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View Full Version : 5 mos Post Op - still having problems....Normal?



LaurieAnne
05-25-2011, 08:59 PM
Hi all,

I am a little over 5 months now but am still dealing with troubling sacrum and now upper back pain. I have had this since about 7 weeks post op as my surgeon told me at 6 weeks I could do some bending as long as it didn't cause pain and a lot of walking. Well I was numb so it felt okay to bend and walk a lot at the time. Anyway, since surgery my hips and sides of my thighs have been so tender and sore. Anyone else experience this? Also my butt bones (sorry) ache a lot when I stand and I get frequent sharp pains in various areas of the fusion and into my sacrum. Normal? I have been in phys ther since mid-March but it's really providing little relief. We are just using heat, tens unit (muscle stim) and ultrasound on my hips. I guess what I am really worried about is non-union. My back always feels stiff and aches from the time I get up in the morning until I go back to bed at nite. The only relief is laying down. I have talked to my dr several times and they refer me to more phys ther. I do have pain where the rods end at L3 and in my sacrum. It was getting more painful the more active I was so I stopped the structured walking program (walking 1-2 miles per day). I'm hoping to start some pool therapy next week. Most days I'm up and running around for the better part of the day, and only find time to lay down after work to get some pressure off the spine. I know I'm only 5 months...it's just so hard to not get discouraged as recovery is taking so long. I guess what I really want to know is whether my experience is normal and what non-union looks/feels like. When does it get better?

leahdragonfly
05-25-2011, 09:43 PM
Hi LaurieAnne,

I had a different area fused than you but what you describe is very similar to how I felt at 5 months. I still had significant daily "aches and pains" and had to lie down in the evening on my heating pad. I was uncomfortable in bed and would awaken several times at night with my back frozen in one place. I even was needing to take tylenol 2-3 x/day and 1/2 tramadol 1-2 times/day.

I am now at 7 months and I am doing well. I had a huge and sudden improvement at 6.5 months. One thing that seemed to help a lot was at 6 months I was allowed to take NSAIDS, and I started taking 400 mg ibuprofen in the AM which helped a lot. Now I typically take tylenol once a day and sometimes ibuprofen, no more tramadol. I am definitely ready to lay on my heating pad by bedtime still.

As the wise here told me, you are still early in recovery and will continue to take make significant improvements. I too remember being really worried at 5 months that I had a non-union or other problem in my lower back, but my x-rays were perfect, and now that area has made improvements. I know you will too. Try to listen to your body and not over-do things.

Take care,

golfnut
05-26-2011, 07:18 PM
Laurie,
Dr. Lenke was also my surgeon, as you probably know. I won't be 5 months until June 5 and will see Dr. Kelly on June 22nd for new x-rays. Every single time I feel a pain close to my spine I worry about non-union. When I lay down, I almost always feel a slight pop which doesn't hurt at all, but worries me. I am not teaching this semester so I haven't been tested with going back to work as you have. Most days I will get off my feet for about 15 minutes which gives me relief. I have had 3 days of not taking any Tylenol, but most days I'll take one or two. My back feels somewhat tight and stiff, but doesn't bother me 24-7. I have occasional achiness in my left ribs and sometimes on the top of my hip bone or the small of my back on the right side. I am walking a lot every day which doesn't bother my back at all. I try to use the pool at the Y once or twice a week. I still have not been given permission to bend (from Kelly or Janet-Dr. Lenke's PT), so I have avoided it just to be cautious. Dr. Lenke told me I could chip and putt when I saw him at 10 weeks which involves some bending, but I decided to play it safe. I'm much older than you and was fused T4-sacrum which I'm sure makes a difference in what is allowed. When do you go back for your next x-rays? I'm not sure if the x-rays will even show if there is fusion or not. I've heard that only a CT scan will show it and I don't think we will have that done even at 1 year. We saw Jersey Boys 2 nights ago and we were sitting in really cushy seats, however, it was still uncomfortable for me. I feel much better when I'm moving.

golfnut
05-26-2011, 07:28 PM
Laurie Anne,
I forgot to mention that I looked at your 5 month post-op pictures. Your back looks fantastic!

LaurieAnne
05-26-2011, 08:18 PM
Hi Karen,

It's great to hear from you and it sounds like you are doing well! I go to see Dr. Kelly on June 22nd too. That will be a few weeks over my 6 month mark. I sure wish I felt better in motion than lying down. It's been so hard not being active. I miss walking reguarly and doing aerobics & weights. *sigh* I sure hope it gets better soon! I just try to take it one day at a time and pray for patience. I too see Janet for therapy. We do heat, tens unit (muscle stim) and ultrasound therapy on my sacrum/gluteal muscles which have felt sore and bruised like since surgery. Anyway, it's encouraging to hear it gets better for other people. I look forward to the day when it all turns around for me. I'm suprised I didn't bounce right back as I expected but I guess it just goes to show you really can't always predict what will happen. I pray you continue to do well and are back to golfing in no time :)

LaurieAnne
05-26-2011, 08:28 PM
Hi LaurieAnne,

I had a different area fused than you but what you describe is very similar to how I felt at 5 months. I still had significant daily "aches and pains" and had to lie down in the evening on my heating pad. I was uncomfortable in bed and would awaken several times at night with my back frozen in one place. I even was needing to take tylenol 2-3 x/day and 1/2 tramadol 1-2 times/day.

