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lacey
07-14-2008, 08:54 PM
Hello everyone. Iíd like to introduce myself as I am new to this forum and have never belonged to a forum before. My mother actually discovered this site and after a lot of encouragement I finally decided to check it out. I have already found a ton of useful information here and feel lucky to find a group so supportive of each other

I was diagnosed with scoliosis during adolescence and never really had much problem with it that a few advil and a little nap didnít relieve until one month before my 40th birthday when one morning I could not get out of bed (June 25,2007). My husband had to literally pick me up and put me on my feet and off to the ER we went. I was given a prescription for pain medication and a muscle relaxer, both of which I did not want. I was told an xray was not indicated as the ER Doc felt it was just a lumbar sprain and to follow up with my family doctor which I did that day. For a year now I have dealt with unbelievable pain (which only you guys can truly understand), I continued to try to work until this last April but lost two amazing jobs in this time. During that time I had had multiple steroid injections which would only relieve the pain for short periods of time.

July of 07 my thoracic curve was 30 degrees and progressed to a 57degree curve in April of 08.

Finally on June 11 I had my first surgery for spinal reconstruction. It consisted of Xlif extreme lateral interbody fusion L4-5 L5-S1 and partial discectomy at L3-4. It was a rather bad experience mainly due to the nursing care which I find very unfortunate and disturbing being a nurse myself. My pain was so poorly controlled during the first surgery I am so frightened facing the second surgery, which was scheduled for today but was postponed last night due to a UTI I developed during the first surgery with the foley cath. Iím on my second round of Levaquin but just canít seem get rid of it.

My next surgery should be within the next two weeks. This one will consist of decompressing and rodding posteriorly from T9 toS1. Although I am very scared facing this next surgery I am also praying that it wonít be cancelled again. I have had three surgical cancellations now and after mentally trying to prepare myself for the surgery the cancellations are emotionally traumatic for me and my family.

I do feel very fortunate that my mother found this forum and look forward to getting to know all of you and becoming an active part of the group.

Yours truly,
Lacey

myachingback
07-14-2008, 09:46 PM
Hang in there girl. Sounds like you have had a really tough time. I have not had the surgery so I don't know what you are going through but you probably have the toughest part behind you now. I know the cancellations have been hard on y'all to but you are going to get through it. Maybe they should try a different antibiotic if the infection is resistant to the one you are getting. Looks like the doc's would know to do that. Since you are a nurse don't cut them any slack just because you are one. You deserve excellent care during this tough time. You know the tough parts of their job and on the other hand they should realize you need their help and support now. Keep us posted on your progress and try to keep a positive attitude.
Good Luck,
Prayers and Best Wishes,
Chris

Susie*Bee
07-14-2008, 09:54 PM
Hi Lacey! Just wanted to welcome you and let you know I'll be praying for you-- that you don't have any more cancellations-- and that your UTI gets cleared up quickly. That must be so frustrating to be all psyched up for the surgery and get it canceled...

I'm sorry you had a bad experience with your first surgery, but hopefully the nursing staff will be more "with it" this next time. Did you say anything to your doctor about it? I know some others on the forum have written about ways to be proactive about making sure the whole pain control situation is will be addressed properly. So maybe they'll write and give you some suggestions.

Keep the good attitude-- this surgery will be over soon, and then you'll be on the road to recovery with all this behind you. THAT is something to look forward to! :)

trishthedish
07-14-2008, 11:51 PM
Welcome, and I will be praying for you too, Lacey. The surgery cancellations and fear of inadequate pain control must be hell emotionally.

I don't know why your nurses are giving you a hard time about your pain meds. This next time, maybe if you told them that the Joint Commission (the main hospital accrediting agency) has listed adequate pain control as one of their national patient safety goals, and that you feel that they are falling short here, things will get better. I work as a hospital pharmacist and since you're a nurse, we both know that just the mention of JCAHO gives hospital staff the heebie-jeebies.

What's your urine culture growing? Ask to see that report! After all, it's your pee in their cup, for crying out loud.

Stay strong, and keep us informed as you can.

Hugs,
Trish

Qikdraw
07-15-2008, 11:27 AM
Hey Lacey!

Welcome to the family! I'm new too, and the people on this forum are great! Lots of helpful advice, sympathy and... well... more advice. :)

I'm sure things go better for you in the next round. As Suzie said just keep up the good attitude and that does help out a lot.

Brad

debbei
07-15-2008, 12:48 PM
Good luck with your next surgery Lacey. I will be praying for you. I haen't had surgery yet, and I wonder about the UTI's because I'm prone to get them as it is.

