PDA

View Full Version : 4 months, still need pain meds. Getting a little old!



Confusedmom
07-15-2012, 07:24 AM
Hi all,

Thought I would post a little disgruntled update. A grumpdate?!

Anyway, I'm starting to get frustrated here. I am four months post-op, but I still have pain every day that requires prescription meds. In the morning it's back-of-the-shoulder pain, on the right side only. It's right beside the angel wing, and more towards the spine. I get some relief from moving my arm around, but within an hour of getting up I am taking a Tylenol + 1/2 Norco.

Then, when that wears off, by midafternoon, I have the "bear claw" tightness feeling in the mid-upper back. So, another Tylenol & 1/2 Norco.

Then by evening, if I've had an active day (walking and sitting, etc), my left back hip/butt area is very sore, and that's like a nerve pain that can go into my leg. Sometimes I take another Tylenol & 1/2 Norco. Other times I just lay flat for the whole evening.

So, I have called Dr. Lenke's office about the various issues four times. The first time I spoke with Karen, the new nurse. She wanted to talk to Kelly, the old nurse, and get back to me. It has been I would guess over a month now, and NO ONE has called me back, despite me leaving three additional followup messages (one per week, roughly)! I am getting ready to call Naomi, the medical assistant, and lodge a complaint. I don't know. Maybe they want me to see my local doctor, but it seems like they should at least TELL me that! My post-op appointment was at five weeks. Everything looked good then, but of course I was still on oxicontin, lots of Norco, Valium, etc., so I think any problems would have been pretty well masked. Lenke did not want me to have a 3-month appointment, and I believe my 6-month will be with a resident. So--not sure when, if ever, I'm going to get advice on these pains.

When I called Naomi to get a med refill, she said to keep calling Karen so "nothing slips through the cracks." She thought maybe some physical therapy would help, but I need a prescription for that. (Which would require a phone call!!) In the meantime, she has cut me off the muscle relaxants and basically told me she won't be refilling Norco again. So, I'm trying (trying!!) to use as little as I can to get through the day.

Does anyone know when Advil is permissable? I'm thinking six months. Tylenol essentially does nothing for me.

Okay, I think my rant is over. I'm sorry to be negative. I still do feel really greatful for the lack of life-threatening complications and the great correction. But, to all the Lenke lovers out there, the team is not perfect! I would still go back to him again, but I think this forum tends to overly inflate him sometimes. It is still a massive, difficult surgery that has a high potential for complications and a long recovery, no matter who your surgeon is.

Best,
Evelyn

leahdragonfly
07-15-2012, 10:11 AM
Hi Evelyn,

I hear you completely, and definitely can relate. I recall being around 4-4.5 months post-op my original fusion (T8-pelvis) and I still had daily pain and a lot of very significant "aches and pains". I remember being very discouraged and thinking that if that was the final result, it would really, really suck. A wise friend of mine told me that in another 4-6 months I would feel much better, and actually, he was right. I think at 4 months I was so tired of recovering and being restricted by pain, and I started doing more activities and pushing my body more. The body protests but it is completely normal at this point! You can find many other posts from people at the 4-5 month mark who still have similar complaints, and many people answered to say it would get better. Susie*Bee is one who comes to mind, who felt she had a very slow recovery the first year but now several years later reports feeling great.

My doctor allowed me to start taking ibuprofen at 6 months post-op after the original fusion, and it was Wonderful!! I also had a significant improvement at the 6.5 month mark and had many of the aches and pains disappear. It was great, and that day is coming for you, too. By a year I really felt good.

I am currently 5 months post a major A/P revision from L1-sacrum (for broken rods), another 8-hr surgery. I am doing well overall, but like you, I still have significant daily aches and pains. I take tylenol twice a day, and about 3-4 days per week I take one tramadol. It is easy for me to overdo things and get sore the next day, what with working, kids, caring for lots of pets, etc. I have to keep reminding myself that I will feel better, it just takes time. As I recall you have young kids too, so I am sure there are times you have to push your body doing things with them.

