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junosand
12-24-2010, 10:18 AM
on Dec 15 i had a 10 wk followup with dr lenke; xrays were taken and he said things were as well as could be expected; said i could workout with weights and i could stretch, just to take it real easy at the beginning and stop if i begin to feel any pain

on the plus side:
1. i'm completely free of any of the preop pain i had in my buttock and legs;
2. i can stand and walk indefinitely;
3. i've regained some of the energy i had lost;
4. was able to wean off the pain meds (not pleasant)

remaining:
1. just very slight residual tenderness and numbness in the surgical area;
2. one thing worse after surg was a little weakness in my left quad, most noticeable when trying to walk up stairs, improved maybe 80% so far, can go up stairs without holding on the a banister now but takes some extra effort
3. just once in a while i feel a very slight ache at what would seem to be the top of the rod on the right side but not a problem at this point

my perspective on the surgery has changed some since my post about 3 weeks postop; i view it as an overall positive experience; the pain was soon forgotten but i was deeply touched by the many kindnesses and concerns shown me and these i will not soon forget

there is one thing i would do differently if i could do it again; the first night in the hospital i was left in significant pain and i don't think i recovered from this until after i was home; it is a well known principle of pain management that you don't let pain get out of control as it can be very difficult to catch up; mine was never caught up with, consequently i never could get any real sleep leading, i believe, to the 2 days of delirium i had, extending my hospital stay a few days; if i had to do it again, i would SCREAM BLOODY MURDER until i had sufficient pain relief to sleep (and then be as sweet and gentle as a lamb). Sucking it up was a big mistake. And as for that horse manure 1 - 10 pain scale, there are only two answers to ever give: 0 or 10, i.e. either you want more or you don't. If you think telling them 7, 8, or 9 will necessarily get you some more help, well it didn't for me.

Elisa
12-24-2010, 10:39 AM
Glad to hear everything went well and you sound really good.


And as for that horse manure 1 - 10 pain scale, there are only two answers to ever give: 0 or 10, i.e. either you want more or you don't.

^^ Oh, I'm definitely going to remember this one, lol.

JenniferG
12-24-2010, 03:07 PM
I absolutely agree with your comments about pain. I think good pain control is vital for a good recovery. I would never advocate "sucking it up." Pain prevents sleep, prevents the required amount of walking, dulls the appetite and sucks the life out of a patient. Pain takes away any feelings of positivity. And I believe, all these things are important to regaining strength and normality.

Just my opinion.

golfnut
12-24-2010, 06:04 PM
Junosand,
It sounds like you are doing well. Thanks so much for the tip. I will not try to be tough which would be more my nature than begging for drugs! I will yell, if necessary.

LisaB
12-24-2010, 08:55 PM
Junosand- glad your visit went well and things are as expected. Although my inclination is to "suck it up" also, the dosage of pain meds they initially gave me just kept me sleeping a lot so I didn't have to scream for more. Good advice to those with upcoming surgery. I think I was told somewhere along the line that you heal better if you're not fighting pain. Happy Holidays!

junosand
12-24-2010, 10:13 PM
ideally it would always go as it did for you; i don't think they took into account how habituated i was to start with from the 40 mgs of oxycodone i had been on daily for over a year preop (percoset 10/325 4 times a day) and not one of the nurses was really proactive about it; at the local (level II) hospital i practiced at, the nurses are trained and encouraged to be proactive about pain and i expected they would be at BJC; i'll also add that, among the nurses i've talked to about it, this is not something they consider an extra burden, they embrace it

junosand
12-24-2010, 10:17 PM
definitely! do NOT put up with insufficient pain relief, especially in the first few days; make sure you are getting some meaningful sleep; you will (i think) be cared for by the same staff on the same floor where i was (7th floor, Barnes South)

loves to skate
12-25-2010, 10:07 AM
I'm glad to hear you are doing so well at 10 weeks. I am surprised to hear that as a Doctor yourself, that your pain was not addressed properly. Where was your surgeon in all of this? Keep healing and hope you are enjoying Christmas.
Sally