I hope your infection clears up asap and your next surgery can happen soon.

ladare
07-15-2008, 03:24 PM
Welcome, Lacey, to the scoli family! I will be praying for you also, that your next surgery proceed without any hiccups. In the meantime, lean on us for emotional support. There are so many people participating in this forum, so there is a WEALTH of experience to draw on here. As for the pain control in the hospital, I experienced the same problem with inattentive nurses. I was finally reminded that the pain meds were prescribed "as needed" so it was up to me to ask for them. And it took me a while to figure out that it could be as much as 45 mins after I asked until I actually received the pain med. It was VERY frustrating. The thing that gets me is why they prescribe "as needed" immediately after such a significant surgery.... I would encourage you to ask about 30 mins before the due time, and ask again at due time. Be persistant. Keep your spirits up. Soon you will be on the other side, healing, healing, healing.

Blessings,

Lisa

Janet
07-15-2008, 06:10 PM
I asked to be awakened every 4 hours to get my pain meds before the pain got out of control, but the nurses most of the time didn't wake me, so by the time I got the meds, my pain level was not 10 - it was 30! And when they asked me what my pain level was, I should have said "10" every time!!

Wonder why the orders are for "as needed" - maybe this should be discussed with the surgeon beforehand and possibly s/he will order "every 4 hours" as opposed to "as needed"

My thoughts are with you.

lacey
07-15-2008, 07:59 PM
Chris,
Thanks for your reply, you were actually the first person to welcome me to the board!

I am on a broad spectrum, rather strong antibiotic that is very often used to treat UTIs. I did talk to the Doc about switching but he felt very strongly about giving the Levaquin another 10 daysÖÖ..so 10 more days Levaquin has to clear this up! :rolleyes:

Yes this last year has been tough but I have a very supportive family, although what they are experiencing is very different from what I am which makes a board like this so wonderful.

In your post it doesnít mention whether you are facing surgery down the road ?????

Thanks again Chris and I will keep you all posted.

lacey
07-15-2008, 08:48 PM
Susie* Bee,

Thanks for writing to me and welcoming me to the board.

Yes the cancellations are very frustrating, especially the last one: I was scheduled for this last Monday (yesterday), I was completely packed for the hospital and also for the rehab center I will be going to as soon as Iím discharged from the hospital, My Mother was already in the hotel room next to the hospital she had reserved when I got the call from the doc at about 6PM Sunday, thatís when I was told it was cancelled AGAIN and thats also when he ordered ativan for ďmy nervesĒ

The whole issue with the nursing staff is if nurses donít know each other or work together they are typically not very nice to each other. I have no idea why that is but there have always been jokes about nurses being the worst patients and about older more experienced nurses eating their young (new grads and less experienced nurses)Ö..we were warned about that way back in nursing school.

Oh boy did I say something to the doc about it, his PA got a call on her cell phone from me at 6AM the first day post op when they closed my door and would not answer my call light. Next I called my Mother and she stayed with, sleeping in a chair for the remainder of the hospital stay. Iíll be going to a different hospital for the next surgery due to the fact the last hospital doesnít have all the equipment needed and this time I'm sure my husband will not mention to anyone that I'm a nurse.

Thank you again for writing and for the good wishes, I hope to ďtalkĒ to you again soon. Hearing from you guys that have already been there and done it and have come out successfully is very reassuring.

Lacey

CurvySAT05
07-15-2008, 09:10 PM
Hi Lacey,
Welcome to the boards! I hope the Levaquin takes care of your UTI quickly this time around and that you can have surgery ASAP. I wouldn't like having a 2 stage surgery too far apart b/c by the time you are going back into surgery you are finally crossing the hardest part of recovery from surgery #1.
RE: Nurses, (I'm sure you already know this, but just to re-iterate the point) every hospital has an ombudsman (sp?) who is there to be on the patients side to make sure the best treatment possible is given. If the nurses are ignoring your call lights and your pain is not adequately controlled then you should complain to the ombudsman and see if something can be done about it. I had issues with my nurses falling behind on pain meds and taking forever to answer a call light and another long time before they would bring the pain meds. The hospital had a patient rep that came around every day to see how you were doing and if anything needed to be changed. After complaining about the nursing staff for 2 days she filed a formal complaint and things got better really quickly.
I hope the staff at the new hospital will be better this time around. Good luck with your surgery and get well soon!

lacey
07-15-2008, 09:38 PM
Trish,

Thanks for posting, I am beginning to feel very welcome here.

