Please HELP!! 7 days post op

Question

Okay guys, I really need your help!  well atleast those of you who have had surgery..


I had surgery the 17th, my family was told everything went JUST fine, and in recovery and ICU they had me on a morphine drip which aslmost killed me..  I apparently DON"T do morphine..  My heart rate kept dropping to the 40's and it made my apnea SUPER bad..  My blood oxygen levels dropped to the 70's frequantly.  I stopped breathing SEVERAL times and hour.  I would wake up after a certain amount of time and my head would feel like thunder and lightning and then I would fall back asleep only to stop breathing again and the same thing... I told the DR and the nurses and they just said "hmmmm"  anyways, my sister and husband took turns the first 2 nights staying UP ALL NIGHT LONG so they could shake me and tell me to to breath..  Finally, a fabulous nurse named Jaimie started her shift and I told her the same things I had told the others and she looked at the chart and the morphine drip thing and said "HOLY ****!!!!!!!!!!  you've had 30mgs of morphine in 1 hour" and took me off it immediately..  Once I got all the morphine out of my system, I started to feel better.   I was released on Friday around NOON time and at the time I felt pretty darn good considering the circumstances..  I was taking the SAME and ONLY the same meds there that I am taking now...  BUT I feel like crap!!!!!!!!! and it's getting worse by the day.  I'm extremely light headed, and I have been having "kaleidoscope" vision in my left eye off and on and the worst part is the HEADACHE!  I can only lay FLAT with NO pillow and now movement and not talking and not NOTHING in order to feel decent..  If I do anything like talk stand up sit up my head just kills me despite being MAXED out on my pain meds all the time..  I take them religiously, and they only barely take the edge off. I called and they told me this is NORMAL.


IS THIS NORMAL???????


I fell worse now then I did when I left the hospital Friday, how can it be normal..


Please help me out here guys!

zygy2 · Answer

It is amazing how different each surgery and experience ends up being!  For me, the inability to stand and walk around ended up being chemical meningitis (aseptic meningitis).  I have also had leaks with two of my three surgeries, there can be so many things going on!  I also had no leak which at that time it forced the spinal fluid flow to change and that was doing serious damage to me. I guess my theory is that if you really know something is wrong just keep following it the way you did before having surgery :)  Chiari seems to take a whole lot of patience and persistence!  I waited too long each time because I tend to tolerate pain better than some.  When you know something is wrong you have to find help before more damage is done.  I would keep telling them what is happening so that maybe the pattern of symptoms will trigger then to be concerned  and take action!  until you find help I hope that you do start to improve.  -zygy

linnielou232 · Answer

I know what you mean about the Morphin. For me I didn't do well at all on morphin. If I ever had to have surgery again I definelty wouldn't have them give me that Med. It made me so sick. With me they kept stressing not to get sick and the more they said it the more I threw up. Thank goodness my daughter was with me at night because she was the one that recognized it was the morphin that was giving me problem's. I can believe the nurse's mistake. It's scary isn't it? With me when they put my lumbar drain in because I did have a CSF leak I layed in ICU for 15 day's and they drained the fluid. One night I got really, really sick. I was so scared. Well with me they had me lay at a 45 degree angle. (I couldn't lay flat at this time) They drained to much fluid out of me. It is scary when you are the one they make mistake's on. If I was you I would be persistant about your issue's because like you said you have a long way to travel. Don't take that chance to get home and have it get worse. Only we know our bodies and if you feel something isn't right, it probably isn't. Your in my prayer's. We all know what you are going through. I'm just glad to hear from you. Keep us updated please.

