My first Surgery Story, what do you think? (This is long)

[xmelax35]

I want to tell you a little story about my Chiari Surgery at a non-chiari experienced hospital. Then I want to know what you think.

I came out of a very long surgery – to only be in severe pain. That is expected after being cut open. I remember being in recovery for awhile and then getting moved.  I was eventually moved upstairs to a room. I remember it smelling nasty. My mom said it was soaked in urine – the bed and among other stuff – I believe the floor and dresser. Idk but my mother had me moved. She was angry, I had just got in there for 1 minute and they thought I did it. I am a girl to start with and I don’t have anything I can write my name with if you know what I mean. Anyway, she got me moved to a new room. It was much better. Okay, so I was on a pain pump and I can tell you I was in SEVERE SEVERE PAIN!!! I kept telling them I was in pain and that the pump was not working! I could clearly tell no medicine was coming through. This was not a case of it feeling like it was not strong enough it was a case of it not doing ANYTHING! They kept telling me it was fine and it was working. I had one nurse who was downright rude to me! She said, “I have been working here for (insert years – I think she might have said 12) and I can tell you it is working just fine. You need to stop being a baby!!!” I was crying I was not only upset but in pain.

Next day one of the doctors came in and we said something to him about the pain pump and pain, my mother being right there. He told the on duty nurse to check it anyway. She said, “you are not going to believe this…it is not working. It is capped off”. I had no medication coming through that IV!!! It was capped off! So I went an entire day without pain relief! And after being called a baby and to suck it up and getting yelled at!

Okay so from there out it only got worse! I was told that if I had to go to the bathroom to call the nurse so they could help me there. I called and called and no one would answer. 45 minutes later I was about to pee the bed (that is probably what happened to the person in that first room).  I got up myself and tried walking myself to the bathroom – I was in pain and it was tough to get moving. Not far to go but seemed like forever. I ended up falling trying to get there and hit my head against the cabinet/hamper thing there by the bathroom door. I couldn’t get up! It took my roommate calling and yelling for help for anyone to come get me. Meanwhile I was in tears.  I think they were punishing me for the medication mis-hap!!!

I was never so happy to get out of there when I was allowed to go home. My nurse at the time, said she didn’t recommend I go home. She thought I was not neurologically ready to leave that day. However they released me anyway. I was actually glad to leave after the treatment I got. I had only one nice nurse in that whole place! It is believed that my fall had induced my sciatica! I left in so much pain in my lower buttocks/leg! Everytime I was moved I screamed/cried. It made me so sick to my stomach. I even had to go to our local ER it got so bad..I couldn’t hardly walk. The dr. came to the conclusion it was sciatica.

Anyway I will tell you that the First day out of surgery when you are in the most pain - the most crucial day, was not a good day and I was not being well cared for and they did not manage my pain at all! I was without pain medication! Unbelieveable! It was not until that second day when they started the pain medication!

So what do you think?

[xmelax35]

That is definitely a legit fear to have. I definitely can testify to what it feels like right out of surgery w/o any pain meds. These doctors should know that pain control is a must in any kind of surgery a person has.  That is surely a patients rights. I hope it gets straightened out for you. Let us know how that all goes. I just don't want anyone to go through what I went through. I will be thinking about you in the meantime. Good luck.

[pamk5]

The pain control issue among others is the reason I am most definitely on the list to see Dr Rosner.  I wish the medical board would hurry up.I think with that answer the NS gave me either he wasnt really as apt at this surgery as he claimed or he wasnt in tune to his patients needs.   I have a fear of pain and I guess my control freak self is terrified of having to wait for a rude nurse to get around to bringing me something while I wait in agony.  The only way I am letting anyone do this surgery is with a pain pump afterward.  The cap being on it and it not dispensing is horrifying as well.  I would say that is probably right up there with greatest fears when I think about this surgery after of course complications.  

Keep pushing, you have to be your own advocate with these doctors.  Some of them dont get it.  

[xmelax35]

Thank you all! I appreciate the kind words and stuff.  We are still upset about it to this day. My husband and I were just talking about it last week. He is still angry about it too. Denverluv, I know what you mean about the pain control.  I agree there is a reason they make the medication. It is out there for pain relief and it angers me too that they don't help those in need. Yes some people need to be on it long term, but it doesn't mean they are an addict, just means they have that kind of pain and low threshold for pain and need it to be controlled rather than having to make a hundred trips to the ER bec they feel they are dying from the pain.  There are addicts, but they really need to weed out the addicts, the people who have a condition that no one can see or just have a history of addiction and not write for those ppl.


Luckily for my neck pain/ migranes, my primary doctor is controlling my pain a little better. Only I think because another hospital ER said that I quote : "You have lousy pain management, you need on something that is going to control it better". Anyway they wrote me for a week of percocet, then my dr. put me back on vicodin. I do not take but 1 to 2 a day if that. I try not to take it but my pain now (since I am worse than before the surgery - bec of the cerebellar ptosis), is worse than it was b4 the last surgery. I can't wait to be pain free. I do also take treximet too but I am not allowed to take but 2 a week.