I would also be very frustrated by the lack of communication from the dr.'s office. Not ok. I guess all you can do is keep bugging them. I am sure your GP can refill your pain meds in the meanwhile. It is barbaric to think someone can have this magnitude of surgery and be completely done with pain meds a few short months later.

Hang in there and try to remember that things will definitely get better. Take care,

golfnut
07-15-2012, 10:14 AM
Evelyn,
You should rant and rave. You should expect and also deserve a prompt reply. How can one know what course of action to take to aide in relieving one's pain if Dr. Lenke's office doesn't respond? I just don't understand that Karen is not returning your calls. I never had a problem with Kelly. She always answered my questions and in a timely manner (usually less than 24 hours). I still have to sing praises for Dr. Lenke, but it is based entirely on my own experience. If I was experiencing the pain and lack of communication with Dr. Lenke's office staff that you are, I'd be furious to say the least. I'd call and call until you get some answers.

titaniumed
07-15-2012, 01:03 PM
Iíve had ďgrumpdatesĒ before....but not here. he he

Anyway, you know pain can continue on. Hopefully, it tapers down in time. I think that since I hate meds so much, quitting was probably a good thing. I saved my liver anyway. Oh, I had pain, but when you go from 10 to 4, your in heaven.

The bear traps were strong when I was at 4 months and I would lay down for awhile and give those muscles a break.
Sleeping is a necessary thing. If you are tired, or in some pain, lay down.

If you can get into a physical therapy program of some sort, that should help. I didnít start my PT till 8 months, up until that point it was just walking......and sleeping and the occasional grumpdate. (smiley face)

If you look at my Redwoods thread, I was doing short hikes at 9 months, and in the photo you can see the pain in my face.....I was pushing, pushing past the pain. I knew it was part of the healing process, because serious surgery takes a long long time to recover from. I had pain, but kept smiling.

Keep moving, thatís all we can do.
Ed

mabeckoff
07-15-2012, 01:21 PM
So sorry that you are dealing with the doctor's office not returning messages as well as trying to recuperate after such a huge surgery. Everyone gets off of drugs at different times. I do not understand why they would not give you muscle relaxants.

About Advil, I would wait until you get the OK from Dr Doctor. Every doctor has their own time line when it is OK to take advil.

Hope things improve and you can come on this board anytime to rant

walkingmom
07-15-2012, 03:03 PM
Hi Evelyn,

I can understand your frustration because at four months post-op, I was beyond the initial onset of post-op pain, and everyone around me was saying that I looked really great. But I was still no where near saying that I was feeling great. At my 7 mos. post-op appt. I was then given the ok to switch to Aleve.

With you being in Indy, I would suggest contacting your family doctor regarding your ongoing pain. Plus your local family doctor could write your pt script. I didn't start pt until 8 mos post-op and it was slow going with the pt at first. I also started myofascial massage at that time too. Working with a local pt is much more practical than trying to work with the pt in st. Louis. I also used voltaren gel and gabapentin compound cream. Perhaps your family doctor could write scrips for you for that too. I really didn't start feeling better until I was closer to my one year post-op appt.

As hard as it is, keep trying to maintain your walking routine. You might try using hot moist towels and hot showers to help instead of using muscle relaxants. As for me, I felt as if I was trying many different alternatives to help with the ongoing spasms. It was probably a combination of everything along with the passage of time before feeling better.

