Hi guys- Surgery was Wednesday so I think things are going great for me compared to lots of the stories. My one issue that is driving me nuts (obviously other than extreme head pain) is the pain down the back of my legs. I can't seem to figure out what helps them either, Sometimes it is standing, sitting or laying down. Just curious if anyone else had lots of leg discomfort after the surgery. I am still bouncing off the walls that I was only in the hospital for two nights!! My husband kept telling me I was crazy that I thought I could get home quick. I told them I wanted EVERY nausea med known to man kind :) I think it worked!!! Today is the first day I had the arm strength to put in my contacts, I am very impressed :) I tried yesterday and it was just too hard, Hubby had to take out the one that I got in. I was just frustrated, tired and cranky,.... I know that you all understand!
Last night was really bad (head pain) I think I just did a bit too much walking. My doctor told me that for surgery positioning, that my legs would be at a 90 degree angle with my feet in the air??? Anyone else know about body position?? Then they did a jaw block they said to keep me from biting the breathing tube closed because they tuck your chin close to your body. My arm is now green and black from the arterial line! I finally figured out that it is the only thing that I remember from my "semi-awake" time in the OR. I remember that line hurting when they put it in. Seems funny because although I know I was awake for a while in the OR, they told me so, the arterial line is the only memory that I have. I am hoping I don't have to do one of those again or at least for a long time.
Just writing random thoughts about my surgery.. probably boring to some but just things I remember. I liked the leg things that everyone seemed to complain about, I thought they were distracting from the head pain. Being cathed was terrible but I guess anyone that has had a catheder already knows that! They gave me crackers my first night.. yeah, real solid food maybe six hours after surgery. I think I was so lucky on the nausea side of things. I had the patch, the injections every time I got morphine and I was also given pills... I am so grateful for their extra help with this. The next morning they ordered up real breakfast for me :) Yup, I had eggs and english muffins and juice only 24 hours after my surgery. I can also mention that I have still (knock on wood) have not had a headache??? Did everyone get bad headaches after surgery??? I would be curious. I have some Chiari type pains with some movement or going to the bathroom but I am assuming that is because of the swelling. I thought I might end up with migraines because the chiari pains used to cause them for me but I have not had anything I would call a real headache. Head pain and can't move my neck but that was to be expected. Overall I think so far I have a really successful surgery story, I hope it continues this way. I know that many of us feel very unlucky in the medical department so it was very cool to have something go right! On my second morning when they came around for rounds, the neurosurgeon said that the team could not believe how well I had done and it was not what they expected of a chiari patient. He told me they felt that although I was at only 2 days out, they felt I was at the point they would expect to see after a WEEK... he had expected me to be staying at least a couple more days but the team felt that there was no reason for me to stay... I was home less than 48 hours after being wheeled out of the OR!!! Even the nursing staff in the brain unit told me that they saw they were getting a chiari patient and that they were dreading me :) That kind of made me laugh. I think being so well prepared with so much information from this site helped me to accomplish all of this, I knew what to expect and what to ask for. I guess I just want to say thanks again for the last 8 months of answering questions! I think the information we get here is just so valuable in fighting our fight!!!
LMAO...sorry that is the first time I heard about the leg position...goodness I am glad I didn't have that imagine of myself going in...lol....
The HA"s were gone right afterward for me too, but we r still on meds...and we have other pains like from the arterial line I was quite bruised as well from that...and the legs got to me as well, but they had these inflatable leg warmers that would inflate and deflate to help avoid blood clots....u may want to mention to ur dr if the pain persists or gets worse of course.
I am curious about the nurses dreading a chiari patient...did they say y?
They said that the Chiari patients tend to have a difficult time with recovery because of nausea and headaches. It just sounded like it can be very difficult for Chiari people that start to puke!
Yeah,I laughed about positioning too,sounds a bit crazy. I have a bad knee so I asked if they would prop that one leg so that it was bent slightly and that was when they laughed and said I did not have to worry about the leg being straight. It has to be quite the picture once we are in the surgical position. They told my husband it takes nearly an hour just to get us in position for surgery.
well...I was vomiting while in ICU but, it did not affect my head....it was weird in that I was not heaving....just felt it was coming up...almost on it 's own...lol...kinda funny but that could be y it didn't make my head hurt while I was sick....it was also from the morphine...once I got off it I was fine.
an hour!!! WoW....I did not get that tidbit either...lol......could b y it took so long for mine...lol....my body probably gave them a hard time...hahaha.....
After I get past the mental picture of the positioning (LOL) I am actually very confused....
Weren't your face down during surgery?? And if so, I can't see how you could have been like that!! Maybe I misunderstood?
For me, I didn't have to go through any of those experiences...they put me out right away in the OR even b4 the catheter!! The told me that it was b/c they would be putting me face down for the surgery and it was much more pleasant for me if I was out. So all I remember is everything swirling around...and I was out...and then when I woke up I had all these things attached to me!!
I had horrible headaches after surgery....the second night the headache was so bad that I thought I was going to die... I had problems with bad headaches from the surgery well into 2 months post op. I still believe a lot of that was due to not being able to take pain meds...I was either allergic or overly sensitive to almost everything...after I had a reaction to the pain med right after surgery, they were too nervous to give me much else. I was on T3's only hours after the surgery, with nothing else.
I'm so glad that we were able to help you here :) Just remember to take it slow, no matter how good you feel. I hope to hear that you will continue to see improvements!!
Good Morning- One week out from my surgery today :) It is my first day home alone...hubby made sure I was all set and I do have a friend bringing me lunch around noon for a quick visit. I think I am looking forward to my quiet day and no one hovering over me :) I really feel great, Sounds kind of silly but I went to the bathroom today without head pain, I am hoping this is a good sign that things are working better. I still have no headaches and am starting to get some movement of my neck, limited but moving. Last night I only took ibuprofin... it was not the best but the pain meds make it hard for me to pee so I have to take breaks from them so that I don't end up back in the hospital for a cath.
