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shocked at how much pain i am feeling without NSAID help...
see pain doc's PA tomorrow in NYC to discuss meds...
but will probably schedule steroid shot for left hip for December....
figure it is less area and will require less of the steroid...
the spine is bad but i cannot risk the amount of steroid it requires
to relieve the pain...takes alot, and i cannot risk the cortisol drop
again...no guarantee it would come back a second time...
very discouraging that the NSAID was what was causing pain reduction.
not healing of left hip...
ah well....
this is not for sissies, as i think Sally (loves to skate) wrote...
neither is aging...
Sorry the pain has come back so badly, Jess. Good luck tomorrow!
Surgery March 3, 2009 at almost 58, now 63.
Dr. Askin, Brisbane, Australia
T4-Pelvis, Posterior only
Osteotomies and Laminectomies
Was 68 degrees, now 22 and pain free
Your not taking any NSAID’s? Are you taking anything at all?
What about a warm pool. Warm water therapy?
I hope this flare up passes soon.
Ed
49 yr old male, now 63, the new 64...
Pre surgery curves T70,L70
ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
Dr Brett Menmuir St Marys Hospital Reno,Nevada
Ed, i reacted to the Diclofenac, as i feared would happen, about a week or so ago....so i am now allergic to Vioxx, Celebrex, and Diclofenac...
which makes NSAID's off limits to me....
i didnt realize how much pain relief i was getting from Diclofenac til i stopped taking it completely...
i have hydrocodone and oxycontin...but am needing to increase how much of it i take without an NSAID to cut the inflammation...
so the hip hurts, and spine feels worse...makes me wonder about surgery...
problem is, too much steroid and my cortisol will crash...so i have not had any steroid shot in over a year...
therefore, narcotic pain meds are all i take lately...
thanks again...Sharon, Jennifer, TiEd....for the replies..
am seeing pain doc in Manhattan today...
the train ride is not fun when in pain...
will probably cave in and ask for steroid shot in hip for next month...it is a small area to put shot in hip, compared to entire spine, as i used to
get.
i am staying over in Manhattan tonite, returning to CT Wednesday...will not be back online til Wednesday nite...
but seeing Manhattan again, especially at nite, is good for my soul...
I'm sorry the pain is getting worse again. Is there anything you can do to modify your routine? When my back/leg pain was at its worst I used a shower chair and sat down to put on makeup, for example. I also would put one foot up when I had to stand--like to wash dishes I would put one foot on the inside ledge of the cabinet below. I would try to lay down for a few minutes frequently. Hearing pads. And what about topical pain relievers - the patches or creams? Just brainstorming here. I'm sure you've probably tried all of this already.
Thinking of you,
Evelyn
age 48
80* thoracolumbar; 40* thoracic
Reduced to ~16* thoracolumbar; ~0* thoracic
Surgery 3/14/12 with Dr. Lenke in St. Louis, T4 to S1 with pelvic fixation
Broken rods 12/1/19; scheduled for revision fusion L1-L3-4 with Dr. Lenke 2/4/2020
Not "confused" anymore, but don't know how to change my username.
i just got back (this afternoon) from seeing PA at the pain doc office in Manhattan...
i got a script for PT for the left hip. i was scolded for having increased
the hydrocodone just for a FEW DAYS after i reacted allergically to the
NSAID and needed relief from the increased pain... i thought it better to
increase the hydrocodone rather than the oxycontin, but was told the
opposite...that i was getting too much tylenol and would be better to
increase the oxy if i needed to take more pain meds....
so i will be going up to two oxycontin from one a day, and staying at
the previous maximum of 6 hydrocodone a day, IF needed...
was also given a script for skelactin...(splg??) have never had it before...
but will pick up prescription and see if it helps my pain.
i also agreed to a steroid injection in left hip for Dec 11th if i can be
squeezed into schedule that day....i am VERY NERVOUS about that...
it has to be the minimum amount of steroid possible...i am very scared
that my cortisol could drop to zero again...
i thought left hip would need less steroid...but PA claims it will be same
amount as if doing spinal injection....that shocked me and i said i need to talk to pain doc about it...
i mentioned to the PA that i am wondering about surgery...
as usual, she was against the idea...in my experience, pain doctors and
their staff are against fusion surgery.
thanks for the concern...
hope you are feeling well, Ev..
have a wonderful Thanksgiving
jess...and Sparky
so sorry to hear about your hip pain---I hope the injection will go well and provide some needed relief.
No surprise that the pain office was against surgery--they really have no clue about fusion surgery for severe scoliosis vs. the small garden variety one or two level fusions that so many people have for simple herniated discs, many of which don't seem to help apparently. Please don't listen to their opinions about surgery.