I am now at 7 months and I am doing well. I had a huge and sudden improvement at 6.5 months. One thing that seemed to help a lot was at 6 months I was allowed to take NSAIDS, and I started taking 400 mg ibuprofen in the AM which helped a lot. Now I typically take tylenol once a day and sometimes ibuprofen, no more tramadol. I am definitely ready to lay on my heating pad by bedtime still.

As the wise here told me, you are still early in recovery and will continue to take make significant improvements. I too remember being really worried at 5 months that I had a non-union or other problem in my lower back, but my x-rays were perfect, and now that area has made improvements. I know you will too. Try to listen to your body and not over-do things.

Take care,

Hi Gayle,

Thank you for your post. It is so helpful to hear that others have had similar experiences as it gives me hope that things are ok just progressing slower than others. I too come home from work each day and lay on my heating pad usually for the rest of the evening. It gets old but nothing else makes it feel better...at least for now. I'm going to try water therapy next week. I've signed up for a back aid class at the YMCA. Did you ever do any water therapy? Did anything else help your pain besides tylenol, tramadol and NSDAIDS? I haven't been cleared to take NSAIDS yet and tylenol does nothing for my pain. I still have pain meds and muscle relaxers from surgery but I rarely take them...I just hate taking meds, esp pain meds. Everyday I tell myself if I can just go lay down I won't need them, and this usually works but sometimes I can't get home to lay down. How did you feel about pain meds? Any advice? Thanks again and hope things continue to get better for us all!

naptown78
05-26-2011, 08:47 PM
Hi Gayle,

Thank you for your post. It is so helpful to hear that others have had similar experiences as it gives me hope that things are ok just progressing slower than others. I too come home from work each day and lay on my heating pad usually for the rest of the evening. It gets old but nothing else makes it feel better...at least for now. I'm going to try water therapy next week. I've signed up for a back aid class at the YMCA. Did you ever do any water therapy? Did anything else help your pain besides tylenol, tramadol and NSDAIDS? I haven't been cleared to take NSAIDS yet and tylenol does nothing for my pain. I still have pain meds and muscle relaxers from surgery but I rarely take them...I just hate taking meds, esp pain meds. Everyday I tell myself if I can just go lay down I won't need them, and this usually works but sometimes I can't get home to lay down. How did you feel about pain meds? Any advice? Thanks again and hope things continue to get better for us all!

I just wanted to pop my two cents in...when I read your initial post, I was thinking to myself that all the things you are feeling are so normal. It might not feel that way to you because you are in the moment. But from someone looking backward on my own experiences...I remember feeling all those same things. You are not slower than normal, you are normal. Don't forget how huge this surgery is...and the recovery takes many months, even years. Everything you are having trouble with, I had trouble with...and it all went away. Keep your chin up ;-)

LaurieAnne
05-26-2011, 08:53 PM
Hi Kristy,

Thanks for the reassurance! I guess I have gotten the impression from my physical therapist and surgeon's assistants that most people are further along than me by now but it's so great to hear I'm actually normal, so thank you for that! It really helps put my mind at ease about things :)

golfnut
05-26-2011, 09:05 PM
Laurie Anne,
I am sure you are right on target with your recovery. I'm glad you are seeing Janet for PT since Dr. Lenke recommends her and doesn't really trust anyone else. Unfortunaely, she is "Out of Network" for my insurance but will give me exercises for a local PT when I am 6 months post-op. My appointment is 9:10 on the 22nd. What time is your appointment? Hopefully, we can meet. I will be looking for a tall, slim gal with a straight back! I was happy to meet Eveylyn (Confused Mom) at my last appointment.

LaurieAnne
05-26-2011, 09:14 PM
Karen,

My appointment time is 8:50 on June 22nd but I will be there by 8:00 or 8:15 for xrays. That would be great if we could meet up! I can hardly wait to get past the 6 month mark...then a year! It will be so awesome to crawl around and play with my niece and be able to hold the new babies that will be coming (both my sisters-in-law are due in November)! It's gonna b a great year ~ and I really want to be on track. Just the thought of having to go through surgery again is too overwhelming to think about so I will stay positive. Thanks again and I will look forward to seeing you on June 22nd :)

LaurieAnne
05-26-2011, 09:40 PM
One more thing - have you all experienced recurring sharp pains and chronic itching "inside" the incision? Is this just nerves waking up? How long will it last? Does anything help? It is REALLY annoying!! ~ Thanks!

golfnut
05-27-2011, 06:14 AM
Laurie Anne,
I doubt if there is a single person who has gone through this surgery who doesn't worry about non-union. I've had a smooth recovery (I always have to add, so far, or I think I'll jinx myself) and still worry about non-union. Dr. Wolpert's book said that non-union is more common in older patients (that would be me) and longer fusions (also me) Since I wasn't braced, I wonder if I have accidentally moved too much. I am walking a lot and I know that it's supposed to help with the fusion, but yesterday I even worried that maybe I slightly twist when walking. I asked Kelly about bracing before my surgery and she said that Dr. Lenke feels your muscles get stronger sooner and that the instrumentation and the methods are better now giving you an internal brace, so I guess I shouldn't worry so much.

