:wave: Hi..first time visitor. I' looking to see if there is anyone out there with a similar problem. About 5 months after back surgery, L5S1 fusion w/instrumentation, a Pa gave me an injection in my SI joint(extremly painful, almost fainted,almost vomited). Within a month i noticed muscle wasting at the site of injection. Next visit to dr's, another Pa gave me an injection, same location. i didn't feel a thing!! Visit after that I was told an injection done at hospital might prove to be more helpful as pain at that area of my back was worsening. After three injections total pain is worse and muscle wasting has grown to dent/hole approx. 2x2 inches along spine and getting worse. It often hurts to walk and i have constant Heavy presure and pain at SI area of back. I'm told by Dr nothing I can do, nerve feeding large muscle (supports spine) is damaged and not feeding muscle. He said muscle loss may go up a few more levels.You can actually see bone sticking thru skin. Anyone have a problem like this or an idea as to what type of Dr may help with nerve damage? I'm currently on several med's for pain and to help with sleep, but nothing to help with this new muscle problem!!

First thing is to find a different doctor! Something is very wrong with this picture. Then you need to find an attorney. A PA should NOT be giving these type of injections in the first place. I would bet it was shot into the wrong space and you are experiencing the muscle loss as a result. These injections should always, always be done with a fluoroscope to guide the needle placement. Is this a private physician, a pain management clinic or what? They should know better and it sounds to me that the $$$$ is what rules this place. If that nerve actually IS damaged, it is probably due to their negligence.

Please do find a good neurosurgeon or orthopedic spine specialist and see what can be done for you.

Carol

Hi Carol, This was done in an orthopedic spine specialist office, the doctor was highly recommended as one of the best in area. I was in the office for a 5 or 6 month follow up and explained to PA I was having some pain to the left side of incision, she said it was probably my SI joint and could give me an injection that might help. I saw the dr for my 1 year follow up and showed him the hole in my back. He said Nothing. At that time I had already had two injections in his office by two different PA's. They then made request for ins. approval for third shot to be done in hospital. It is 1 1/2 years after surgery am in alot of pain. Last time 4/05 I saw PA he said they could do surgery,FUSION of SI joint,I told him I thought the last surgery almost killed me & he then referred me back to Chirpractor I was seeing before surgery.Seeing him 3xwk. This chiropractor seems more concerned about muscle problem than surgeon. I'm scheduled for a new EMG/nc next month. I'm very afraid about future after being told by dr that this may go up my spine a few more levels. Have you heard of muscle loss involving such a large area supporting spine?

When you say you have muscle wasting at SI joint, I am wondering, is it in your hip or back?? I also have SI joint problems, but my pain is more in my hip near my tailbone.....

My experience was that I had a tumor at L5 S1, (benign)...it still is not clear whether the tumor created nerve damage that caused some muscle wasting in my right hip or did I have two things going on at the same time...such as tumor and SI joint problem which caused me to have right hip muscle weakness.....

I recall that approximately 9 months before the tumor was diagnosed, I had a trigger point injection at the exact site of pain, beside my tailbone....I recall there was an indentation that occurred. I assumed the trigger point injection did this, and was in fact told that it had the next time I requested another one.

Did you have a trigger point injection?

As of now, the indentation is gone. I still have a lot of pain at times in the SI as a result of sitting or too much walking or standing. I am seeing a chiro for this, who has been helping way more than any other dr to date. In addition, I began taking Daypro, which has also helped a lot.

As for a med that helps with this kind of pain, I can say that ambien, a sleep aid is the only thing that allows me any comfort and relief so that I can sleep. My physiatrist says he has no idea why it helps..duh! it relaxes the muscles obviously....

Something that has helped me gain some strength and muscle tone back was contracting my hip muscle as in isometric exercises....no one told me to do this, I started doing it on my own, and I can tell the right hip is already getting stronger....therefore, it will stabilize the SI joint.....I can see some good changes with the chiro treatment, and the Daypro....good luck, hope you get some answers.... I have had to deduce many of the answers for myself as my treatment has progressed...

