4 months, still need pain meds. Getting a little old!

[Confusedmom]

Scapula, laundry and titanium, oh my!

Hi all,

A few random updates here.

One, my mysterious hip/leg pain seems to be going away. Yay! I do feel it a little, but not nearly as bad.

Two, what the heck is up with scapula pain? I FEEL like I have winged scapula, like my shoulder "bump" or angel wing sticks out too far on the right side. It hurts a lot when I put any pressure on it--like sitting against the back of something or, unfortunately, lying down. For this reason I am lying on my side a lot, which is not comfortable either. Anyway, it doesn't LOOK bad. However, I have noticed my rib hump returning a very little bit. Not sure if it truly "returned", or if it was masked by the swelling initially. Anyway, has anyone else had this type of scapula problem post-op? I don't know what to make of it. My issues were primarily lumbar pre-op, and certainly nothing like this.

On the bright side, I have figured out how to do laundry!! This is a big deal for me because I'm a stay-at-home mom right now with two grade school kids and about 4 loads of laundry a week. I bought a wheeled cart off amazon, so I don't have to pick baskets up off the floor. And I am using a "cane with seat" to sit in front of my front-loaders when I am using my grabber to get things in and out. I literally got a blister from my grabber the first week I did several loads. So, I also mix it up with the dressing stick, which is good for kind of shoving things back in the machine. I'm folding standing at my kitchen island, so no bending there. Phew. It takes three times as long as pre-op, but at least I can do it!

And finally, for a little inspiration, I recommend you all listen to the song: "Titanium." Top 40 right now. I can't figure out how to paste the exact lyrics in here, but it's basically: "I'm bullet proof, nothing to lose. Fire away, fire away. Ricochet. You take your aim. Fire away, fire away. You shoot me down, but I won't fall. I am titanium. You shoot me down, but I won't fall; I am TITANIUM." (Okay, so technically I'm cobalt chromium, but I have titanium cages.) Anyway, a good little tune for those of us with a rack of metal in our backs!!

Cheers,
Evelyn

[susancook]

Evelyn, I feel your frustration! Keep calling and telling Dr. Lenke's office how you are doing. Call every day if you need to. If you feel the pain it is real. Sorry that I am not more help, but continue to communicate your needs. That is the only way that anyone will know how you feel.
Susan

[golfnut]

Hi, Evelyn,

I'll have to listen to Titanium. That could be our theme song for the forum. I also had some odd pains in the scapula areas and felt like my shoulder blades were really sticking out. When I went to physical therapy at a year, I was given exercises to strengthen the muscles that were cut between the shoulder blades and that seemed to help. For the first 6 months or so, I couldn't lay on either side. For some reason, I felt like my lungs were being crushed and it was terribly uncomfortable. I didn't move off of my back for an entire year. The good news is that with time most of our aches and pains subside, but it doesn't hurt to inquire at Dr. Lenke's office with any pain that concerns you. I hope you get a quicker response the next time. Kelly was so good about returning calls.

[djkinkead]

Hi Evelyn,

Glad to hear some of your leg pain is going away. Its kind of scary when new aches and pains are felt.

I also went through what you are feeling about the rib hump being super sensitive to pressure. I had (and still have) pillows all over the house to lean against. In the car I use the memory foam side sleeper pillow I purchased at Kohls...it was the best at relieving the pressure on the rib hump and letting me relax.

I have memory foam on our sleep number bed (set at the softest setting).

I am now almost one year post op. My rib hump isn't so sensitive anymore, but I still keep the fat memory foam in my car....it's kind of my ahhhhh...moment for my back. :-)

When I travel, I carry a two inch think memory foam pillow for use in the plane and the rental cars. It helps.

Things will settle over the next six months...mine certainly did.

I liked your description of the laundry...yep, using the grabber and the cane to shove clothes in and out.

Best wishes--it will get better as time goes on. Will say prayers for you!