Since you have over 3 weeks before your appointment, I would suggest calling Kelly so that you feel more relieved about your aches and pains. I have had a few sharp pains,too, but they only last for a second or two. I am assuming it's nerve endings. I'll see you on the 22nd.
Karen

pilar
05-27-2011, 04:03 PM
I think your aches and pains are still consider somehow normal at 5 month post op. I am almost 6 month post op and all I can say is that after all I've been through, I feel accomplished. I still have pains... sharp pains and needles... but I know I have to be pacient and that eventually I will not feel anything anymore.
I gotta say... you look amazing!! your 5 month pics are stunning! I didn't get as much correction as you, and my back doesn't look like yours at all... but I am still grateful and happy with my results. You have a great cosmetic correction! congratulations! and hopefully, your pains will subside pretty soon. Don't get discourage... we went through a big change!
Pilar

JenniferG
05-27-2011, 04:14 PM
Your scar has faded beautifully for 5 months Laurie Anne, and your back looks amazing.

golfnut
05-27-2011, 07:38 PM
Laurie Anne,
Are you putting anything on your scar which has caused it to be nearly invisible? My husband put vitamin E oil on it for a while, but I haven't done anything recently. Any tips?

LindaRacine
05-27-2011, 10:03 PM
Dave Wolpert will be delighted to see that he's been promoted to Dr. :)

Laurie Ann...

I just learned something new recently. It turns out that a lot of people who have been fused to the sacrum end up with greater trochantary bursitis. I found out about it, because I have it on the right side. The reason I mention it is that my right hip and thigh were very sore and sensitive to the touch. There are trigger points that really hurt (like a bruise) when anyone pressed on them. I had a trigger point injection last week, and that helped a lot.

Your physical therapist should be able to tell if you have the same issue.

I have been water walking since my very early postop days. I do half an hour, at an all-out clip, 3 to 4 days a week. There's no way of knowing if it helped me, but it definitely made me feel like I was doing something constructive. My Y has a warm water pool, which really made it inviting.

My heart goes out to you. It's SO hard to be having a difficult recovery and to hear that some of us who had surgery more recently than you, are doing better. Please know that if there is something wrong, Dr. Lenke will get to the bottom of it. And, know also that the rate of recovery is so different for all of us. Hang in there... it will get better.

Regards,
Linda

LaurieAnne
05-27-2011, 10:18 PM
Laurie Anne,
Are you putting anything on your scar which has caused it to be nearly invisible? My husband put vitamin E oil on it for a while, but I haven't done anything recently. Any tips?

Karen,

The only thing I used was vitamin E oil I bought from walgreens but I put it on morning and night and fairly thick coating. I am still applying but now only at night as the oil can stain clothes sometimes. I was suprised that's all Lenke's office recommended. I thought for sure they'd suggest something like mederma but it's amazing how well the vitamin E oil works. I think the key is putting it on frequently.

LindaRacine
05-27-2011, 10:31 PM
I don't know about others, but the scar from my 1992 surgery is almost invisible, and I never put anything on it. It's possible that things like Mederma may make the wound heal faster, but I wonder if it makes any difference in the long term.

golfnut
05-27-2011, 10:32 PM
Oops! David Wolpert holds a MBA degree. I accidentally elevated him to a PhD.

golfnut
05-27-2011, 10:36 PM
Laurie Anne,
Kelly had recommended vitamin E oil to me as well, but I stained a couple of shirts and quit using it. My scar is much more visable than yours, so I am going to start using it again-at least at night.

LaurieAnne
05-27-2011, 10:52 PM
Dave Wolpert will be delighted to see that he's been promoted to Dr. :)

Laurie Ann...

I just learned something new recently. It turns out that a lot of people who have been fused to the sacrum end up with greater trochantary bursitis. I found out about it, because I have it on the right side. The reason I mention it is that my right hip and thigh were very sore and sensitive to the touch. There are trigger points that really hurt (like a bruise) when anyone pressed on them. I had a trigger point injection last week, and that helped a lot.

Your physical therapist should be able to tell if you have the same issue.

I have been water walking since my very early postop days. I do half an hour, at an all-out clip, 3 to 4 days a week. There's no way of knowing if it helped me, but it definitely made me feel like I was doing something constructive. My Y has a warm water pool, which really made it inviting.

My heart goes out to you. It's SO hard to be having a difficult recovery and to hear that some of us who had surgery more recently than you, are doing better. Please know that if there is something wrong, Dr. Lenke will get to the bottom of it. And, know also that the rate of recovery is so different for all of us. Hang in there... it will get better.

Regards,
Linda


Linda,

Thank you for your kind words. It is hard but I am trying to stay positive and just take it one day at a time. I am planning to start a back aid class next week so I hope this will bring me some relief. It is challenging not to compare your recovery with others on this site and feel like you are doing something wrong because you aren't recovering as quickly but I know our bodies are all different and heal at different rates. I have notified Dr. Lenke about the issues I'm having and he said for now to just work with his physical therapist so I plan to do this until my appt in late June and if it's not better then I would like to see what else can be done. Thank you for your thoughts and encouragement. I'm so grateful for this site! It's here we realize we aren't alone in this.

Take care,
Laurie

LindaRacine
05-27-2011, 11:20 PM
Laurie Anne...

In the meantime, do ask your PT about the possibility of greater trochanteric bursitis.