:wave: Hi Betty, Thank you for the reply...sometimes I feel like no one REALLY understands what this is doing to my LIFE. I'm sorry your also in pain! I take ambien at night with lortab & amyt. It does help. I'm taking Neurotin & lortab during the day. The HOLE/dent in my back boarders my spine, it is also over the SI joint. I was at first told there was a screw sticking out of it, now I'm told it is bone. Dr is doing emg/nc in 3 wks, he said it will NOT get better, muscle is Dieing, as damaged nerve is not feeding it. This is bad now, I'm really frightened about future and how loss of muscle that supports my back(muscle wasting is on left side only, where PA injected me) It looks like someone stuck thier fist in play dough & left a hole with discoloration. How big was your DENT? Did anyone tell you what caused it? My chiro is very helpful!! He 's the one that asked for the EMG. He also scheduled me for another spine dr for anther opinion. I have been very lucky with my health til I hurt my back at work. I don't LOOK as though i'm injured (with clothes on) and even though friends & family say they understand, I know they don't. One of my sisters ask me how I was doing the other day, I told her that the Pressure & pain in my back & leg was BAD, she said " yea, we're all getting older" WHAT?!!! I couldn't even talk to her about it after that. This has nothing to do with age. (50) I don't know if it was a trigger point injection, (what exactly is that?) it was a very PAINFUL shot. I hope your having a good day and I would like to hear from you.Nice to know someone understands. :wave:

Hey there...sorry it has taken me a while to answer back...sitting is the culprit in my life....so computer time usually is at a minimum.....

As for the indentation in my hip near my tailbone, it came about right after I had a trigger point injection...which is an injection with some lidocaine (numbing med) and cortisone......it is supposed to go right to the painful area.....and help with inflammation, flare ups etc.....that is when the indentation about the size of a half dollar appeared....and it also discolored not quite as dark as a new bruise, but maybe one that was on its way to healing.......that stayed around for about 1 year.....I was told that those kind of injections can do that......for me, because it was in the hip, it may have been easier to get the muscle back to some kind of normal use.....

Have you had a definitive EMG to determine that muscle was completely dead? and nerve will not come back? I say this, because when I had the tumor removed, I was told that it could take up to two years to get a nerve to heal........

Have you ever been to a Doctor of Osteopath? I ask, because had I had it to do over again, I would have sought one out in the beginning....it seems that from what I have heard, a good dr of Osteopath is worth their weight in gold.....a good one that is...and I know it is hard to seek someone so knowledgable these days.....but you can tell from the get go if they are going to work out.....these guys know a little about everything from what I can gather.....Chiro's are great, but may not be able to address the muscle wasting issue as well as you will need that addressed.....

And when you talk about not understanding from family and friends....oh yeah! I am with you there......I think I have had that same conversation with my sister.....about the getting old thing...yeah, been there done that.....and isn't it awful? I have gotten to the point where I usually regret pouring out my emotions to my sister or others when I just need to vent....I usually think afterward...."I don't feel any better, maybe worse"....when you get "no comments" or blank stares, it can make you feel worse than you did before you did the venting.....

I know where you are with all of this......and I am sure you have found the right place to vent and just have some of your feelings validated.....feel free to vent to me anytime.....take care....betty

Hi Betty, I had a positive emg/nc in '02 on my leg. None since urgery 12/03. I am scheduled for one in a couple of weeks. Hopefully it'll let me know more of what's happening w/ nerve and muscle. The muscle wasting didn't start til after SI joint injection of 4/04.I guess that's what happens when you tell a PA that your experiencing a new pain.
I have not seen an osteopath. Don't even know what they do... my chiro is very good, he's the one who has set up the new emg and is also sending me for another surgeon for a 2nd opinion.
I'm curious as to whether you've had any other problems w/ muscle or nerve at the injection site. Much pain? I'm told by every dr so far muscle will not come back because it is not being 'fed' by nerves. Everyone I've shown the damage to tells me to get a lawyer!!! I may need to do that, but right now I want someone to help stop this muscle loss. I'll be looking into get some info on osteopaths. Try & get back to me soon. Hope your having a pain free day!
Sally

Hey Sally.....I guess I am having a hard time figuring out where the muscle loss you have is at ...is it in your hip?? or low back?

I ask because mine was in the right hip....and I had been told not to give up on the muscle getting fed by a damaged nerve till perhaps a few years...and I can vouch for that because of another experience I had....it took about 3 years for the nerve to funtion better in my left leg due some unrelated surgery.....