fblea · Answer

Hi - I had my surgery w/Dr. Heffez on 9/26.  Those first 10 days were horrible.  I seemed to feel better while at the hospital the last few days (but was not released until the Sunday after my surgery (was prior Monday) due to nausea and dizziness.  I couldn't be upright without feeling like my head was going to pop.  When I was discharged on that Sunday evening it was torture to be upright just to get from the hospital to the hotel.  Everyone also told me this was normal which was frustrating, but I pushed through it by staying completely flat (though on my side with a towel under my neck to keep my spine and head level -- because I can't stand sleeping on my back),  As long as I was down I felt ok.  The only time I would sit upright would be to eat or use the bathroom.   I could only walk with the walker because I was so unsteady and felt horrible.  When I saw Heffez to get the staples out, he said all of this was normal (as long as the pressure resolved while lying down).  He said it was likely a small leak that would likely resolve on its own so long as I lay flat as much as possible.  He said he "wouldn't throw in the towel on it" until 2 months! 
 I had to fly home the next day for 6 hours and was terrified of the same things you are.   I was given Xanax which really helped with the pressure/pain sensation and the flight home went fine.  Within a few days, the pressure and pain started to subside, though very slowly, but I have been careful to follow the rule they gave me -- for every 1 hour I'm upright, I need to lay flat 30 min.  Even though that was my experience, I agree with everyone else and insist on more answers if you feel something is wrong.  
It's always better to err on the side of caution.  I hope you get to feeling better soon and I'm sorry to hear of all the problems you are having.

luvmy2grls · Answer

I go to get my staples out tomorrow and I think I am going to demand they they look further into this..  I mean what are the odds that it is gonna seal on its own>???  I have a 11 hr drive (well i am riding) home tomorrow after I get the staples out..  I just talked to a gal from him office agian and she asked me If i was resting and that i was probably overdoing it...  UGH  I have been out of bed today for approx 1hr maybe even less today..  

I don't want to get back to nebraska and have even MORE issues and have the docs tell me to come back to this doc!!  we can't afford to be traveling back and for 11hrs...

selmaS · Answer

Hi...well I posted to ur questions  it vanished and knocked me off that I had to log in.....

  Yes, this sounds like a CSF leak...drink plenty of water, lie flat...do nothing but rest and lie flat for a couple of days to allow this to seal on it's own.....

 Caffeine can help, but don't over do it as u need to rest...but keep urself hydrated.

   If u feel the same in 4 to 5 days u need to be seen and a blood patch would be the next step if the leak is small enuff.....

   Keep us posted when u can, but lie down and rest.

        "selma"

Sexybare · Answer

i had similar issues. i had surgery in aug and havent been right since. selma is right, you may have a csf leak. i havent been back to my ns since i had staples removed and everytime i called them, they told me the same thing, its normal. how can they determine whats normal over the phone. you need time to heal they kept saying. WHATEVER. you know your body when somethings wrong. i go tomorow for a mri and csf flow study and i am almost sure they may find a csf leak or blockage for i had/have the same issues. you need to tell them you want to be seen. you have to tell them, otherwise they will just keep telling you the same thing. its not normal to feel worse. as for the morphine, wow. they had to put me on something stronger because that didnt do it for me,lol. so they wer overdosing you? i cant believe that, crazy.

luvmy2grls · Answer

thanks for your quick reply................

when I get up, i  get light headed and then my head starts pounding, kinda like Lightning and Thunder...  If I and just sitting, its not as bad but I am still super light headed..  I feel like I might vomit by looking side to side.. I didn't feel like this when i was was released from Columbia St Marys in Wisconsin.  Dr Heffez is my surgeon..  

and they didn't say THOSE EXACT words.............  but they said how I am feeling is normal..  I woke up went to get a snack to take with my meds and an ice pack and by the time I got back to my room I was bawling cause it hurt soooo bad..  and I wasn't do for any meds for another hour..

I was wondering if what I am feeling is consistent with a CSF leak

selmaS · Answer

Hi...no, that is not normal, sounds like u might have a CSF leak.

 U say u feel better lying flat, how do u feel when u get up and move....just to go to the bath room?

 I had a similar problem with the morphine...and I was lucky to have one nurse that changed the meds for me as the others did not listen to me either...what hospital were u at...lol...goodness...

 Did ur Dr tell u to feel worse is normal?

    "selma"