Linda

Radiogirl
05-28-2011, 11:15 AM
Hi Girls! I too had Dr Lenke do my surgery and it was just over one year ago! I went back this week for my one year follow up. I am so happy to report that he gave me the "all clear" to do anything I want! I started back to gentle yoga at four months post. Then went to more strenuous yoga at about six months. This week he gave me the clear to try standing on my head even! And backbends, well he said that will be difficult but I can try if I want! Biking, skiing, anything! He said not to baby it! I'm sooo exited! BUT....I do want to tell you all that everything you have descibed, Laurie Ann, is so normal. I had all of those same feelings at 5 months. And now at one year it is much better...but not normal feeling. I still have the numbness and the tightness...but that stinging/bruised feeling in my thighs and read have been long gone. I met two ladies there this week at my followup that were there for their 3 year followups and they BOTH said it gets even better after year one! So....you are still so early in your recovery. You will be fine at your one year mark. Dr. Lenke is THE BEST! (in my opinion). Have faith that you went to someone that really knows his stuff. I traveled from Cleveland (where we have world class hospitals/Cleveland Clinic) just becuase I have so much faith in him. I am soooooo happy I did. On the fusion question, you cannot see it on the x-rays, but he said he has no reason to believe I have not fused. Laurie Ann....it really only gets better from here. Feel free to email or PM me if you want more info.

Best to you all!
Laura

golfnut
05-28-2011, 12:27 PM
Laura,
Thanks so much for posting and giving encouragement. It means so a lot coming from someone who has been through the long recovery and especially since you had the same surgeon. Yes, I feel that Dr. Lenke is the best as well!

Hang in there, Laurie Anne. You will be posting just as encouraging of a report as Laura at one year.

titaniumed
05-28-2011, 12:42 PM
Hi Laurie Anne

I too was worried about a non-union and healing takes a long long time. I’m glad that I have my threads and posts here, otherwise I would have no record of what happened.

I have posted here many times that I felt that my recovery improvement rates ran approx 10% per month. At 5 months, that would have put me at 50%. You still have a while to go on this, and many of the aches and pains you have now should go away in time. Scoliosis surgery recovery is an exercise in patience.

Your pics look great. Nice symmetry.
If you look up this word, you will see that it means, “beauty based on or characterized by such excellence of proportion”.

Is this our dream? For many, it is.
Hang in there.

Ed

Doodles
05-28-2011, 01:08 PM
Laura--
Congratulations on such a fantastic report. You are doing so well. I'm still mystified by those who can do yoga however. I did pre-surgery but now there's really no way--I've tried! I can do other stuff but that was so good for core. Pilates machine was a very expensive bust too. Oh well. It's encouraging to hear how well you are doing! Janet

Lotta51
05-28-2011, 01:49 PM
Your photos speak for themselves. It is just a thing that takes time. I am feeling the same way as you. Everyone says how great I am doing, but from the inside it seems like recovery is slow. I am post op almost 7 months. and still having discomfort this was a repair of failed rods which caused scoliosis. Please don't get discouraged. I do believe the ibuprophen when allowed which with me is at 6 months do to fusing solution. I take no meds and try to stay away from them as much as possible, but I live in the south and the storms seem to be leading me to break down and take some Ibuprophen. The lower ribs feel like they are coming out through my skin and the shoulders have pain. I still tilt a little to the right but stand straight. My left rib area bulges out. I don't hit my head into things any more and can swallow standing up plus went from 5' to 5' 5". I am 60 yrs old so to me you look wonderful. Keep up the good work!!! T2 to sacral complete recontruction.

jrnyc
05-28-2011, 03:47 PM
hi Janet
i think yoga is different for those not fused to pelvis vs/those fused to sacrum/pelvis...
if you check the posts of patients doing yoga, you will find they were most often not fused all the way down to pelvis...

i know TiEd is incredible, but i doubt, with his long fusion, that even he could do a backbend!

jess

LindaRacine
05-28-2011, 10:28 PM
hi Janet
i think yoga is different for those not fused to pelvis vs/those fused to sacrum/pelvis...
if you check the posts of patients doing yoga, you will find they were most often not fused all the way down to pelvis...

i know TiEd is incredible, but i doubt, with his long fusion, that even he could do a backbend!

jess

Hi Jess...

Actually, I don't think any of us is fused to the pelvis. The bolts we have in our pelvises are there for stabilization, but fusion. So, it's essentially the same as being fused to the sacrum.

--Linda

jrnyc
05-28-2011, 10:35 PM
OK..fused to sacrum with "pelvic fixation"
i just call it fused to pelvis, cause to me it seems pretty close....

i have noticed that those who report more active yoga, with more bending, are not fused to the sacrum, with pelvic fixation....most seem to be fused to L3

i doubt those with long fusions or those fused into low lumbar can do back bends....
just a guess
i am not fused...yet...& i am in too much pain to do yoga!

hope you are enjoying the wkend, Linda, & feeling better each day....

jess

LindaRacine
05-28-2011, 11:01 PM
Sorry, I was commenting on "fused to pelvis vs/those fused to sacrum/pelvis."

jrnyc
05-29-2011, 02:40 PM
is OK...i just economize the words..
in reality, i know no one is actually fused to the pelvis...
i know it is sacrum, with fixation at pelvis...

i also know it is hard to do back bends when your back basically cannot bend!

on a happy note, my SI joint injections are still workng...i am thrilled, as last time the relief only lasted 3 weeks...i am now going on 6 weeks and still have 85% less pain in lumbar!!

hope you are doing well, Linda...