For me, I never had lasting pain after an injection.....could the dr have hit a nerve with the needle?? I have also heard of this....happening, although not to me....at least I hope not....I am at a point, I am feeling a little hopeless again....the nerve pain/impingement seems like it just will never go away.....I am about to call my PM dr to say....help, I need another answer.....I am not sure chiro is the answer for this, if I have an impingement....at the sacrum area....I had a lot of hopes things by now would be better....I have been seeing the chiro for almost 3 months....maybe I am not giving it enough time....but my life is kind of falling apart around me when I have bad days....and this has to get better :confused:

Hi Betty, I have a copy of PM dr report (He's doing the new emg in 2 wks), he put in report that I have about Complete Atrophy of Paraspinal Musculature following injection therapy. He noted he has no specific treatment for this, it is most likely permanent. He stated to me, that it was permanent, nothing can be done about it. (Nerve was damaged when Pa gave me an injection!) The dent is in my lower lumbar area, not my hip. I'm told it may go up a few more levels, thats what scares me most. I have nerve damage in my leg & foot already, that causes foot cramping, numbness, hip pain etc.This muscle wasting is just one more thing I'll have to live with.
I wish there was something I could say to cheer you up!! What are you doing to relieve pain. Does soaking in tub help? Ice? I've been using my ice pack alot lately, helps me sleep. It may sound crazy, but sometimes I'll have ice on my back & a heating pad on my hip and thigh. I find the heat soothing while the ice does its job. Get back to me! Sally

Hey Sally, I have tried twice to respond to this message, hopefully, this one will work....I can understand why you are concerned with the atrophy and the word permanent.....it is scary to think you have something that cannot be reversed....

As for me, I just have days where I really get down about my situation and there is nothing I can do but work it through......I guess I am still down about losing my job over 2 years ago to this.....and what is really depressing is the fact that the tumor that I had in my spine had been misdiagnosed for 2 1/2 yrs....had it been diagnosed correctly in 2001, I think I would still be working.....the pain only increased during those 2 years with no doctors listening to me.....when I finally did some of my own reading on the internet and seeing other peoples MRI's, I went back to the radiologist...so that is where a lot of the frustration comes into play.....I do a lot of what if thinking.....

Yes, I am starting to use an icing technique I read about on the internet last year...and my dr had also mentioned it to me.....it is where you freeze water in a dixie type cup and then ice your sore area with this directly on the skin.....it really does a good job....I am going to continue with this type of icing and see where it takes me.... thanks for writing...betty

Hi Betty, How awful it must have been for them not to take you serious when you were first complaining. Are you totally disabled as a result of having to wait so long for treatment?
I've never been told about using a dixie cup of ice before, are you letting the ice (water) actually have contact w/skin? I have plastic blue ice packs(dollar store) that I freeze & then slip into a thin cloth case, and rest that on my back. I'll place it half way into my waistband to help it stay in place, works really well.
Have the doctors given you a prognosis? None of mine have, except for an IME dr, he just noted that my prognosis is :Guarded.
It seems that even when I write down questions to ask, I still don't leave their offices with many answers.
Hope your having a good day :)

The icing technique does allow for the ice to touch the skin...this is the only technique that really relieves my pain...I guess one reason is that the skin actually becomes so numb from the cold, but I suppose maybe the other reason is that the area just gets so cold and stays that way for a while......I read about it someplace, and never tried it till the physiatrist I go to suggested it.......I also have ice packs that I keep in the freezer, but they don't give me the kind of relief I get with the direct skin icing......I don't let it stay on for too long.....

I have not been determined disabled as of yet.....and to look at me, you wouldn't see a problem, but sitting is impossible....and that is what I did all day on my last job....when I moved to a position where I walked more, that wasn't the answer either....things just got worse.....what does a person who cannot sit for more than a few minutes or stand and walk for more than a few minutes do for work? I'll tell you ...nothing! I have not been able to get my situation under control in order to work....a real let down for me...I guess that is why I am having such a hard time with this emotionally.....not feeling productive is a bad way to spend a life....but those are the cards I have been dealt....so I live with it...

Hey Betty, I just might try that dixie cup method, good to know what is helping others!! With most dr's it's just more & more med's or in my case one suggested more surgery. By the end of the day I might be in tears, yet I personally shudder at the idea of another surgery.
Interesting to now know that often after fusion, other areas of your back go bad because of adding stress on them. I never thought about that happening, yet it does makes sense. It wouldn't have made a difference anyways, I still would have had to have surgery.
I know exactly what you mean about working.....or not working. I really liked my job. Great job with wonderful co workers! Still miss a bunch of them.
People can't tell by looking at me that I am disabled, either. It really strange to be predjudiced against because you don't appear to be disabled. I've had to ask for help with things like loading & unloading a cart at the market. Ever get a look by a passerby as if your lazy or a prima donna? Weird! I just smile or say hi. :wave:
Ever try accupuncture? I'm so tired of being tired from med's that I'm thinking about it. I just really hate needles. It might help with the nerve pain, I wonder if it would do anything for the HEAVY pressure I feel at my SI joint.
By night time I sometimes can't walk without tears. Do you also have that Deep in your joint heavy pressure?
Nice talking to you :)

hEY THERE....I POSTED A NEW THREAD ON THE BOARD TO SEE IF ANYONE ELSE HAD EVER DONE THE ICING METHOD....I WANT TO MAKE SURE I AM NOT DOING ANYTHING DESTRUCTIVE.....IT FEELS GOOD WHEN I DO IT, BUT TODAY I AM FEELING A BIT BAD, MAYBE THERE IS NO CONNECTION....BUT I SECOND GUESS IT ALL THESE DAYS......

