will have to rest a lot...ur body needs to regain a lot of strength...keep us posted...good luck
WOW, I was in the hospital for 5 days. I had a catheter until day 4, was on a pain pump for those days also. My NS had me on bedrest for the first 3 days, lying flat as much as possible to prevent headache and CSF leak. I did take a shower on day 5 prior to discharge. I saw my NS the next week for staple removal. After discharge, I was told to lie flat 30 minutes for every 2 hours up for 2 weeks. I was sent home with Vicodin, muscle relaxants and antinausea meds.(Reglan). I had a follow-up at 6 weeks with an MRI with contrast so he could show me the changes that he made. Try ice on your neck and ask for more pain meds as well as antinausea pills when you return for your follow-up. Make sure your resting a lot. I am flabbergasted at the differences in our experiences. This is a major surgery, not a one day in the hospital type, I hope you feel better soon.
Hi and welcome back.
Thanks for the update and I too am surprised at ur post op care...and will leave it at that.
As for how u feel, it sounds positional, so it may be a leak....lay flat and drink plenty of water, see if this helps...usually 4 to 5 days is what it should take for this to correct it self if it is in fact a leak....but it sounds like it may be since u feel worse when u r upright.
Do u know what type of patch was used? if a patch was used?
How far do u live from this NS and do u have a NL close to home u can
call ?
He used a bovine patch and that concerns me because I have EDS. (Not one person we talked to in the hospital, from the anesthetics to the nurses had ever heard of EDS, but my NS knows it.)
They woke me up immediately post-op to check my mental functions and then MADE me get up and walk around before they would take me to my room. I was VERY unsteady. They then came into my room, no exaggeration, every 20 minutes for the next 24 hours and made me walk around. I had to walk up and down the hallway, up stairs, etc. I actually snapped at one nurse at one point who kept insisting that I needed to "get up and move around." I was finally like, "Look, lady, I have been on my FEET more than I have been in bed. I could not possibly move around anymore than I already have."
I don't believe there was ANY communication between the NS and the nurses, either, because my NS distinctly stood there and told me "no stairs until I got home" and a few minutes later the nurse came in and said, "Well, before he releases you you'll want to do some stairs first. He'll make you!"
I live 3 hours from the NS. I don't have NL yet. I tried to get my PCP to line one up before I went into surgery but she's not quite on the ball yet. I do have a very good hospital close by so that if there is an emergency I could get there quickly and they can talk to my NS. If not, I can hope back on the interstate and move on.
We are a little concerned about the lack of importance it seems that they have placed on this surgery-as though I was just having a bone set or something. I spent more time in the hospital when I had my gallbladder removed.
I do hope it's not a leak. I am going to try being as flat as possible for awhile. They were making me feel so guilty about not getting up and moving around that I haven't really rested much.
The good thing is that my neck mobility is great. I guess that's something anyway! :-)
Whaaaaaaaaaaat???? They made u walk straight after surgery and woke u up every 20min!!!! I could not even get up till day 3 and was happy to be able to walk 5min...sorry what u have been thru and not being a doctor or nurse...i tell u thats definetly not the way after major brain surgery it is supposed to be.ry to get local ns just in case u have a post op issue...oh man i am sooo sorry of how u ve been treated.
I am stunned!
I was in ICU for 2 days and I was not to move out of the bed until they took some of the tubes out....I was tied to the bed with so much coming in and out of me....I was in fear of moving I would pull something out....I was moved to a reg room via a wheel chair....and I was in a total of 5 days.
My NS had a PT come see me and I did have to do stairs b4 I left, and they showed me how to use a walker as that is what I was to use at home, do u have a walker? Did u use one in the hospital?
Again- stunned.....
Now that u r home, what r u doing on a daily basis?
I'm also shocked at your treatment (but also very surprised at Marybz's). I know that they DO make you get up and move; this is really for your own good. I whined about it too; adults are prone to clots post-op..
They also want you to urinate on your own ASAP.
I also think that they're taught not to baby patients, to prevent potential reliance on drug dependency, and to return to the real world as best they can.
That being said, I'm just astounded by your early release. I hope you recover fully soon.
I wanted to mention since u brought up the clots, that I had these lovely things on my legs that moved and were quite strange but were there to avoid a clot in my legs, and I got an injection in my stomach for it as well...ouch....every day I was in ICU....2.5 so 3 shots.... once the tubes were out I was up using the toilet in the room.....and was then moved and was up walking using a walker....I do not hear to many mention that....hmmmm
Mayb cuz I am old huh?...lol...nah....it is funny how u recall certain things only after someone else says something tho....I forgot about that dang injections into my stomach,.I hated them, especially the last one as I was getting off the stronger meds then...really felt that one.