Sparky and i wish you a great wkend....
woof

http://i1085.photobucket.com/albums/j439/jrrnyc/pillow2.jpg

JenniferG
05-29-2011, 06:28 PM
So glad for you Jess. Long may it last.

LindaRacine
05-30-2011, 12:00 AM
That's great Jess. Hope it lasts.

I suspect that most people who have long fusions are unable to do backbends. I never could. I could never figure out how I could do a standing backflip, but could never achieve a backbend.

LaurieAnne
05-30-2011, 12:09 PM
Dave Wolpert will be delighted to see that he's been promoted to Dr. :)

Laurie Ann...

I just learned something new recently. It turns out that a lot of people who have been fused to the sacrum end up with greater trochantary bursitis. I found out about it, because I have it on the right side. The reason I mention it is that my right hip and thigh were very sore and sensitive to the touch. There are trigger points that really hurt (like a bruise) when anyone pressed on them. I had a trigger point injection last week, and that helped a lot.

Your physical therapist should be able to tell if you have the same issue.

I have been water walking since my very early postop days. I do half an hour, at an all-out clip, 3 to 4 days a week. There's no way of knowing if it helped me, but it definitely made me feel like I was doing something constructive. My Y has a warm water pool, which really made it inviting.

My heart goes out to you. It's SO hard to be having a difficult recovery and to hear that some of us who had surgery more recently than you, are doing better. Please know that if there is something wrong, Dr. Lenke will get to the bottom of it. And, know also that the rate of recovery is so different for all of us. Hang in there... it will get better.

Regards,
Linda

Linda,

How did you PT diagnose the greater trochantary bursitis? What kind of treatment is used or recommended? What worked for you? How long before it gets better? Although I am not fused to the sacrum I suppose it's possible I could still be experiencing this. I looked it up and I identify with a lot of what it talks about. I see my PT Wed so I will definitely ask about this. Were your upper gluteal muscles / sacrum really tender as well? Is this also part of the bursitis? Sorry for the nearly 20 questions ~ just hoping to get some of the discomfort relieved. Thanks for all your posts!

jeneemohler
05-30-2011, 12:23 PM
Jess, I am SO glad your injections are working/lasting this time. What a relief!

LindaRacine
05-30-2011, 12:42 PM
Linda,

How did you PT diagnose the greater trochantary bursitis? What kind of treatment is used or recommended? What worked for you? How long before it gets better? Although I am not fused to the sacrum I suppose it's possible I could still be experiencing this. I looked it up and I identify with a lot of what it talks about. I see my PT Wed so I will definitely ask about this. Were your upper gluteal muscles / sacrum really tender as well? Is this also part of the bursitis? Sorry for the nearly 20 questions ~ just hoping to get some of the discomfort relieved. Thanks for all your posts!

Hi Laurie Anne...

I don't know or, at least I don't remember, how the PT diagnosed it. I do know that there were a lot of things that I couldn't do. For example, when I lay on my left side with my left leg bent, I could hardly pick my right leg off the bed. However, if I switched sides, I could pick my left leg up almost to 90 degrees.

My upper glute was definitely tender, and my sacrum was painful when I sat for more than a few hours (and still is somewhat).

The injection worked immediately. The physiatrist injected the steroid, then started to massage the area. I just about jumped off the table, expecting it to hurt, but then realizing it didn't hurt any more. (If someone massaged that area before the injection, I truly would have hit the ceiling from the pain.) When I got home, I tried the exercise I mentioned above, and was able to easily do it. I will say that the trigger point tenderness returned the next day, but not the other sensitivity and pain. The physiatrist noticed that the bursa felt like it was calcified, so she wasn't sure the injection would work.

Hope that you have it and can get the same relief that I did.

Regards,
Linda

jrnyc
05-30-2011, 03:15 PM
thanks to all who sent good wishes...
i hope the shots continue to last as well...they can be redone...if/when needed

jess

SusanS
05-31-2011, 02:35 PM
Laurie Anne, thanks for starting this. It answered lots of my questions as well. I am so impressed that you are able to work at this point. I'm having lots of the same issues I'm reading here and was a little concerned about them, so it is good to realize these are 'normal'. I'm still having lots of nerve pain in my right leg, hopefully when the removed the screw impinging on the nerve root it didn't leave any lasting damage, but I am wondering how long it will be before I begin to see some improvement there.

Linda, I'm also having the bursitis issue, as well as something called IT band syndrome all from my right hip, so my body is feeling numb and/or painful from my right iliac crest to my ankle. I have unrelenting leg swelling ever since surgery in January. Does anyone else have trouble sitting? I can't sit for too long before it really fires up that nerve pain. I went in for a shot in the hip joint but the physiatrist said my pain levels were too high for him to attempt it at that point so I'll do it later this week. As an aside, he put me on Cymbalta for the pain but it didn't touch it and I kept falling asleep on it so I quit it after I nearly nodded off behind the wheel one day.