Hopefully you can find some winning combination of things that can work for you too. Hang in there!
Donna

Irina
07-15-2012, 04:54 PM
Hi Evelyn,

I just want to second what everyone else said. I would be frustrated too if dr's office kept ignoring me. Hopefully your GP can help with pain management. On the topic of physical therapy - if you go somewhere locally, I would try to find somebody who knows at least something about scoliosis. I went to one physical therapist last month three times and dropped it. It was waste of my time and money (deductible). The guy didn't know a thing about scoliosis and I was an interesting case study animal for him. I felt way worse after he tried to massage my spine and after three times run away because the guy didn't know what he was doing.

jrnyc
07-15-2012, 05:03 PM
hi Ev
just a thought...
it might be helpful to find a pain management doctor NOW...
so you will not be left in the lurch when there are no more prescriptions
coming from the surgeon's office...
also, possible that if you go to a pain doc, he or she could get thru
to Lenke's office easier...
personally, i would be really upset if i were 4 months out and not
getting return calls....
it is a really big surgery and 4 months doesn't sound that far out...

hope you feel better everyday....

jess...& Sparky

Doodles
07-15-2012, 05:43 PM
Evelyn--
I'm sure it isn't too heartening to hear that the pain can go on a while to say the least. I think Lenke's office cut me off at 6 months from pain meds. I went to the my local doctor for it from then on. I think I was doing aqua pt at about 4-6 months which did help--at a hospital where the temp of the water was about 92 degrees and it felt really nice. Also, a bit more land pt followed at 6 months. I now do microfascial massage which I really like. Whoever you see--doctor, pt people etc. bring a copy of your x-rays. I know my pt guy at 6 months was totally in awe. He'd never seen anything like it in his life and was very careful with the kinds of exercise he had me do.
Is Kelly gone from his office? That's a shame. If there's a new one I'm sure she has a pretty big learning curve. Janet

Susie*Bee
07-15-2012, 06:18 PM
Leahdragonfly has a very good memory! First, I can feel your frustration about not getting your concerns addressed. I'm so sorry! Hopefully you'll hear from them soon. Yes, I was one of the "tortoises" who took longer to heal, but that's ok. I stayed on the fairly heavy pain meds and they slowly weaned me off of them around 5+ months. I was taking Norco/hydrocodone, gabapentin, and valium. After I weaned down on those, I was switched from my surgeon to my family doctor for pain control and he had me take tramadol as needed. I am back on valium/diazapam all the time for severe leg cramps which have at times caused ALL my leg muscles in both legs to cramp at the same time. I just got home from a trip 2/3s of the way across the country, and even with taking diazapam prophyllactly (which usually keeps the cramps in check) I had 15 leg cramps during the night one night (and I get out of bed to straighten up) and fainted from one severe one, causing quite a bump on the head, 2 or 3 broken toes, a bumped/scraped elbow, and a very sore back. (Plus my husband was saying "why did you do that?? How can I get you up??" and I was answering "I can't get up, just throw me my pillow, leave me alone, I just need to rest..." You can maybe visualize the scenario. Aughhhh!

Anyway, sometime after a few or so months after surgery I think it might be time to have the medication baton passed on as needed to either your own doctor or a pain management doctor, especially if you're having problems getting through. My surgeon's nurse had worked on the weaning with me first, so that was good. It was my family doctor that suggested the switch. He was very concerned with how I was doing and wanted me as comfortable as possible without getting addicted to anything, and he was readily available and easy to see or call--15 minutes away. My surgeon was 2 hours away. Best wishes. Remember too that this is a journey and we're in it for the long haul. And it makes us all a lot stronger in so many ways! You're doing great. Right now you're using coping mechanisms-- sharing with us. :)

naptown78
07-15-2012, 06:35 PM
Don't get discouraged! I experienced pain to various degrees and in various locations for at least the first year or longer after each of my surgeries. It really is a long recovery, but you have gone through the worst part and survived. You will feel better as each month goes by.
I don't understand why Dr L's office is not responding to you though...how frustrating for you.

