5 mos Post Op - still having problems....Normal?

[LindaRacine]

Sorry, I was commenting on "fused to pelvis vs/those fused to sacrum/pelvis."

[jrnyc]

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/...yc/pillow2.jpg

[JenniferG]

So glad for you Jess. Long may it last.

[LindaRacine]

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]

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]

Jess, I am SO glad your injections are working/lasting this time. What a relief!

[LindaRacine]

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]

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]

Thanks for starting this thread!

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]

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]

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]

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/stra...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]

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]

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]

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.