[jrnyc]

hi Ev
glad you finally got a call back from Lenke's office....
i am a little confused with "you are not on too much
pain medication" but they won't be refilling this med
or that....?
i hope you do have the time to find a local pain
management doctor...i think it would be a good
resource in case you need help.... with pain doc
getting to know you now, IF any crisis happens,
you would have someone in place who could help
right away...

hope you feel better every day....
jess....& Sparky

[Confusedmom]

Thanks Karen & Djkincaid,

Glad to know I'm not the only one with scapula issues! And even more glad to hear they get better with time. I will have to get one of those memory foam pillows for the car.

Jess, I am off prescription pain meds--as of yesterday!!!!!! I had been down to 1/2 Norco for a couple of weeks and just switched to Tylenol yesterday. The posts about "not refilling" were along the way. I am 5+ months post-op, so I did need a number of refills. I wanted other Lenke patients to know they don't routinely refill all of the meds. Fortunately, I've got some Norco left, so hopefully that will get me through the occasional needs that I'm sure will arise. Sorry for the confusion.

Has anyone heard that song yet? "Titanium"?!

Best,
Evelyn

[Doreen1]

Thanks Karen & Djkincaid,

Glad to know I'm not the only one with scapula issues! And even more glad to hear they get better with time. I will have to get one of those memory foam pillows for the car.

Jess, I am off prescription pain meds--as of yesterday!!!!!! I had been down to 1/2 Norco for a couple of weeks and just switched to Tylenol yesterday. The posts about "not refilling" were along the way. I am 5+ months post-op, so I did need a number of refills. I wanted other Lenke patients to know they don't routinely refill all of the meds. Fortunately, I've got some Norco left, so hopefully that will get me through the occasional needs that I'm sure will arise. Sorry for the confusion.

Has anyone heard that song yet? "Titanium"?!

Best,
Evelyn

CONGRATZ on weaning off the meds! What a tremendous step in your journey! :-) I heard the song Titanium, but like Kelly Clarkson's song "Stonger" for the verse: What doesn't kill you makes you stronger, stand a little taller... (4 inches taller!)

My daughter is helping me create a walking playlist for the songs that really get me pumping:
Let's Go! - Calvin Harris
Too Close - Alex Clare
Chasing the Sun - The Wanted

Warmly,
Doreen

[Irina]

Congrats on being off prescription meds!

[Susie*Bee]

Evelyn-- that's great news about the meds. Congratulations! That's right when I got off meds, although I still needed tramadol sometimes. I already started a reply to you and lost it, so now I have to think of it again. DRAT! Thanks for thinking of my leg cramps. No, my potassium is fine. I just had my lab work done. My family doctor thought perhaps that episode was brought on by the high altitude along with all the traveling. Who knows??? My toes still hurt a little, but what are a few toes compared to our backs, right? We are STRONG!

It sounds like you are doing just great. If you could go back and see some of my first posts, you'd see all these "how LONG does it take?" and "I don't seem to be making much progress..." type posts, interspersed with some "Yay! I'm doing fine!" etc. Ups and downs. I was glad I had that scrapbook to keep me focused and seeing the positives when I was down. I'm a visual person and I could see the pictures of how far I'd come... But I was really weak, physically, and unable to do quite a lot of things still by the end of the year. My husband had to drain the spaghetti, pour the milk, etc. Too heavy-- too far out in front of me. No problem now, of course. Some things still are though. And that's ok with me. I have a great life-- and a great husband. Tomorrow is our 40th anniversary!

SCAPULAS??? You bet! Plagued with scapula tenderness/aches. Both sides. Even now, if I press on them, they are tender. Guess what? I don't press on them! Tee hee. But during the winter, at outside recess they bother me. Just one of those things. I used to try to explain that it felt like I was one of those insects in my kids' bug collections that got their wings pinned. At our high school, all the biology II students have to do an advanced insect collection... Anyway, it doesn't feel like that anymore, and I hardly notice it except when it's really cold or when I've done too much. OR when I press on them. Silly me.

You take care and take each day and treasure it. Each day you will improve and be blessed. I worked REALLY hard to build up my strength that first year because I wanted to get back to work and because I wanted to be able to live my life DOING things. I spent hours and hours every week working at it... You will do just fine. Hugs, Susie

[Confusedmom]

Susie Bee,

You are so sweet. I wish I could meet you in person and give you a hug!