I KNOW WHAT YOU MEAN ABOUT THE THINGS WE NEED HELP WITH......I GUESS WHAT I CAN'T DO, I JUST AVOID....WHICH MEANS I DON'T SOME THINGS DONE THAT NEED IT....

MY SI JOINT IS SO STRESSED THAT WHEN I SIT, IT FEELS LIKE I AM LEAVING MY TAILBONE BACK IN THE CHAIR.....THE PRESSURE ON THE TAILBONE WHEN I GET UP IS JUST HORRIBLE.....I FIND MYSELF BEING AFRAID TO GET UP OUT OF CHAIRS.....BECAUSE IT IS SUCH A STRANGE PRESSURE....

LIKE YOU, I LIKED MY JOB AS WELL.....AND AM HAVING A HARD TIME COMING TO TERMS WITH IT ALL......I HAD COUNSELING LAST YEAR IT WAS SO DIFFICULT, BUT I AM NOT SURE IT DID ANY GOOD.....MY COUNSELOR'S ATTITUDE WAS TO JUST MOVE ON AND NOT WORRY ABOUT IT ANYMORE....BUT AT MY AGE, I HAD TO WORRY ABOUT IT...HAD I NOT BEEN MARRIED, I COULD HAVE BEEN HOMELESS....A SCARY THOUGHT....

Hi Betty, Have you tried to use the blue ice packs? I also wonder about ice directly on skin, but if it helps and theres no skin issues after, maybe its ok.
>My husband is great. He has a good job & is very helpful with things I can't or shouldn't do. Without him I'd of been in big trouble.
>It seems we have alot in common, except my problem started with a herniated disc. I developed an SI joint problem after L5S1 fusion. The muscle problem after injections. I hate being like this.
> My SI joint pain is to one side of tailbone, not in center of back like yours. It feels as though someone is sticking their foot deep into my back! Its a very heavy weighted pressure, it can hurt to walk, sit, stand or even lay down. I don't know what is going to happen with it.
>Do you think you'll need more surgery?

My Si joint pain is not in my back either...it is to one side of the tailbone..the right side....just feels like a lot of pressure when I get up off of a seat...like I am leaving half of my body in the seat.....

I am not sure what if any more surgery I can have.....when the dr removed the tumor, he acted like he had done his job and that was that.....I am getting another EMG next week, so perhaps I will be able to go from there....and i am also going to go back to the PM dr and say.....what else? the last few days....haven't been too great...and now I wonder if the icing method hasn't made things worse......it felt wonderful at the time, but I am concerned now that I inflamed something even more.....

I have two nice ice packs that can get cold from freezer or fridge...but honestly, haven't seen any lasting effects from those either.....it might be time for another SI joint injection......I was just hoping I would be able to avoid another one....but I think not.....I am like you, all forms of movement is difficult.....but sitting and laying seem to be the worse....

Hi Betty, I'm having another EMG this Friday to check on my radiculopathy, hopefully it'll also tell me more about the nerve damage in my SI area where this muscle is wasting.
After reading some of the other postings on this site, I'm wondering if there is any way to fix the SI joint w/out sugery. My surgeon wants do do a fusion at that joint. I'm being told that I wouldn't loose too much more movement if it was fused.
I would love to hear from anyone that has had SI joint surgery, fusion or other!!!?
I personally will Never have another SI injection, they didn't take the pain away, Maybe they helped for a couple hours. It was the first injection from a PA in surgeons office that caused damaged nerve, I hope they're Very careful with you!!! (and that it HELPS)
Are you being told what the problem is with that joint now that the tumor is gone? Is the joint loose? I've read on this site thats usually what the problem is, my Dr just said it's SI joint arthrosis and that they can fix it with surgery (fusion).
I didn't have SI joint arthrosis before my L5S1 fusion, so now I'm afraid that if I went ahead and had SI fusion that I would develope yet another problem!
Where would it Stop. Reminds me of that childhood song "knee bone's connected to the thigh bone, thigh bone connected to....etc"
I really am not looking forward to having the EMG, the last one was painful. I do want to know the results, though.
When do you go for yours? Are you having it done by the same Dr that did your last one? I am.
Does the hot weather seem to increase your pain? It' kinda crazy, both cold & hot weather seems to make it worse for me.