My only advice for you is to remember that time is your friend. I hope you feel better soon ;-)

golfnut
07-15-2012, 09:11 PM
Evelyn,
I looked back at my journal that I kept after surgery and at 4 months I still had various aches. I doubt that it is unusual and I'm certain it will get better, however, Karen should still return your calls. I would be persistent if I were you. I didn't start any formal physical therapy until I was a year post-op, but Janet gave me some exercises that I did on my own at home. I also did a lot of movements in the pool at the Y which felt wonderful in the early months of recovery (3 months & currently)

hasteffen
07-15-2012, 09:46 PM
Hi, Evelyn. I was having the same issue and then called Naomi and my phone call was returned within a couple of hours. I think the transition from Kelly to Karen has not gone as smooth as they would have liked. It is frustrating. Hang in there. I will definately be praying for you. At my consult, Dr. Lenke told me that around 4 months post op I would be wondering why I had the surgery. He said most patients hit that wall and start to rethink/regret surgery but to remember that it will get better! Do you have a local doctor following you? Maybe even your GP can help with a pain med if you still need it... I would be setting up an appointment now though before you run out. How are the kids?
Best,
Heidi

JenniferG
07-16-2012, 05:03 AM
I don't know how you mothers cope with kids after this huge surgery. I know when I have my three granddaughters, I am lifting, bending, reaching and running after them all day long. Does it help to lie down during the day? I was still getting a 1-3 hour sleep every day right up to about 3 months. I see you're walking daily and I think that's helpful. Four months is still early but I totally understand the need to be free of pain and feel normal again. It will happen!

I hope you determindly seek answers to your questions from Dr. Lenke's office.

Confusedmom
07-16-2012, 11:11 PM
Hi Everyone,

You are all the BEST! Really. I want to thank each one of you individually because I got something out of each and every one of these responses.

So, update: When I called for the fourth time late last week, I did say on my message that it was my fourth call and I would, umm, appreciate a response. So, today Kelly called!! I do not want to slam Karen, as the times I've talked to her in the past she has been very helpful. However, I do think they're having some transition pains over there. Kelly said as much.

So...she says my ongoing left side hip/butt pain could be the iliac screw. If it gets worse, they will do trigger point injections. Ultimately, it could be removed at two years post-op, but it's way too early to tell if that will be necessary. She said she would forward my issues to Dr. Lenke and see if there is anything specific he wants me to do. But, she said most likely it is just a matter of being patient, continuing to walk, take pain meds as needed (she didn't think I'm taking too much), and after six months we can think about anti-inflammatories. She thought it was too early for PT. Also, she gave me her new phone number. PM me if any Lenke patients want it.

Also, last night I put my foam topper, which had been on the sofa, on top of my memory foam bed. That seemed to help the shoulder somewhat.

So, thanks to you all, Kelly, and foam (nod to Ed), I am feeling better (well, mentally anyway). So, thank you, thank you, thank you!!

And SusieBee, those leg cramps sound worrisome! Have you had your potassium levels, etc., checked to make sure it's "just" your back. I'm sorry for your fall!! Kudos to you for keeping a sense of humor about everything.

Best,
Evelyn

P.S. I will take all of your advice and work on a local doc for pain mgmt.

Confusedmom
08-08-2012, 09:41 PM
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
08-09-2012, 12:05 AM
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
08-10-2012, 06:15 AM
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
08-14-2012, 07:25 PM
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
08-15-2012, 06:51 AM
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
08-16-2012, 11:16 AM
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
08-16-2012, 02:33 PM
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
08-16-2012, 03:37 PM
Congrats on being off prescription meds!

Susie*Bee
08-25-2012, 03:45 PM
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. :D 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
08-28-2012, 11:17 PM
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
08-29-2012, 08:19 PM
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
10-22-2012, 12:03 AM
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
10-22-2012, 12:10 AM
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
10-23-2012, 09:55 PM
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
10-23-2012, 10:28 PM
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

Confusedmom
10-24-2012, 10:42 AM
Thanks, Jess. I think (hope) you are right. NSAIDs do help. I may try to get an injection, too. I'm also wondering if this could be related to the pelvic fixation. Seems like a lot of people have trouble with that. I am just hoping it's not something permanent impinging on a nerve. Anyway, I appreciate your thoughts.