If you are wondering at all about surgery, it seems like Lonner would be a great source of accurate info that pertains to your spine specifically.
I hope you and Sparky have a wonderful Thanksgiving. Does he get to taste any Thanksgiving treats? We have two greedy dogs with iron stomachs, so they will get to enjoy some turkey!
Gayle, age 50
Oct 2010 fusion T8-sacrum w/ pelvic fixation
Feb 2012 lumbar revision for broken rods @ L2-3-4
Sept 2015 major lumbar A/P revision for broken rods @ L5-S1
mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
2010 VBS Dr Luhmann Shriners St Louis
2017 curves stable/skeletely mature
Jess,
I hope you make it home safely today. I know you LOVE the city and will miss it.
I had to quit taking my NSAID (naproxen sodium) because it was ripping my guts apart. The other ones designed to be lighter on the tummy just don't have the strength to help. I didn't realize how much pain I was in until they disappeared from my diet. At least I can start them again for a little while. I can only use them for about a month at a time, then my guts hurt so badly that I can't eat and lose a bunch of weight that I can't afford to lose. I got chewed a little by my nurse for losing 4 pounds this last visit.
I don't understand why your pain management team is so against surgery for you. They aren't like that with me. Well, one doctor was, but he's gone. Do they want you to have permanent nerve damage? Don't they understand that's what can happen? It just doesn't make sense.
I hope you feel better on the upped oxycontin. Since they changed the formula and put plastic polymer in it, it just doesn't work AT ALL for me. Yes, you have to watch your acetaminophen intake. For those of us taking it regularly they don't want you going over 3,000mg/day. In fact, I think the FDA lowered it for everyone from 4.000mg to 3,000mg/day. It's a MAJOR cause of liver failure. One doctor told me that it's the most dangerous drug out there for that reason alone. My doctor told me to try to keep it down if I can.
I hope you get to feeling better soon. I'm sure December 11th can't be here soon enough... with apprehension, of course. I hope it works with no ill effects.
Take Care
Be happy!
We don't know what tomorrow brings,
but we are alive today!
thanks Gayle and rohr, for the kind comments...
the train back from NYC left Penn Station an hour and a half late...
made for a long day...
i have never met a pain doctor yet who was in favor of fusion surgery...
they all said not to do it for pain relief, "as you may not get any"
and only to do it if the progression of curves is very fast and very bad...
am hoping the PT, the skelactin (splg?) and the steroid shot next month
will help reduce the level of pain, along with an additional oxycontin a day...i held off on increasing the oxy for as long as i could...
and will have fingers crossed that the steroid does NOT bring my cortisol down.
i hope everyone has a wonderful Thanksgiving..
Sparky is my little angel that i am so very thankful for...he will get a few little Thanksgiving treats for the holiday...
i am thankful for the people on this forum, too.
rohr, i am sorry the oxy doesn't help you anymore, but glad you can still take an NSAID,
even if it is not continuously...whatever you can do to get the meds to help, without
them ripping your stomach up..
Gayle, i hope you are well and free of pain.
Jess,
I've taken Skelaxin before. It's a mild muscle relaxant. I found no relief with it and coupled with the other meds I was on at the time, hydrocodone and diazepam, it made me throw up. My two muscle relaxants that I use now are baclofen and klonopin (clonazepam). This combination is much more helpful. Although, I found Soma (carisoprodol) to work quite well, my physician is not willing to prescribe it. When it's metabolized it first acts as a muscle relaxant, then breaks down into a tranquilizer type med like the benzos. He said it can be quite addicting. Honestly, I wish I could still take it now and then. I do have some left, but I'm not in to mixing all these meds! I do want to stay alive. LOL
Last edited by rohrer01; 11-23-2013, 04:15 PM.
Reason: spelling error "skelaxin" LOL
Be happy!
We don't know what tomorrow brings,
but we are alive today!
Good luck Jess. I hope one way or another, you can reduce this pain, safely.
Surgery March 3, 2009 at almost 58, now 63.
Dr. Askin, Brisbane, Australia
T4-Pelvis, Posterior only
Osteotomies and Laminectomies
Was 68 degrees, now 22 and pain free
Have a great Thanksgiving--and hopefully a better feeling day!
T10-pelvis fusion 12/08
C5,6,7 fusion 9/10
T2--T10 fusion 2/11
C 4-5 fusion 11/14
Right scapulectomy 6/15
Right pectoralis major muscle transfer to scapula
To replace the action of Serratus Anterior muscle 3/16
Broken neck 9/28/2018
Emergency surgery posterior fusion C4- T3
Repeated 11/2018 because rods pulled apart added T2 fusion
Removal of partial right thoracic hardware 1/2020
Removal and replacement of C4-T10 hardware with C7 and T 1
Osteotomy
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