Hi there....I had my EMG today...and what a waste....he told me less than the last dr did, and this dr did it so that he could explain the test to me.....

I am convinced that there really is no way this is going to be dealt with in this area....for me, the only option at this point is listening to the chiro say to walk in the pool, which I do not own, or go to the beach and stand in the water......or the other option is to try to get PM to give another injection, perhaps once a month in the SI joint just to see if that will help......not much to go on is it?

I think if you actually has a dr that has said you have a way out of this situation via surgery, then you are at least better off than I am......I would gladly take surgery over having SI problems forever....I would chance it just to see if it would help......but not before I consulted at least another dr or two....is it your ortho dr telling you this? I can't find an ortho dr in my area that takes the time to even entertain the idea that my SI joint is bad.......

To sum todays dr visit up.....lousy....and I am no better off today than last year...and feeling very upset about that........I hope things go better for you on Friday......take care...betty :confused:

Hey Betty,
Sorry to hear things didn't go well. Did he recommend any type of treatment or just send you on your way?

The Dr that wants to do SI surgery specializes in spine surgery, same one who did my L5S1 fusion. I'm scheduled for a second opion end of this month.

If your chiro wants you to try pool therapy, maybe your PM could send you to a PT with a pool and maybe insurance would cover it. I tried it after I herniated my disc,went for a couple of months and it seemed to help a bit, but didn't have lasting relief. I don't know if it'll help with an SI joint problem. Hate being bounced from one place to another and still have same problems!?

As far as that emg you had, I'm a little confused. :confused: I have nerve damage w/muscle wasting over the SI joint from an injection, and radiculopathy in leg. That I would expect will show on the EMG, should I expect the test to also show SI JOINT problem? Is that even a nerve problem?

Have they done a MRI or CT on you recently? If not, I think you should press them to do one. I hear that having alot of shots, even CORRECTLY done ones, are not good for you longterm. Sooo..be careful, maybe get MRI first.

Take care...I'll let you know how things go with my test.

Hey Sally, I hope your test went well.....as for the EMG in general, I guess for most people it is an extremely valuable tool.....and maybe it has been more beneficial for me than I originally thought....the only valuable thing I got out of the test the other day was that the dr could not get a signal at a certain point ...which has now confirmed what I had believed for awhile.....I had to figure it out for myself based on how my own body feels.....not a very good way to be diagnosed, but sometimes self diagnosis is necessary.....what I have determined based on all I have been through is that the tumor did cause some nerve damage in the S1 nerve root....that in turn caused some muscle wasting in my hip ...maybe the medius gluteus, based on the location.....this muscle gets extremely tight.....and pulls on my sacrum and SI joint......and this is where all the pain is coming from.....

When I stretch this muscle out, as in good stretching.....this pain at my tailbone and SI joint disappears, and what I feel is a really sore hip muscle.....it feels extremely fatigued, and burns......I had this idea for awhile now, but whenever I brought it up to drs, got really confused looks.....so I put it on the back burner....but now, this latest EMG confirms my own diagnosis.....

When I had the EMG, and I asked the dr about nerve damage from the S1, he just started mumbling about damaged phone cable and phones not working....he was using that as an analogy to explain my body.....he must have been able to tell I was confused when I asked him, "Am I the phone or the cable or both?"....at any rate.....my chiro has been told my theory and I will continue on this path, I also believe I need to find a good massage therapist who specializes in stretching.....unfortunately, insurance won't pay for that...I am sure...when I went to PT last year and told them my theory of the stretching, they said by law they could not do that to me there......again, I put it on the back burner.....but now, it just can't be ignored any longer....now whether this muscle will start working properly ever is anyone's guess....but if I can keep it stretched out well enough to stop the pulling on the sensitive tailbone area....I may be at least in a better place......

I guess it pays to listen to our bodies and our instincts....I hate to self diagnose, but I am the only one who walks around in this body.....hope your test went well....betty

Hi Betty

I was told by the dr doing the test that there is perm. nerve damge in back & leg. Expect problems. He also said the hole in by back is caused by 'Denervation'. Which was from the injections to the SI joint. He said the damage is already done to the muscle and that WITH TIME the wasted muscle area gets bigger. "It's not like popping a balloon....(nerve)...and the muscle disappears, it takes time." He couldn't say for sure how much more wasting to expect.

I only had one side done Friday, need to go back again this week for him to do the other side. Yuk!!! It was painful.