I had the compression devices on my legs to prevent clots on all the time except for 1 hour for hygiene. My NS does about 3 CM surgeries a week and has done in the hundreds over his career. He was very adamant about the 3 day bedrest to prevent CSF leaks. Thats why the foley stayed in to prevent me from getting up. He actually raised his voice at me "lay down flat" when I told him I had a headache, the head of my bed was up just a little. I actually had two surgeries done at once, laminoplasty(big OOch to that one!). He keeps people for a week because a lot of people come from far distances. What he lacks in bedside manner, he makes up for with his knowledge and skill. He's blessed with hands that heal. God Bless him!
Oh, yeah. The nurses were great as they also had a lot of knowledge on post-op of the CM person. He keeps his CM people on the same unit with the same group of nursing staff. When the meds made me puke, they got on the phone and found something that i could tolerate. As far as discharge meds go. I'm thankful for the pain management. This surgery hurts. I still need 1/2 vicodin pill in the evening when my neck gets sore from holding up my big head. I tried to be the martyr but I'm sucking that one up. Pain pills are for people in pain.
i believe my nurses had little education on chiari and the decompression. i did a lot of educating while i was there and NONE of them had heard of eds.
i live 3 hours from my hosp thereabouts but will go to my local one with a good ns dept if there is an emergency just in case. i called the ns today and they told me that i probably have a small leak. told me to keep flat and drin kfuids and hopefully it will clear on its own in 4-5 days.
i am also stunned they released me so quickly. and had me up moving right away. literally guys, it was less than an hour post-op. i wasn't even in the room yet.
i am on steroids so hopefully that will help with the swelling and stuff.
at hope my two elderly aunts are here to help with my kids for a few days as is my mother. my husband is taking rund the clock care of me. so i am well taken care of.
thanks for the messages. i appreciate the help. hurts to do much but wanted to chck in with you lovely people. :-)
This is so unacceptable. I am flabbergasted. My surgery was on Tuesday and I was in bed until Thursday. I only got out of bed enough to sit in the chair until they wheeled me from ICU to the regular ward. I began walking WITH ASSISTANCE that night. I wasn't even allowed to get off the toilet by myself. I also had the drain in my head ( I had an ETV two days prior to my decompression). You really are not supposed to move around so much ( from what I understand) because you can CAUSE a leak, by all the movement.
I feel TERRIBLE for the way you were treated. I would file a complaint, seriously. I'm so sorry. :-(
i wanted to get up and move around but i really feel that the amount of movement they made me do was unacceptable. please don't think i am xaggerating when i say it was every 20 minutes. i worry about clots too but i had the leg pumps on (god i love those!) and i took little strolls around my room. the nurse was still getting onto me about no movig enough. yet i was only inthe hspital for a day and still doing all that! i hadn't had time to get "lazy" yet. :-)
i am very surprised too. i will deal though and we;ll get through this together!
I'm with sweetjen. File a complaint. That sort of treatment is completely unacceptable - not to mention dangerous!
I'm glad to hear you're doing well, and I hope the rest of your recovery goes smoothly.
i forgot to mention that right before i checked out they gave me lunch and served my sandwich on molded bread. i am not joking. i took a picture of it. ou can see it on my profile. :-) good thing i stopped eating before i ate too much. should i fle complaint with th hospital advocacy about everything? this seems to be a nurse/hospital problem and not a ns problem since he basically just uses the hospitl for priveleges and they weren't exactly HIS nurses.
I'm so sorry your experience was like that. I'm glad that you have gotten sound advice now. Rest is what you need and the fluids. I would file a complaint. The NS should be giving better instructions to the nurses in care of his patients. Take care and hope you have better days ahead.
Moldy bread..deff report that!! That is like the cherry on top of all of it...I am sorry but nothing is right in ur care.
If in laying flat and drinking ur water u still r having issues, try some caffeine...it can help...just not too much.
Only get up to go to the rest room.....when I had a leak, I even ate laying flat I just rolled on to my side....but the more u stay flat and rest and keep hydrated the better chance of the leak sealing on it's own.
I do not understand them keeping u moving when u do need to keep still for a time post op to allow things to heal....my leak I had was the result of a student nurse pulling me to a sitting position when I was sleeping , she was trying to waken me to put me on a bed pan....I realized and laid back down and asked if the time had passed for me to be up as I was instructed to stay flat, all she wanted was me on the dang bed pan and could care less....so I know it is important for the patient to stay flat....and for how soon u were up, I figured it had to be a leak.....
Hang in there....and if in 4 to 5 days u feel the same ask about a blood patch.....
I to was out from icu one night then home. Doesnt make sense. My family says I wanted to go home. But that doesnt mean theu should have let me. Ever since I got home the day after surgery, ive been takin care of myself and 9 months later now o still feel like crap. Take it easy.
I keep reading about laying flat. I guess I couldn't because of my drain from the ETV. I still can't lay flat without getting woozy!