To top it all off I am sure I have an incisional hernia at the site of the anterior incision. I'm just tired of feeling so torn up! Because of my right leg issues I was only able to lie on my left side, but now with this hernia I can't lie of my left side either now. Sitting is uncomfortable, so I spend my days either standing or lying on my back, but either one of those is still uncomfortable too. I just can't wait until I feel comfortable again! But each day is a little better so I know that day is coming. Knowing that i'm not alone in going through this, knowing you all are or have come through so well is a real reassurance.

In the hospital my brother made me a sign with that famous affirmation "Every day in every way I am getting better." At first it made me laugh (remember Stuart Smalley on SNL?) but I have to say I've really responded to that and feel it is coming true.

Ed, I hope your knees are getting better. You've been such a great source of support. Positive thoughts of healing to all of you!

Sue

SusanS
06-01-2011, 09:20 AM
Hi Laurie Anne,

I just re-read my post in response to yours and it was sort of all about me. Sheesh! Sorry. In more direct response to your questions though... my right hip and thigh, even down past my knee, has been very tender and sore, they told me it is that bursitis and IT band syndrome and recommended PT. I've got tons of sharp pains and achy pains in my back at various spots, and I also have the itching on totally numb skin so scratching is not helpful (was that you who asked about that?). My back is also never comfortable. It feels like I had an aluminum ladder implanted. We are about the same distance out from surgery. I do feel better all the time but am so surprised at how slow it is going. I think I thought I was some sort of super healer who would just bounce right back. We're probably all super healers, but this surgery is so major it could even kick superwoman's butt clear into next Tuesday. And oh yes, that reminds me, my butt bones hurt as well.
Sue

LaurieAnne
06-01-2011, 11:23 AM
Hi Laurie Anne,

I just re-read my post in response to yours and it was sort of all about me. Sheesh! Sorry. In more direct response to your questions though... my right hip and thigh, even down past my knee, has been very tender and sore, they told me it is that bursitis and IT band syndrome and recommended PT. I've got tons of sharp pains and achy pains in my back at various spots, and I also have the itching on totally numb skin so scratching is not helpful (was that you who asked about that?). My back is also never comfortable. It feels like I had an aluminum ladder implanted. We are about the same distance out from surgery. I do feel better all the time but am so surprised at how slow it is going. I think I thought I was some sort of super healer who would just bounce right back. We're probably all super healers, but this surgery is so major it could even kick superwoman's butt clear into next Tuesday. And oh yes, that reminds me, my butt bones hurt as well.
Sue

Hi Sue,

No worries at all ~ Your post was excellent and outlined the same issues I am having so it definitely helps me feel like things are on the right track. Yes I a realizing just how MAJOR this surgery really is! I don't think I quite comprehended that when before but it is so helpful to know that so many others are dealing with the same issues and that in time they DO resolve! We just have to be diligent and follow dr orders. I am heading off to PT this afternoon and I am going to ask about the bursitis and IT band syndrome. If nothing else I can learn what it is and how I might be able to relieve some of the discomfort. I am so looking forward to the year mark when I am able to do more. Until then it's one day at a time :) Thanks to everyone for sharing your experiences and giving advice. This forum is a lifesaver! Take care

jeneemohler
06-01-2011, 01:21 PM
Hey ladies!

My right thigh and deep in my buttock/hip has also been hurting. But I have had this pain for 15 years now, since the mid 90's. I was on Vioxx, then Mobic after that was taken off the market. And years of injections. I was hoping surgery would help it. Now, I'm hoping that it was just so inflamed from years of irritation, and that it will take some time to settle down...

The interesting thing is that when I mentioned it to my physical therapist last week because some of the exercises aggravate it, he applied a Jones counterstrain technique. I was skeptical of something so simple for something I have had for years. He worked on me last Friday and I was almost completely free of the pain all weekend long. The best I have felt in a very long time. I am going back Thursday for some more. We are shooting for once a week in addition to my regular therapy.

It may sound crazy, but it may be worth a try for those of you who have had no relief with any other methods. I am no expert, but it involves muscles and tendons that attach to bone and can be sending false messages along nerves to major muscles and cause constant pain. I don't know much about it yet, and I'm still researching, but I DO know how I felt afterwards! Here is a quote from wellness.com to briefly explain it.

" Jones counterstrain, also known as strain-counterstrain, is a gentle technique developed to treat neuromuscular and musculo-skeletal problems by Dr. Lawrence Jones. The technique was accidentally discovered by Dr. Jones after trying to move a patient around to make the patient comfortable.
Strain-counterstrain is currently used to correct abnormal nerve and muscle reflexes with the intention of correcting painful postural and structural problems. The technique involves finding tender points, often on or over joints, along the body. A manual therapist uses his hands to position parts of the body in ways that release tight, painful muscles.
Strain-counterstrain is used for a number of medical conditions with muscle involvement including bursitis (inflammation of the bursa, which is a small sac that cushions the joints), tenditonitis (inflammation of a tendon), tension headaches, sciatic nerve irritation, as well as loss of joint mobility."

I found another great site that describes it better. Copy and paste this link to a physical therapy home page for a much more detailed, yet easy to understand description.

http://www.wholept.com/articles/strain_counterstrain_technique.html

Obviously, this may be too simple for those of you with more complex problems. That being said, I was sure for all this time that most of the pain in my hip, butt and thigh were solely nerve pain. I had 3 laminectomies, and 4 nerve roots that were compressed and released with surgery, which seemed to prove it. But now I am having to rethink that. Maybe some of the pain involved aggravated muscles ON TOP of the nerve pain... Or even heightened the nerve pain. It makes sense with the structural changes we have in order to compensate for our imbalances, and for the dramatic changes our structure goes through after surgery.