He couldn't say if the main cause of pain in SI area was from the SI joint arthrosis or the nerve damage & muscle wasting. He said probably both.

How's the streching working out for you?
Have you asked anyone about putting the ice directly on skin? The ice packs that I use don't offer any long term help, but they do help me fall asleep.

I refuse to complain about the weather, but I gotta tell ya the hotter the day the worse shape I'm in. Have the same problem with extreme cold in the winter, You would think I'm out in it and I'm NOT.

It's time for a nap...do naps help you?
:wave:

Hey there......I can understand about the denervation wasting the muscle.....that is exactly what has happened to me....the tumor in the S1 was smothering a nerve till it was removed....the major muscle it affected was in the hip, this muscle is in the middle part.....maybe the gluteus medius....it goes down my leg to a point and then seems to get better from the mid thigh down......so perhaps the damage isn't all the way down.....one thing that I know has strenghthend this muscle is contracting as in isometric exercises.....that would be hard to do with the back I would assume.....you simply must find a way to try to work at least the muscle of the leg as much as possible just to see if you can get some of it back.....for instance, I thought the muscle was permanently gone.....but now I am not sure of that at all.....the stretching is helping a great deal.....and I am considering seeking out an excellent therapist with stretching to be the main part of my therapy.....I had that once before, but that was before the tumor was removed.....I don't think I will put the ice directly on my skin anymore.....

I have been taking warm showers and then letting the cool water run on my backside....closest thing to a cool pool....and cleaner......if ice helps you, go for it....do you ever use moist heat?? it seemed like the hip and tailbone pain used to help with moist heat as well in therapy......I have cut out my ice packs for now....and just using the cool water method from bath and shower.....and of course I go to the beach as well......I had heard that barometric pressure affects nerve damage....a really good therapist told me this last year......do you ever feel more pain when it is about to rain? when the barometric pressure drops, somehow it affects the nerves...if it is not working properly...also, someone once told me sugar can also affect a damaged nerve......

ps...No....naps are out for me....I can't sleep during the day any better than I can sleep at night......

YES... this humid weather is just killing me.

My husband was talking to a woman he works with yesterday, she was having a rough time walking, said that the humidity was hurting her knees. So I imagine anyone w/arthitis etc. talks about moving to the dry west....too hot for me.
I do stretch as much as I'm able, I just need not to over do that. Once while I was working with a pt, she had me over stetching and then I was unable to move for about a week and also put on additional pills for that week. It's important to me to do as much as I can though, because sometimes I feel as though I'M FALLING APART.

What have you heard about sugar & the SI joint? Does eating too much make a difference? Sometimes I crave it. I remember reading once that some type of solution (sugar) can be injected into SI joint & that it helps to tighten it! Ever hear that?

I do like moist heat...it's just been so hot lately that I've been sticking with just ice. :wave:

Hey there.....I had read a few years ago, and talked to some people who experienced problems with too much sugar in their diet as it related to their nerve damage and pain.....not sure what the reason is for it....but, this especially is true for people who have neurogenic bladders from what they said......but others who had nerve damage in other parts of the body also experienced it....what I wanted to know at the time is how would one be able to tell it was the sugar content that caused the problem...unless they did a dietary log to determine it.....

Is the injection into the SI joint you referred to called prolotherapy?? I have read a little about that.....apparently they use this therapy to tighten things that have loosened....but maybe someone else who is familiar with this can elaborate on that.....

Is there any type of exercise at all that they recommend for you to do in order to try to strengthen that back muscle?? I know there are some yoga and pilates moves that help with that.....I guess I would not want the muscle wasting to affect other areas....you know the one thing about our muscles ...sometimes we have the ones surrounding the damaged muscle to do all the work....for instance, in my case......the muscle in my hip was wasting away for quite a while, but I didn't pick up on it because the other muscles was working double duty....and then when it got to the point that it couldn't be ignored....that is when it caused so many problems.....one thing I know for sure in my case, is that stretching my muscles keeps things from hurting more.....I am having a problem with my insurance company paying for a stretching therapy.....this is usually done by massage therapists....something just doesn't seem right about this....but I guess they wouldn't want anyone to enjoy themselves by getting stretched....so they limit what one can have covered.....go figure

Hi Betty,
I do stretching exercises several times a day, just nothing too radical. I guess they help to some degree, it's just that I still have so much pain, it's hard to tell how much.

Betty, do your dr's say that you have SI joint arthrosis? Or is it called something else?

Dr's are telling me that the muscle damage in my back will be permanent because the nerve that stimulates that particular muscle is dead. I think you're right about other muscle working harder to make up for it & that creates a whole new set of problems for sure! Kinda like a slow moving snowball or TRAIN. I started off with a herniated disc causing radiculopathy & now I have several additional and often worse problems.