junosand
12-25-2010, 10:48 AM
pain management is largely left to the nurses; the surgeon doesn't hear about it unless there's some big problem; i was not vocal enough; the first night, though, it was so bad that the nurse did call the doctor (the 1st yr orthopedic resident on call); he ordered an increase in the pulse dose on the pca pump (it turned out the basal rate had been on 0 the whole time and was left so); this was at 2am; it was not turned up until 5am; when asked repeatedly why it was not increased yet, the nurse said "the order hasn't been entered into the computer yet"; truly amazing i didn't go ballistic

loves to skate
12-26-2010, 02:10 PM
This should not happen to anyone. I had a friend that this happened to also. How is the poor patient to know other than to suffer? Did your surgeon not include pain medication into your incision? Mind did (don't remember what it was) and I felt no pain for at least the first 12 hours and by that time, the day shift was in to check on things.
Everyone - scream if you have to! Before surgery, ask your surgeon if he includes pain medication in your incision before he sews you back up.
Sally

debbei
12-26-2010, 03:08 PM
Yes that medication in the incision was a God send, but when it wore off, boy was that a surprise! If only our post-surgery pain could be like it was during the first pain hours, this surgery would have been a breeze! :)

peachrush7
12-26-2010, 03:16 PM
thank you for such wonderful, specific advice. I'll be sure to holler if I'm being ignored tomorrow night!

i have found with previous surgeries, it can depend on the nurse how well your pain is managed. some nurses are on top of it, giving you the doses before they wear off, and others seem to wait till the very last second. It's hard to be a complainer, but in this case it's absolutely necessary to make your needs known.

again, thanks for posting this!

Heidiv2
12-27-2010, 08:56 AM
JUNOSAND,
So glad to hear from you. Sounds like you are doing well, and I am glad that you are viewing it as a positive outcome! I agree with the pain management. Once you are out of control with pain, it takes a LONG time to get under control once again. Sometimes it never does. Don't be a hero, those of you still waiting, take/ask for the meds!!! pain of 10, 10, 10, shows medical staff that your pain is not even close to being under control and pushes them to find meds that work for YOU. Oh, yeah, and as a nurse, I always put my pts on a schedule to anticipate the pain, it makes their and my day so much better! We start to lay off when they are under more control

titaniumed
12-27-2010, 09:49 AM
Junosand

You sound great!

I agree with being vocal, which I was. I had no problems in that department, and basically was knocked out on a regular basis for 10 days.
Hard to believe, but screaming does help sometimes! LOL

Your perspective on surgery will change as the months go by. After 3 years, I look at it totally different now and of course, wouldn’t change a thing. It does get better, but it does take a long time. I feel it takes at least 2 years for a procedure like mine. 90% in the first year, 10% for the second year, the year of fine tuning and getting over the fatigue.

You are past the hard part now and the light at the end of the tunnel will become brighter as time passes. Break out your sunglasses.
Ed

golfnut
12-27-2010, 10:09 AM
Heidi and Junosand,
I am so glad to get this advice, because I know I would have tried my best to be tough. If you have any more advice, I'm listening.

junosand
12-27-2010, 04:30 PM
toughing it out in my case probably caused 3 extra days in the hospital, to belabor the point; make sure you get some sleep, DEEP MEANINGFUL sleep, not restless 10 minutes at a time; if you don't then you are insufficiently drugged; in any case, but especially if you are in a room without outside windows as i was, keep yourself oriented to day and night; keep up with what time it is; ask for lights on all day, lights off at night

if possible, have a family member or trusted friend at your bedside 24/7 to be your advocate

try to get out of there as quickly as you can; hospitals are actually dangerous places for infection and the inactivity and lack of control are soul destroying; if you aren't confident enough to go home, you can stay at the Parkway Hotel for another few days, a week, or as long as you want (attached to the hospital by indoor walkway) and rehab as did LisaB in more comfort and freedom; with the prescriptions, you can do your own pain management

to get out quickly, as kelly told me, get moving as soon as you can; when the PT person shows up the next day and tells you that you can stand up and take a few steps, you won't believe it (i didn't) but you CAN; don't refuse this, TRY it, at least;
this piece of success was the only high point of my hospitalization other than leaving;
after this, walking around the floor was easy; i did it much more often than asked, it didn't hurt and it was nice just to get out of that damn bed