Carolyn- Sorry if my description of position was confusing. Yes, I was face down and my legs were bent at the knees, feet in the air (some type of braces they said holding them. It just sounds like we must look pretty silly. I think the jaw block must have pinched my tongue or something because I am finally getting the feeling back in the side of my tongue. They said they use a block so that you can't bite the breathing tube. I am so happy we are not awake when they contort us!! I am so happy I don't get headaches like you describe, they sound so horrible!!! Sorry to hear you could only take t3. They stepped me down pretty quickly but the first day the morphine was a life saver. The second day I went to Oxycodone and that is what they sent me home with. I take just 5 mg to take the edge off when things are really hurting. I am pretty sure T3 would not have taken the edge off as well as morphine!! i am sure I got to go home so quickly because all meds worked. Everyone could not believe I was home in 48 hours.
Selma- Sorry to hear you got to vomit! Sounds like lots of people do not do well with the morphine. I was very afraid of it, I don't drink, smoke or do drugs and most meds give me terrible side effects. I consider myself so lucky not to have had a reaction to the morphine. It was great pain med and also kept me very sleepy and relaxed. It also worked in about two seconds so as soon as it hit the IV line it seemed to start working. The oxycodone works well but can take a while to hit so if you don't use it quick enough than I think you have a lot of pain to deal with for a while or it will take an extra pill to do what the first one should have done if you had taken it soon enough. I can see why people say to stay on top of the pain. This is the one thing I can't do because I need the break from the meds for my body. I am so satisfied with my whole experience though, the hospital staff and stay went so well. Even the food was pretty good :)
Me too!!!...lol.... I was sorry about it too, but it wasn't a horrible experience like some have had so I do feel lucky in that regard.
I am allergic to oxycodone...had it in Nov 07 after a knee surgery and I itched all over, however I had it in 2000 after a surgery then and no issues....but it is now on a list of meds I can not have.
I also do not smoke, drink ect...and it is funny how we can take meds and they work and the next time we r allergic....oh well...I am so happy u r feeling so well, but please go slowly as there r stages to recovery from this surgery and most feel great right after and then as u heal u may begin to feel some of the symptoms return....they do calm down, but I just want u to be aware.
U were lucky...I didn't like the food, the deli down stairs was good so DH and DD were running down for a turkey sandwich for me...lol....
Hey zygy I am glad to hear you are feeling so well! And please, keep on giving us day by day descriptions, because it might be boring to some but not me! I am a nosy person and especially when it's a situation I might have to go through. So anyway, keep on posting!
I agree, the more information the better! I read as many postings as i could, there is just so much information to be found here. It also really helps to hear the personal stories. At first the most helpful thing was hearing that I was not the only person that was beginning to feel crazy... it was so encouraging that "being told you are crazy" just seemed to be part of the process for everyone. Once I scheduled surgery it was just so important to me to read as many stories as possible to know what to expect. I think that reading the stories and checking the postings was more theraputic than talking to friends. They give support but i wanted information. Now, I just feel it is important to give back to the community that helped me. It is wonderful that people that feel great can move on but it is important to let people know that people can feel wonderful and move on. I am hoping to be one of those people but I want to continue to be a part of the chiari community. it is also very nice to be able to tell such a wonderful story! I never ever expected surgery to go so well and for me to feel so great at only one week. I can say that with just ibuprofin in my system :) LOL Yes, it hurts and it was quite the experience but just going to the bathroom without head pain this morning already made me feel like it was worth the surgery. I was so happy I could have cried or at least threw a party and had cake... most people would not understand my excitement. I have had issues for years but an accident five years ago made things get worse and this past year they were increasing rapidy... I was starting to be afraid of what was going on. To say I am happy with surgery in only 7 days is amazing and definately a story I would want to share. I know it is hard to choose this surgery especially when they can not tell you exactly what will change. They knew my main goal was to make the cough headache pains go away and it appears it is working. Good luck with your choice to have the surgery... I really knew I was ready.. I can't wait to be able to play and laugh with my kids again!! .... my latest recovery update is that my wrist is SO SORE... the arterial line made my hand, wrist and arm (almost to the elbow) ) I am not sure my wrist and hand are supposed to be so sore, I may call tomorrow if it is still bad. I really think the arterial line was one of my most unfavorite things! It hurt going in (only thing I remember from being half loopy in the OR before they knocked me out) it hurt coming out and it hurt after!..... and it still hurts. I had only had Vein IV lines before, I didn't realize they would be doing this kind. Lots of sciatic nerve pain too... maybe just from laying down so much. I am hoping as i walk more that this goes away soon.I will update again soon :)
That is kind of interesting b/c I am pretty sure that I didn't have an arterial line...just the normal IV in the arm (at least from what I can remember). I wonder why they did that line?
Thanks for the mental picture...now I am imagining myself in that pose...not very flattering to say the least...LOL...
Well I'm glad to hear that you had a good pain management plan...I am sure that my med problems were the reason why my recovery was so uncomfortable. I was sort of looking forward to being drugged out lol...in fact that is what kept me from being too scared about the whole experience. So it's probably good that I didn't know about that until after...anyways I made it through and at least I didn't get nausea to the point of throwing up. I just couldn't really eat for a few days and when I came out of anesthetic my vision kept rolling kind of like slot machines do but continuously..that was a little weird but settled down by the next day.
The first pain I noticed was down my back and legs too, it could be that you are doing a lot of lying down or sitting so see if you can try and change your position a little.
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