Do you find that you have to watch what you're eating more than before?!
I was one of those people who didn't worry 'bout calories, now I'm so much less active, it's a must!

I'm going to have to get more info on Prolotherapy.

Up until last week I thought my problem was with the SI joint exclusively.....however, this week, even though the EMG told nothing new, it told me that the nerve that controls one of the muscles in the hip isn't functioning well......that was the same thing it showed 18 months ago....

And based on some of other things I have been discovering this week, I now can see how the muscle being weak and not working properly has caused me to think that it could have been SI problems.....I originally began believing it was SI related when I had PT and they discussed SI problems.....do you see how off center you can become when one medical professional discusses one thing and another will discuss a different topic??

The PT had me convinced it was my SI.....went to the chiro in April, he didn't say it was the SI, but said Inflammation was the culprit........however, I live in this skin 24 7, and I know what I know just because I know it....does that make sense??

I can tell how my muscle feels after certain activities, and where the pain level is etc.....what I do believe is that when you have an affected muscle, it can make you feel as though you have several problems going on at once.....one affected muscle can throw your body out of alignment very fast.....and then it takes a while to get it back together.....if ever.....in my case, I am absolutely at a loss as to what the next move will be......I tried to get info on the damaged muscle from the dr last week that did the EMG...but he isn't helpful, at all......

I also watch what I eat for the most part.....the less active we are, the harder it is to maintain a good weight.....I have maintained, but just want to be a whole lot more active at the gym as I was before......time will tell

Hey Betty,

I've been searching for information on prolotherapy, :confused: there is so much to read. There are different types of injections and different opinions on how many you should have...

I also was reading up on SI fusion, most articles are negative. Lots of complications, some sound much worse than what I have now! At this point I feel really lost. I have to leave for the dr's soon, to have EMG done on the other side. Hope it's not as painful as last week ( my bad side)

I posted a Thread under Disabilities about having a "classification" hearing before the comp board. NO Replies. Are you on comp now? Ever hear of this type of hearing? I'm going to post the same question in Back Problems, hopefully I'll hear from someone who has had this type of hearing. :)

Oh well.....I really hate going back to this dr, hopefully it'll be quick and results good.

Sally

Yes, Sally, it is very confusing.....it took me 9 months of reading material and looking at other peoples MRI on the internet, before I concluded that my problem was not a cyst in my spine as they originally told me 2 years earlier.....for a non medical person it is quite confusing, but I went mainly on just common sense and instinct, and I guess by some miracle, I was able to get the doctor to admit he was wrong about what he saw originally.....

What I have heard about prolotherapy is that some people who get it initially are in pain and think that the therapy does not work.....however, according to the people who I have talked to about this, this type of thing is often expected as a part of the injections.....I guess you will see in your reading that it helps some and others not at all......the body is still a mystery....

I was not a part of comp when I lost my job.....I just outright lost it.....no income at all.....but I have heard of comp hearings.....I assume classification would be to determine your level of disability as it would relate to your specific job....if you have a number to call, just call and ask, "what can I expect at this hearing?".....just be careful what you say in any legal situation....I understand comp is a viscious thing....they hire investigators and all kinds of things....my sister once talked to a paralegal that says when she worked for attorneys who dealt with workers comp, she would follow people to grocery stores, and strike up conversations with them.....in order to find out things about them...that's pretty low....I couldn't do something like that for a living and sleep at night......I know there are people who lie all the time, but I just couldn't be that underhanded unless I thought I was putting someone who deserved it to be behind bars.....I used to work at the PD, and know how bad the world can be at times, but still, I couldn't do that as a way to make a living....good luck with the test and the hearing...betty

Hi Betty,
Test went well....ouch. The dr is very nice, talks non stop about his hobbies, cars etc. sometimes he'd even crack me up a bit which is tough to do when your being zapped or jabbed with a needle. Anyways, he did tell me that while I have symtoms on that side, I only have nerve damage on other side and in my back. Good News...who'da thought. :) I should get report with test results from both sides in a week or two.

How are you doing? Have the dr's confirmed that you don't also have disc problems?

I could never spy on people! I imagine most people try to wear their best face while in public. I do. An example would be...if I were in a supermarket, feeling like 'I was just hit by a TRUCK' and a stranger struck up a conversation with me...I would Not tell her I was in Pain! I would not tell a stranger that I take pills for pain or sleep! Or explain how much my life has changed because of those things. Anyone with a job like that must also be a MIND reader and a Judge.