Oh and Denverluv, get this: I don't know if another ER doctor said anything or if they were just looking at my ctscan and thought oh she is not in pain, but my last ER trip, I got transferred to another hospital due to the severity of my migrane..well it was sooo bad, but they gave me meds in my IV which I had severe allergic reactions too (they had to give me benadryl via the IV to reverse the reactions) anyway, they were not pain meds or nausea meds (for nausea too)...they gave me Haldol (anti-psychotic med) and reglan (for acid reflux med)!!!! I couldn't believe it! That was not for pain relief. Who knows though...my mom was with me and she well is another story...she has to be right about everything and she thinks she knows all about my condition (the Chiari) and so she prob said something to them (I don't trust her) and they prob did that on purpose. My mom tends to think things like: it is just sinuses or it is just stress! I am not kidding either - that is her answer to everything. She may claim to believe me and act like she understands the condition but she is sometimes just like all the other non-believers out there.

[LisaM46]

What a complete nightmare!  It sounds like the introduction to a SAW movie or something.  I'm so sorry you were treated that way   : (

Lisa

[pr1nsis]

I can't believe you had such an awful experience!!  It is soooo discouraging to hear that nurses and the facility were not what they should have been!!

My room was so clean and the nurses were so kind and gentle with me!  I was VERY blessed with a positive experience!!

I didn't have a pain pump - it wasnt offered or was i really aware of it?!  I received a combination of morphiene (sp) through my iv and pain pills (im not sure what they were now) but between the two - my pain was pretty managable.  The iv meds and pills were about 2 - 3 apart so i felt like they had a pretty good 'handle' on keeping my as comfy as possible!

sorry again you had such an awful experience!!  i hope you ARE feeling better now!!

~jb

[denverluv]

I CAN'T BELEIVE YOU HIT YOUR HEAD!!!!!!!!!!!!

I cannot imagine that. I couldn't even tolerate the wind on my head let alone hitting it!!!!! I am just florred that you did that and then couldn;t get any pain relief! i was on Fentnyl and believe me I was calling for it EVERY hour on the dot plus my oxycontin- one nurse did try to tell me the doctor had taken me off and I was like I don't think so - she said "want me to call he" and I said damn right I do - the nurse was back in five minutes later with my meds.

There is no way I beleive anyone can go through this surgery with out the strongest stuff out there. I am getting really tired of doctors and nurses thinking everyone is a drug addict, when in reality it is THEM who are the addicts, and not providing pain relief! I would even bet some of these docs don't want to prescribe anything to patients because then it cuts into the rx they  write for themselves!

There is a reason these drugs are available - they work. There is a difference in dependence and addiction. Doctors need to get off their high horses (and nurses too) and realize just because they have the power doesn't mean they need to withhold pain relief. Why have they all forgooton the basic principle of being a doctor? DO NO HARM- leaving someone in severe pain because you have your own opinions or whatever reason is breaking that oath.

Sorry - this hits a nerve with me - I do get my pain relief but I read so many stories of you all out there that can't get anyhting and it is just awful. They DON'T know, they shouldn't assume to know.   I am not a vengeful person but dang - I wish they could feel our pain THEN tell us we don't need anything.

[xmelax35]

I agree with you! And thank you all too. It is awful because they should know that everyone is different. Some people even have a higher tolerence for pain than others and some have a very low tolerence. They should have that pain pump there no matter what. I don't think taking a tylenol or iboprofen would ever do the trick after a major surgery.  It is one of those things where you just want to ask the doctor, "have you had this surgery before", but you know you can't because then you might not be welcomed back.  It their duty to keep you pain free to provide pain relief.  I have had other surgeries besides the chiari surgery. I have had a hysterectomy, laperocopies (spelling is off), ovary removal, sinus/ear surgery, and breast reduction. Every single one they provided adequate pain relief. Of any of them I would think the sinus surgery and laperocopy would have been the more painless but even the tiniest incisions cause a great deal of pain. Plus anything from the neck above (head) when you experience pain there it is the worst pain in the world (even toothache). I would rather have a broken foot!

Anyway, I hope they end up providing you pain relief pamk5.

[selmaS]

HI...I wonder how the dr would know what level of pain u personally would feel????Everyone is different and that is y the pain pump is used so each person can get the pain meds each individual needs.....some tolerate pain better than others...I just do not understand.

"selma"

[pamk5]

Thanks for your story.  When the NS I saw on Monday was discussing surgery with me and I asked about pain control afterwards and ask specifically about a pain pump.  He said I wouldnt have that level of pain, I pretty much thought he was nuts.  This proves it.  

I am so sorry you had to go through that, what a horrible experience.

[selmaS]

That is another reason I say not to allow the name or rep of a hospital sway u on choosing a NS either....just bcuz it may have a good name and rep, it may not have chiari drs there.

[xmelax35]

exactly. They never took the plastic piece (whatever it is) off the tube to allow the meds to get through. Makes me mad that they would not check it for a day and half until the doctor visiting said to check it. They were very incompetant. Actually I have heard good and bad about this hospital and trust me it is a very big hospital and pretty popular (popular university hospital - the university popular for football #1 or #2 in football) Easier for me to say this way w/o saying where it was, ha ha.

[selmaS]

I hope u add this to ur profile page in ur journal so it is easy to locate again for reference.

Well I can say I have heard similar stories one member was saying the same that no meds were getting thru.....I told them to check the tube...they found that it curled under the member in the bed ans she was pinching off the flow...she had no idea, but her treatment was the same, rude, and they did not believe she was not getting the pain meds.

When we check out drs we aleo have to check out the hospital and staff that will care for us.....and be sure to have a good NL set up to take care of u after as well.


"selma"

[xmelax35]

p.s. I think my husband was there too for the pain talk. So actually I think I was 1 1/2 days w/o pain medication!