the other discharge metrics are eating and pooping; you will have absolutely no appetite but when the tray come you just force yourself to put something down; they will stuff you with laxatives (in my case 3 different ones) to take care of the rest

i will be very anxious to hear how you do; it will probably take weeks after getting home before you feel up to posting and we will all understand this; if you have any other specific questions before your surgery, feel free to ask on the forum or by private message

golfnut
12-27-2010, 07:57 PM
Thanks for not sugar coating it. I don't think I would be opposed to going to rehab. or the Parkway Hotel, but do I have any say in the decision as to when I would be ready to leave the hospital and if I could go home, rehab., or the hotel? Fortunately, Waterloo, IL is only 30 miles away, but would not want to go home prematurely and end up in ER. I will definitely try whatever is asked of me.
Thanks so much.

Jacque's Mom
12-28-2010, 07:35 AM
"I don't think they took into account how habituated i was to start with from the 40 mgs of oxycodone i had been on daily for over a year preop (percoset 10/325 4 times a day)".

JUNOSAND: this was a huge concern of mine as I have been in pain management for eight years and have been on 10 mg of Methadone twice a day for the eight years, along with Celebrex, which I am now off of. My concern was how are they going to get my pain under control if I'm already on a narcotic for so many years and prior to surgery. In September I had an appointment with Dr. Boachie, and he said he wanted me off the Methadone. I called my pain mgmt doctor immediately, and he didn't think it was nec'y so he called Dr. B. and they came to the conclusion that I should stay on it. Dr. Wang, Pain Mgmt at HSS, is a very good friend of my pain mgmt doctor so that was great. They spoke a few times prior to surgery, and he visited me twice a day for the entire stay I was there to make sure I was okay with my pain level. In order to get my pain under control they did the following: They increased the pump medicine (don't ask me to what, I have no idea), and after that was disconnected, increased my Methodone to three times a day, and added 10 mg Oxycodone 2 tablets every 4 hours. That seemed to do the trick. Oh I knew when the next dose should be coming, but they really got my pain level under control. Now that I'm home, I am on the Methadone three times a day and the Oxy I am taking it every six hours or so and NOT waking myself up during the night to take it. This is just the last few nights I've been doing this and it's been working. I know that once I am off the Oxy, then the fun begins getting off the Methadone that I've been on for so long. I'm a little anxious about it, but have complete confidence in my pain mgmt doctor. He's a wonderful, caring person. I realize it will take some time for me to be off of it completely, but that's okay with me. It's been such a long journey, what's a few more months when I know what the outcome will be.

It goes to show, every person is different in their recovery process, but in the long run hopefully everyone has a successful outcome. I wish everyone the best. LYNN

junosand
12-28-2010, 11:32 AM
i would let them know that you WANT to leave as soon as able; since carbondale IL is only 100 miles from STL, i went straight home; the Parkway is another option for those who live far away or not sure; you have the absolute right to leave at ANY time (maybe AMA = against medical advice) but it's doubtful you will have any disagreement with them; if so, it's a negotiation with you getting the final say

which segues into jacque's mom's post, i.e. i should have discussed the pain management in detail with kelly beforehand; i assumed they had so much experience with pain that it wasn't necessary; wrong

golfnut
12-28-2010, 12:05 PM
Junosand,
How can I get a pain management Dr.? I get the feeling that Kelly is the one in charge and sweet as she is when I have expressed my concern about too much or not enough pain meds., she says that everyone is different. I know that is true, however, I don't have any experience with pain meds and it worries me.

Heidiv2
12-28-2010, 02:39 PM
Golfnut,
I definitely think that you should call and start with Kelly at Dr. Lenke's re:pain management. Push for them to address it prior to surgery. Also, keep a loved one at your side 24/7 for the first few days to advocate for you/ keep track of when things are due, be there when the doc visits (5-6am if Kelly hasn't told you yet-wasn't that right Junosand?). I agree with Junosand that I expected the famous BJH to have a "pain management team" and they really just had residents on call (which they did call for changes for me) but the dilaudid in the PCA the first few days didn't really help me as much as when they took me off it and started the percocet, oxycodone, flexeril and valium orally on a schedule. The dilaudid made me feel weird but didn't take away my pain as much. Of course, I didn't realize this until they switched me over.