Just some food for thought to share with you guys!

LindaRacine
06-01-2011, 07:56 PM
Laurie Anne, thanks for starting this. It answered lots of my questions as well. I am so impressed that you are able to work at this point. I'm having lots of the same issues I'm reading here and was a little concerned about them, so it is good to realize these are 'normal'. I'm still having lots of nerve pain in my right leg, hopefully when the removed the screw impinging on the nerve root it didn't leave any lasting damage, but I am wondering how long it will be before I begin to see some improvement there.

Linda, I'm also having the bursitis issue, as well as something called IT band syndrome all from my right hip, so my body is feeling numb and/or painful from my right iliac crest to my ankle. I have unrelenting leg swelling ever since surgery in January. Does anyone else have trouble sitting? I can't sit for too long before it really fires up that nerve pain. I went in for a shot in the hip joint but the physiatrist said my pain levels were too high for him to attempt it at that point so I'll do it later this week. As an aside, he put me on Cymbalta for the pain but it didn't touch it and I kept falling asleep on it so I quit it after I nearly nodded off behind the wheel one day.

To top it all off I am sure I have an incisional hernia at the site of the anterior incision. I'm just tired of feeling so torn up! Because of my right leg issues I was only able to lie on my left side, but now with this hernia I can't lie of my left side either now. Sitting is uncomfortable, so I spend my days either standing or lying on my back, but either one of those is still uncomfortable too. I just can't wait until I feel comfortable again! But each day is a little better so I know that day is coming. Knowing that i'm not alone in going through this, knowing you all are or have come through so well is a real reassurance.

In the hospital my brother made me a sign with that famous affirmation "Every day in every way I am getting better." At first it made me laugh (remember Stuart Smalley on SNL?) but I have to say I've really responded to that and feel it is coming true.

Ed, I hope your knees are getting better. You've been such a great source of support. Positive thoughts of healing to all of you!

Sue
Hi Sue...

I'm sorry that you're having so many issues. It must feel really overwhelming.

Something to check out in terms of leg swelling is lymphedema.

Regards,
Linda

LaurieAnne
06-03-2011, 10:17 PM
Laurie Anne...

In the meantime, do ask your PT about the possibility of greater trochanteric bursitis.

Linda

Linda,

Thank you so much for this advice. I asked my PT about it and she said it definitely appears that I have the trochanteric bursitis and possibly IT band syndrome. She tried muscle stem and heat on my hips and thighs though it didn't provide much relief but maybe over time it will. I do wish I could take anti inflammatories as I keep hearing people say how much they help although I do worry about non fusion if I take them. I will definitely wait to ask at my appt on the 22nd. Anyway, it's just nice to be able to identify the pain I have been having and know that there are treatments available for this. I hope to find one that works and soon! Also last week I started an aquatics back aid class. After the first class I was sore even though this is soooo not any kind of workout. Just walking in water and stretching but I was pretty miserable the next day, however, after the second class last night, today wasn't as bad and I realized how much I love being in the pool...something I've stayed away from for years...why? Not sure but I'm so glad I tried it. I would definitely recommend it.

golfnut
06-04-2011, 08:00 AM
Laurie Anne,

I hope you start to feel improvements soon. Did your physical therapist (Janet?)
think an injection would help? Linda seemed to get some relief. I try to make it to the y pool a couple of times a week, but haven't done any actual swimming yet. I just sit up straight on the noodle and do the breast stroke and back stroke and use arm weights while walking. Janet said I could do front and side leg kicks while standing. What stretches are you doing? I would like to try something new. I enjoy the warm water even though I feel a little foolish sitting on the noodle like a little kid.
I am so sorry you are having this additional pain, but imagine it helps to know that it is common and that it will improve. I hope to meet you on the 22nd.

LindaRacine
06-04-2011, 03:59 PM
Laurie Anne...

You should definitely request an injection. It's unlikely to hurt, and very likely to help.

Dr Berven let me go back on NSAIDs at 10 weeks postoperative. He recognized that it was a big quality of life issue with me, and since he'd used BMP on me, felt it was reasonably safe for me to restart them. Something to be aware of with NSAIDs is that they rarely work immediately, they need to build up in your system, and the same drug doesn't work for everyone. When I first started using them 20 years ago, I didn't hit on one that worked for 3 or 4 months.

Hope you get some relief soon.

Regards,
Linda

LaurieAnne
06-06-2011, 09:29 PM
Laurie Anne,

I hope you start to feel improvements soon. Did your physical therapist (Janet?)
think an injection would help? Linda seemed to get some relief. I try to make it to the y pool a couple of times a week, but haven't done any actual swimming yet. I just sit up straight on the noodle and do the breast stroke and back stroke and use arm weights while walking. Janet said I could do front and side leg kicks while standing. What stretches are you doing? I would like to try something new. I enjoy the warm water even though I feel a little foolish sitting on the noodle like a little kid.
I am so sorry you are having this additional pain, but imagine it helps to know that it is common and that it will improve. I hope to meet you on the 22nd.