The whole pain control problem started on my way from the OR to recovery. My PCA pump had become disconnected from the IV line, I was crying I was in so much pain and everyone kept telling "just push the button when you need to". Knowing there was a basal rate set and probably a 6 to 10 minute lockout I was still pushing the button about every 30 seconds. It wasnít until about 45 minutes to an hour later that I felt the sheets getting damp and looked over at the connection and saw what was happening. As I was trying to get someoneís attention (which was not easy since all the nurses heard me crying and complaining on how horribly bad it hurt for so long) I also pulled out my A line so there was blood everywhere, that got their attention. As you know the nurses have to record the amount received and the number of attempts as well as the rest of the info every fou hours. Well I probably hit the button 300 times the first hour and since the info on the pump is not cleared until after it is disconnected from the patient every nurse I had saw the ridiculous number of attempts. My husband had also mentioned to one of the recovery nurses that I was a nurse and the jokes started from there. As you probably already know working in a hospital and like I was telling Susie*Bee in the post above for some reason nurses arenít very nice to each other unless they know each other or work together and even then there is often a lot of animosity between the different shifts.

I did ask the PA about the urine today (thanks for the suggestion) only a UA was ordered, no C&S. I know what your thinkingÖ.why wouldnít they order the C&S after having two UTIís so close together. I never saw the order, it was faxed to the lab. And it never occurred to me that a C&S would not be ordered. Next time and every time in the future faxed or not I will ask to see the order!

Well thanks again for posting, and thanks a lot for that suggestion, I definitely learned a lesson there! I will keep you guys up to date with what happens.

Lacey

lacey
07-15-2008, 10:07 PM
Brad,

Thanks for posting to me. You sure are right on how wonderful these people are, Iím amazed at the responses Iíve gotten already. And yes Iíve already gotten some very valuable advice! I am very thankful my Mother was able to talk me into joining. I will keep working on the attitude. I think just by being part of this group will help as attitudes can be contagious when you let them and with all the positive feedback I have received already I think I will catch the right attitude just in time for the second surgery!

I see that you just joined in July? I guess we can be the newbies together :)

Thanks again,
Lacey

trishthedish
07-15-2008, 10:41 PM
Lacey, it's got to get better...that whole thing with the pca I totally get...I had a nurse who programmed the parameters into the pump and then didn't hit "run" or whatever and they kept telling me to push the button, too. And of course nothing happened. This was during my initial surgery in Midland, Texas, when the second shift nurse noticed that the pca syringe was still full after several hours of my crying and begging and button-pushing. I learned a lot just from the suffering and screwups during my first surgery, and it sounds as though you have, too. I hope the Levaquin finally kicks the UTI and your 2nd surgery and recovery go forward without a hitch. You will be in my prayers daily. Believe me...it's nice to be on the other side, finally recovering. Can't wait for you to be here too. =)

lacey
07-15-2008, 10:45 PM
Debbe,

Thanks for the good wishes and for taking the time to post to me. This is the third UTI Iíve ever had and I'm about to turn 41. I did not have any of the typical symptoms for about a week after coming home then only had the hesitancy.

I would mention it to the doc before surgery, as I'm sure you already know they will want to know any type of possible infection both pre op and immediately post op. The OR nurses are usually very good at using sterile technique when inserting them what I found lacking at the hospital I was in is the daily foley cath care which involves washing the tubing and insertion area very well, thatís were a lot of foley related UTIís start.

So you wore a brace for three years and were told it would not progress? When did you find out it was. That must have been so horrible! I saw your surgery is planned for October. How much time was there between finding out it was progressing and finding out surgery would be necessary?

I look forward to ďtalkingĒ with you often,

Lacey

lacey
07-15-2008, 11:28 PM
Lisa,

Thanks for the welcome into the scoli family! I already have begun to feel the emotional support with all the wonderful posts I have received, itís amazing.

Thank you also for the tips on getting pain meds in the hospital. As a nurse I canít even begin to put into words how disturbing it is to know that people have to make a plan or wait in pain in order to receive the medication they need. I havenít worked on the floor in a hospital for a few years now but when I did I always took my patients pain very seriously. Realistically it takes a max of 5 minutes maybe 10 if the med has to be witnessed by another nurse to get a patient their medication. Nursing care in the hospital seems to be getting worse as time goes by. A lot of nurses blame it on the nursing shortage but most of the time thatís a crock. The last day of my hospitalization from my first surgery my nurse had 3 patients and at one point it took her about 45 minutes to get my pain meds after I had asked. I agree with you 100% on PRN meds after this type of surgery (which I will be discussing with my doc) and I also think the PCA pumps are not appropriate either. With the PCA pumps the patients, including myself, watch the clock so they know when itís time to push the button again instead of resting or sleeping. Well I could ramble all night on how I feel about inadequate pain control and lazy nurses. :mad:

Thank you again, I hope to ďtalkĒ to you again soon ;)

Lacey

lacey
07-16-2008, 12:12 AM
Janet,

Thank you for taking the time to write to me, I have received so many wonderful posts I am amazed.