Evelyn

loves to skate
10-24-2012, 08:35 PM
Evelyn,
I hope your pain eventually goes away. My Doc told me to wait one year, then he told me to wait another year. I still have pain and have recently had two cortisone shots in my SI joint. My pain management Doc suggested a spinal stimulator implant, but I told him if the shots don't work, I would rather have my iliac screws removed before I have any more implants. I no longer can take NASIDS because of kidney damage, but neurontin helps with the nerve pain and I take tylenol and or Tramadol when needed. If it hurts you to walk, it could quite possibly be inflamation in your SI joints. I hope your pain subsides before you have to resort to anything more drastic. Not everyone comes out of this surgery pain free, but give it more time. You are not alone.
Sally

Confusedmom
10-30-2012, 10:30 PM
Sally,

Thanks so much for responding. Does Dr. Rand think your pain is from the screws? Does it hurt more when you walk? I read some past threads on this, and it seems like this is a somewhat common problem.

I looked up your photos again. You look so graceful skating. Are you still doing it? I'd be afraid of falling! Maybe I'll get over that, though. I'm want to get back to step aerobics eventually. (Probably need to be able to walk quickly first, though!)

Thanks again,
Evelyn

loves to skate
10-31-2012, 06:42 PM
Hi Evelyn,
Dr. Rand thinks that I still have pain because the nerve roots were compressed for so long probably causing permanent damage. I tend to agree with him, but I am almost convinced that a lot of my low low back pain is caused by the iliac screws. When the weather changes drastically, I get a deep ache in the iliac area as in when hurricane Sandy started to go past our area of N. Carolina. No, it does not hurt more when I walk or when I exercise. For me, I feel better if I am moving. Maybe I just forget about the pain then. I don't skate here in NC because the local rink does not cater to adults, so yes, I would be afraid of falling with young kids skating near me. Instead, I line dance and do Zumba once a week. I walk some, but not a lot and I ride my bicycle some. As you can probably tell from my signature, Dr. Rand operated again two years after my original surgery and removed some more bone he thought might be causing my pain. The surgery was a piece of cake, but not much improvement with the pain.

If you have more questions, feel free to ask.
Sally

titaniumed
11-01-2012, 01:07 AM
Hi Evelyn

With recovery in 50 yr old adults taking 1-2 years for full fusion surgery, at 7 months what can a surgeon say? If its not major alarming pain, all they and we can really do is to wait some more....recover and heal some more.

With Sally mentioning about her increased pain with the hurricane passing through, I also have had some major bear traps from a weather system passing through here on the west coast. Having my home state of NJ destroyed didnít help, but it seems that every fall around this time, I have the traps, the gripping in my thoracic spine. Iím coming up on 5 years and every October, it seems to flare up once again. All summer long, I have no pain.

Iím wondering if this might be affecting you? This seasonal change many of us feel?

Its October and November ďbear trapĒ season again. Sigh...

Ed

Confusedmom
11-01-2012, 10:49 PM
Thanks Sally & Ed,

I know I am being the hugest wimp and also extremely impatient. I should mention that I am very grateful the pain is not worse. I know many people have it much, much worse. I am being a perfectionist, I guess, because I wasn't in pain before the surgery (at least not much and not consistently). Linda is right when she says people with the least pain going in are the least happy with the outcome. I am not unhappy, just undecided. I won't be happy with the surgery unless/until I can get back to at least my pre-op comfort level. I really am starting to think it's the pelvic screw giving me issues, though. My back pain is pretty much gone except just to the left of the sacrum and sometimes in that leg when exercising. At least if that is the source, I can get the screw out eventually. In the meantime, I am working hard at PT and trying (okay, somewhat unsuccessfully) to be patient!! Thanks again.

Best,
Evelyn

titaniumed
11-02-2012, 09:41 AM
Donít work too hard at PT. Recovery is a slow climb uphill, stay off the steep slopes for now.

It does continue after the 1st year, the fine tuning and building of the soft tissues.

I almost quit skiing because of this. I had to keep pushing, slow and steady.

At 2 years I was done with my recovery.

I donít think you can judge final outcome for awhile....it takes a long time to heal.

My traps are gone, the weather front has passed.

Ed