They definitely came in like every 60 minutes or so the first few nights to do all the nuero tests: follow the light, touch your finger to your nose, squeeze my fingers, hold your hands out like you are holding a pizza box. What's your name, your birthday, where are you....push and pull with your feet. Oh those were the days... I would finally fall asleep around 3 am ( after they took blood) and feel like I was finally really resting, when the docs would come in for rounds.
I didn't finish my reply last night. My computer was dying and I didn't have my charger with me. The bread thing is terrible. I think at some point you will get a survey to fill out about the hospital. make sure you complete it.
Not all of us can lay completely flat.....but laying down even on an incline can be helpful especially if being upright is when u develop more symptoms.
When I had a CSF leak...many yrs b4 my chiari dx, this is what I was told to do...how ever post op from my decompression surgery, I could not lay flat, but being in a recliner was helpful.....
We r all different and issues with position actually indicate what issue u may be having,....so do make sure u report these to ur Dr.
It is interesting to see the differences in how we were cared for in the hospital.....I know I added the earplugs as the night staff at the hospital I was at went about things like it were the middle of the day in a downtown shopping district...not a hospital....they were bowling down the hallway with boxes of supplies, yelling to one another...and wanted my door open...I said no way, and kept closing it....I have to have my sleep....ugh....
I guess they r doing their job so long they forget they r care givers too, they just see it as a job and do not seem to care about the other aspect...us!!!
they gave me a patient diary while i was in the hospital and my husband and mom filled it when i could't. they wrote down all the times, what they had me do, etc. to show how completely unrealsitic i think the doctors were about my recovery here is the breakdown.
i hecked into into th hospital at 5:30 am. surgery was at 7:30. they called my husband at 12:00 pm and he told him he could come back. at 12:25 pm they had me get up and walk to the bathroom. at 12:45 pm they had me do it again. and then again at 1:17.
at 2:00 pm they moved me to a room. they released me from the hospital at 2:00 pm the following day. that means that i was in the hospital for a total of 29 hours.
obviously, some of that was pre-op, some post-op and some surgery. so we'll take about 8 hours of that out.
in 21 hours, they checked my vitals 26 times, approximately every 35 minutes.
IN ADDITION, they asked me to get up and walk down the hallway a total of 19 times. that was almost once per hour. each time they had me walk it took me anywhere from 15-25 minutes.
my husband and mom recorded that the longest they allowed me to lie flat in my bed was during one stretch in the middle of the night when they let me keep still for a total of 33 minutes. other than that, they made me get up.
i took 2 showers, unattended, while in the hospital. i sat on the little chair in the shower. the nurse told me i had to do it but didn't offer to stay with me.
for the first shift, my pain meds, muscle relaxers, steroids, and anti-nausea were given me to on a schedule, every 4 hours. after that, it was when they thought was "as needed." during some of the times i would go for as long as 7 hours without any pain or nausea control.
due to the vomiting i lost a total of 11 pounds during my 19 hours in the hospital. i have since lost more.
this is my 4th surgery this year. i understand all about checking vitals and the importantance of moving and preventing clots, but keep in mind that was in the hospital for less than 1 ful day when you take out surgery time and during that time they had me walking almost, what, 4 hours of that? that seems way excessive.
in hinsight, realeasing m early might not have been a bad idea. at least here at home my husband can put me on a regular medication schedule and i can rest. i am still walking of course and doing my neck exercises but i can take things much slower.
and our bread isn't molded. :-)
i am going to send this documentation to the patient advocacy and complain to my surgeon.
Oh yeah, it was bad at night. They would always knock on the door. My ears were so sensitive to sound ( for about 6 weeks). I finally had them put a sign on the door that said, "don't knock, just come in". I mean, they had to come in. I couldn't get out of bed without help....hahah, what on earth would I be doing that would require a knock? Hahaha...
So sorry to hear wha you had to endure. Such a sad story and I'm shocked that you went home so soon. I didn't get out of bed for 3 days afer my 1st surgery. I would also complain about the mold on the bread this hole story is just crazy. I hope you have better results when going to the NS next week. I was totally opposite than Selma NS. I had 2 leaks and each time they had me on a 45 degree incline on the bed to keep the fluid from forming in the back of my head, but my leak was the size of a water balloon. It's a crazy ride we have to go on. Hope yours goes more smoother.
Linda :)
i went to my pcp today. they gave me stuff for nausea and vomiting. they also noticed that the inside of my throat and mouth is covered in thrust. they'd never seen it that with with an adult before so they called over the pediatrician to look at it and confirm it. i felt gritty and my mouth was sore in the hosital but nobody would look at it. so it's been like this for awhile. they gave me nystatin. now the baby and i share a medication. :-)
really not feeling the great care i got at the hospital.