I just replied to Lisaís message on the same topic of not receiving pain meds when requested. You are so right about the docs not writing the order as prn because a patient can refuse a medication at any time. So if it were written for every 4 hours and the person was not in pain they could always just refuse it. I will talk with my doc about this before my next surgery, thanks so much for the suggestion.

Pain management is a very hot topic for me as a nurse and like I told Lisa I canít even begin to be able to put into words how disturbing it to hear about people having to wait ridiculous amounts of time to get their meds and then to experience it myself when I know it only takes a few minutes at the most (if the hospital is properly staffed) to get someone their medication. The last day I was in the hospital after my first surgery my nurse had only 3 patients and at one point it took her about 45 minutes to get my pain meds, thatís just laziness and not caring. The most patients I ever had at one time while working in a hospital was 8 and in a case like that it would reasonably take longer.

Thanks again for that suggestion, hope to hear from you again soon,

Lacey

debbei
07-16-2008, 05:56 AM
So you wore a brace for three years and were told it would not progress? When did you find out it was. That must have been so horrible! I saw your surgery is planned for October. How much time was there between finding out it was progressing and finding out surgery would be necessary?

Hi Lacey,

I found out the end of April this year; I had thought both my curves were in the low 30's, and WHAMO they were in the 60's. So I guess there is a little over 5 months between finding out and having surgery. My brain is more wrapped around the idea right now, but when I first found out I was a fruit cake. Just ask anyone here or go back and look at some of my old posts :)

I'm keeping my fingers crossed for you that your next surgery can go forward as planned.

Susie*Bee
07-16-2008, 07:11 AM
Lacey-- I am super impressed with your effort to respond to everyone who posted! That is "above and beyond"-- but also very nice of you! I'm afraid I tend to lump together and respond that way... :rolleyes:

Your mom sounds like a real blessing-- how wonderful of her to stay there in the hospital with you-- and to lead you to the forum, etc. She obviously loves you very much! :)

Since you will be in a different hospital for this next surgery, that sounds like you can start with a fresh slate regarding nursing staff expectations-- and go in hopefully armed with surgeon requested pain management requests (as in every 4 hours rather than as needed) etc., to alleviate the problems you had before. I have read others' accounts of similar problems and each time I am so thankful that wasn't my experience at all. ALL of the staff where I was were sooooo attentive and good. There was just one nurse (in 11 days) that wasn't "nice"-- but she still provided the care I needed. Hopefully your next stay will be more like that. It really surprised me to read that nurses can be rotten to other nurses! :eek: I would have thought it would be the opposite-- that if a nurse was a patient, her attending nurses would go out of their way to be the best for one of their own. I guess it goes back to human nature not being what it should be or something, but it seems pretty strange-- and very sad. :(

Keep us posted with how you're doing and the status of your surgery. I'm so glad you found the forum! :) Susie

lacey
07-16-2008, 08:28 PM
Trish,

Your right I have learned a lot in a patientís perspective and will definitely approach this surgery differently.

I canít believe that whole PCA screw up happened to you too, yours being so much worse. Wouldnít common sense tell a person if I patient is lying there crying and begging for help for hours that something terrible must be wrong. I just donít get it!

By the way I love your screen name! Thatís too cute! ;)

Lacey

lacey
07-16-2008, 08:40 PM
I did complain to my Doctor who was pretty upset with the situation but probably would have gotten a better response had I spoke with an ombudsman or patient advocate. I will keep that in mind if I run into problems again, which I doubt I will, I think I had enough with the first surgery to last a while. :)

Thanks,

Lacey

lacey
07-16-2008, 08:52 PM
During these five months are continuing to progress like I did or do they feel you are pretty stable right now.

And how is the pain, are you experiencing a lot and is it being controlled.

Lacey

debbei
07-16-2008, 09:03 PM
Lacey,

I'm not sure if I'm progressing or not. I really have no clue. I just know I can't afford to wait years for this surgery because God knows how I will be by then. I should have figured that maybe it was happening over the last few years, but I thought I was just getting fat. :) I noticed that when I'm driving, I feel 'rolls' under my braline in front where I never did before. I have gained a few lbs, so it is probably a combo of both factors. I also see much more 'love handle' on one side than the other. How disgusting is that? ICK-iepoo. Again, I thought it's because I've gained a few pounds.

For 2 months now, I have been using my treadmill 3/4 times a week, and a few weeks ago started using my total gym to get myself strong muscularly (sp?) and aerobically. My back pain has not increased, and maybe decreased since I started working out, but I do think some days that my thigh pain is increasing. That's what got me back to the Dr--the thigh pain. Little did I know it was coming from my back. I thought my lower back pains were part of normal aging. I am feeling overall stronger since I started working out again.