Hope your having a good weekend.
Sally

Well, I'm glad the test went good......what was the plan of action for you? Did he say anything about Botox.....its been pretty good here this weekend....i'm just stretching and hoping that something good comes of it....I have some intense pain periods, but other than that it's the same ole same ole......hope you have a good plan for getting some therapy.....

This dr said that he doesn't think there is anything that can be done about the nerve damage or muscle loss. He said that my hip, which also hurts alot, is currently in good shape. Pain there is from nerve that goes thru hip. Try not to overdo thinks, lifting, walking, sitting..etc.

This dr also asked if I get or applied for ss,(never had a Dr ask about that before) I stated that I am waiting for an answer from them and he just said 'good'. He also signed application for a permanent handicap parking permit,and said he'd help w/ any perscriptions I need in future.

I'm seeing another surgeon at the end of this month(my chiro made this appt for me) for a 2nd opinion. I've decided to stay away from both needles & surgery if possible, am going to inquire about a support belt for the SI joint. Have you ever tried one? I read you wear it about 3-4 inches below your waist and it limits movement of joint, hopefully reducing pain!

No one has ever suggested Botox.

Sally

Hi Sally....I do have an SI belt, and could see where it did seem to keep things stable for me, especially when I was driving. I had to stop wearing it though when I realized that the PT I was having was not helping with the hip being aligned properly, so in effect, all I was doing by wearing the belt was keeping the dysfunctional hip in a bad place.....I was told by the PT that some people benefit from them and some do not....you may be able to tell if you will be able to benefit by taking something like a belt and putting it a an inch or so below the top of your hip bone, or just in the middle of your hips.....you will have to work with the placement....tighten the belt and see if it takes any pressure off of the ligaments near the SI joint.....

I have the exact problem with my hip also.....very tight muscle due to the nerve damage....however, the stretching I am doing seems to be doing a tremendous job for me.....I hope I am not speaking too soon, but it has been a better last few days because I have been stretching that muscle. It seems like my muscle is learning all over again how to stretch out and relax......perhaps, the nerve damage has somewhat been reversed, and the problem has been that I just didn't test the muscle with enough and proper stretching to get it relaxed.....I just hope I can continue on this path and have some results....after over 3 years, I could use a rainbow in the midst of so much rain......hope you see one as well.....keep up with what your dr's are saying ..he sounds like a good one......betty

Hi Betty,
Did you have to be fitted for the SI belt? How did you get it, should I ask my chiro about it, or another Dr? I would be so happy if something as simple as a belt gave me some relief. As much as I need these pills...they seem to control alot of what I do or Don't do. This morning I'm hurting more than usual and my stomach is upset. They also often knock the heck out of me during the day, make me very weak & tired.

It sounds as if the stretching is helping, which is great...hope you take it slow. Has it helped you reduce meds?

Sally

The SI belt I got came in Small Med. Large.....I got it from Physical Therapy, the therapist ordered it and my insurance paid for it.....I believe that chiros have access to that kind of thing, however, I am just wondering if insurance will pay for it coming from a chiro office.....for instance, my insurance will not cover massage therapist in a chiro office, but will in a PT office....I am going to get my chiro to write a letter of medical necessity, and they may cover it then....right now, the stretching therapy is what I need to follow up with as I can see that it is helping me with what little I can do on my own...and yes, it does allow me to cut down on the meds.....the stretching has taken a lot of tenderness and pain away from my tailbone area... I can tell I have some more work to do in the right hip, but it takes time...so as long as I see some result, to me it is some progress.....funny, it has only taken a week for me to see this improvement after I started stretching.....

I also have been sitting in cool bath water.....I figured, I don't have a pool, and we have had thunderstorms every afternoon, so getting to the beach isn't all that convenient.....even though I am surrounded by water....I don't want to be out there in a storm.....the cool bath water is really making that area feel better also.....if you can stand the cool bath, it might help you.....betty

Hi Betty,

Talked to chiro yesterday about a SI belt, he said it's not a good idea for right now. He thinks it might weaken the muscle even faster and wants to wait and see what surgeon has to say at the end of this month (going to see surgeon for 2nd opinion).

This chiro said he'll sent me to as many Dr's, for opinions, as needed to get answers & if possible Help.

Glad to hear that your doing better, cutting back on meds is great! I've tried in the past, with very bad results. So maybe.....I'll also find something that helps and be able to cut back too. I can remember a time when I didn't like to take aspirin.

Good luck with going to massage therapist, let me know if you get ok from insurance. Is massage therapy a bit more aggressive than chiro therapy?

Sally