I read your message a day or two ago, but just now am having a chance to respond. I've been thinking a lot about what you said about working at recovery for hours each day. It has given me new inspiration to get out there and get walking (more)!

I do of course have all the various aches and pains I've mentioned, but it does seem to be getting better, little by little. Every week or two something amazes me. Like, for instance, today when I was using our printer, I actually sat down on the floor without thinking about it! It started to hurt, so I got back up. But just getting down there would have been a major hardship a few months ago. (BTW, I have been given the okay to start doing the BLTS.)

Well, thanks again for all the encouraging posts! I am so grateful for this forum and all of the wonderful people on it.

Best,
Evelyn

[golfnut]

That was a nice post, Susie Bee. I also worked really hard on regaining strength by doing lots and lots of walking and water aerobics. Janet gave me some arm exercises to do with light weights at my 3 month check up.

[Confusedmom]

Pain question

Hi all,

Status update. (Not a grump date so much this time!) I am 7 months post-op. Had my checkup with doctor Lenke, and X-rays looked good. I'm doing PT now and still walking. In general, I'm living my life and starting to feel somewhat "normal" again. The shoulder/scapula pain I mentioned earlier has subsided, and even the "bear claw" seems to be slowly going away.

My one major remaining issue seems to be this deep pain in my sacrum area that can radiate out to my hip and sometimes down my leg. I'd love any input on what could be causing it, whether there is a solution, and what that might be. Also, if anyone has had similar pain, what did you do to address it?

Dr. Lenke prescribed the PT and is letting me take anti-inflammatories now. They help, but I don't want to be taking indefinitely. Does this type of pain subside? I know I need to be patient until a year post-op, but it's difficult not knowing. I would love your thoughts.

Best,
Evelyn

[JenniferG]

Hi all,

Status update. (Not a grump date so much this time!) I am 7 months post-op. Had my checkup with doctor Lenke, and X-rays looked good. I'm doing PT now and still walking. In general, I'm living my life and starting to feel somewhat "normal" again. The shoulder/scapula pain I mentioned earlier has subsided, and even the "bear claw" seems to be slowly going away.

My one major remaining issue seems to be this deep pain in my sacrum area that can radiate out to my hip and sometimes down my leg. I'd love any input on what could be causing it, whether there is a solution, and what that might be. Also, if anyone has had similar pain, what did you do to address it?

Dr. Lenke prescribed the PT and is letting me take anti-inflammatories now. They help, but I don't want to be taking indefinitely. Does this type of pain subside? I know I need to be patient until a year post-op, but it's difficult not knowing. I would love your thoughts.

Best,
Evelyn

Did Dr. Lenke have any idea what could be causing this pain, which sounds very unpleasant? Perhaps, once the inflammation is reduced, whatever it is, may heal naturally. I hope so.

[Confusedmom]

Thanks, Jennifer. When I told Dr. Lenke about the pain, he gave me a vague response, like "sometimes these things take time to resolve." I told him the pain was preventing me from walking more than one mile at a time and keeping my speed way down, and he said I could try stationary bikes or the elliptical. That's all well and good, but I do need to be able to walk reasonably at some point. Righ now my six-year-old walks faster than I do. I was walking faster/farther on pain meds, but I didn't want to be on those forever, either.

Best,
Evelyn

[jrnyc]

hi Ev
just my guess....with good X rays, i would suspect inflammation...
i have that kind of pain with NO surgery...
and only SI joint injections helped...nothing else i tried gave
any relief...SI shots worked fantastically well...until they
overdosed me and my cortisol was destroyed...so now i cannot get the shots anymore...
i think the NSAIDS are less worry temporarily than any pain meds...
hopefully, once you are further along...like a year out...perhaps the
inflammation will lessen considerably...

that is just my scoli layperson patient guess about what is causing
the pain, since the surgeon says your X rays look good...

hope you feel better soon...
jess...& Sparky