Hi Karen,
I will ask Janet (p/t) about the injections although I am VERY skiddish about getting any...it's not the needles I fear but side effects of meds. As far as stretches we and exercises is VERY basic. Like straightening your legs one at a time out in front of you to strectch your hamstrings. Leaning back on a floatie to and bringing your legs up and opening and closing them against the water resistance. We also do stretching for the upper back by putting your hands behind your head and then bringing them down and lifting your elbows up behind you. These are just a few of the movements we do. I have only gone for a week so I can't remember them all but I do believe it's going to make a difference for me. I so look forward to Tuesdays and Thursdays. After class we go to the hot tub which feels great. I have been attending the south county YMCA. I assume you go to one in waterloo? Anyway, thanks for the advice about the injection. Take care!

golfnut
06-07-2011, 06:31 AM
LaurieAnne,
By no means am I one to give advice about getting an injection, however, Linda, our moderator, stated that it helped her, I believe. I don't blame you for being hesitant. I just feel badly that you're having so much additional pain.
Thanks for the stretching ideas for the water. I won't see Janet until July 6, so I am trying to not get bored when I'm in the pool. I recently added the styrofoam arm weights to my exercises. Yes, I go to the new Y in Columbia which is about a 7 minute drive. I walked laps there yesterday instead of outside since it was so hot. I don't know what I'd do without an indoor facility so close to our home.
I hope you feel better soon.
Karen

SusanS
06-07-2011, 11:40 PM
Hi Laurie Anne,

I posted earlier but it went into the ether somewhere... but thanks for your kind words earlier, and Linda, thanks for yours as well and the lymphedema suggestion. And Jenee, I want to know who your PT is! The Jones technique sounds great.

Anyway, Laurie Anne I just wanted to let you know I went in for an injection in my hip but I didn't notice any difference, but that's just me. It made me wonder if my issue is the bursitis or the hip joint itself or just the back. I was told by an excellent OHSU physiatrist that if the pain is in the groin area it is likely the hip joint itself, if it is on the outside of the hip then most likely bursitis, and if it is more on the butt bone/behind the joint then it's the back. He suggested keeping track of it with pain numbers at those three locations in order to get a read on which it is. Lots of my pain is also at the iliac crest on the right, which is where they took out "copious amounts" [according to the surgical notes] of bone marrow, so that's probably the culprit there.

Anyway, I'm glad I tried the shot because it was not painful and it is helping me to narrow down the possibilities. I am still having lots of sciatic pain which I had hoped the surgery would correct. Between that and the hip and leg nerve pain I'm thinking maybe my nerves are just still a little too inflamed so I'm hopeful nsaids will help. oh yeah, my surgeon recommended trying nsaids as he also didn't feel that at the recommended dosages it would harm fusion. I was happy to ready Linda's post because it didn't feel like it was making much of a difference but I'm going to hang in there with them because before surgery they helped me so I just need to give it more of a chance to work.

It's always getting better. It's just sloooooooow. I'm steadier on my feet now and less afraid of the pain of being bumped so I've been going out and brushing the horses, which is great therapy. I am feeling a little less fragile.

I have to ask though, is anyone else aware of a constant sensation of a large metal mass in their back? I feel it moving around and it feels like I've got a lump like a pillow in there when I lean against the seat in the pickup or even in a normal chair. I can't lean against a hard surface at all. I woke up the other night dreaming that an owl had its talons digging into my back (a pair of great horned owls nest here and hoot alot so they worked into my dream). Anyway, upon awakening I realized it was just my hardware hurting again, but that is exactly what it feels like (sharp talons) Is that pretty normal at this stage of the game?

jeneemohler
06-09-2011, 11:38 AM
Hi there Sue,

My PT is Gary here in Sisters at Therapeutic Associates. He is a very nice, compassionate man, probably around 60 or so. He really listens to what I have to say, and I don't feel like it is just a job to him and I'm just another patient. I feel like he truly wants to help ME. And he has!
I'm still aware of the hardware, too. I think you had a pretty accurate description of feeling like you have an aluminum ladder in your back! But the feeling diminshes more and more every day. I feel it mostly when I'm driving in my car. Sometimes I feel like I'm laying on wrinkles in the sheets, or the edge of my body pillow in bed, so I get up to straighten them out, and there is nothing there! I think it has to do with some areas having feeling, and some not. It sends some strange signals... The sensations have changed dramatically the last several weeks. I have finally been getting some feeling in my upper back. (My mid to lower back is still numb from my spine out to midway to my sides.) And with that feeling, I'm more aware of aches and soreness. It is just more sensitive. But at least I'm getting some feelings back!
Do you think you are up to getting out of the house someday soon? I would like to drive to Redmond and take you to lunch and do some horse therapy with you!

SusanS
06-10-2011, 03:14 AM
Perfect! TA is who I've been referred to. Yes, I'm getting out and doing short drives now. Would love to get together! The horses are great therapy, they seem to know to be very careful. Come over!

Thanks for the reply. It's funny how foreign all this still feels. It's as though I've entered a stranger's body. For some reason the past several days the hardware had seemed so bulky and klunky, today was better though. Some days are better than others. Anyway, its reassuring to know at this stage of the game this is normal. Will be glad when it begins to feel like part of me!