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jacquelineforde 07-02-2008 12:42 PM

second steroid injection..big problems..please help
Hi all
It's been a while since I posted. To review: I'm 38 and have DDD L5/SI joint and had two steroid injections so far this year.
The last was about 6 weeks ago and I am in increasing worse pain daily as of last week. I know you guys won't need the details as you will all understand how low I am getting over this. I really do still feel so ill informed and don't know what I am asking for anymore. My doc at the last injection was very short with me and when I said where do we go if this injection doesn't help, he said "you have to understand you will always have pain". He followed on "just have a look at the Social Security website and you'll see how many people are on disability benefits". I thought this was a very stupid thing to say and have little faith in him since it. However I am due my review at the end of this month (UK system).
When I go there I want to be better armed with ideas to take to the table, as I don't see him as being very helpful anymore, and I just want to find a way forward as it is really starting to affect my working life, as well as emotions. I've been paying for private Physio while I wait for my review and the guy has been using a TENS machine, mostly on upper back due to a lot of tension there. Last week he put one electrode over my lumbar injected area and throbbed quite a bit. A week later that area is super painful. Could it be related?
What I could really do with is some advice from anyone here as to what route I should next think of. Another injection? How many should I push for before we know they don't work for me? More physio?
There are two basic things I have never properly tried and these are pain killing medication (don't want to just mask pain forever), and core muscle exercises. I would like to try the exercises but with such strong pain at present, is this wise? I am assuming I am super inflammed right now so would that aggravate? I am still trying to get my full MRI details so I can post if it helps. Also, my pain has always be one sided, is that normal for DDD?
Sorry for so many questions, but as I said I still feel so blind and frustrated, and advice here before has been so helpful I can't emphasise enough....

kezzo 07-02-2008 01:29 PM

Re: second steroid injection..big problems..please help
hi,i was diagnoised with the same as you 2 years ago,i was limited to what i could do in a day and was on pain killers,i had months of physio and 2 lots of injections,neither made any difference what so ever so in the end i decided on fusion,after reading many horror stories i was petrified of what the outcome would be but i had no other choice as i had tried everything else,that was 4 months ago and i cant believe how successful its been,i stopped taking medication after 1 week and i just watch how i do things like not to bend over or carry too much,i can walk for miles now which i could never do before,i know its early days for me still and over time it could get worse again but at least for the time being i have got most of my life back,i just thought i would share my story with you as i know what you are going through,
take care

mznell 07-02-2008 03:51 PM

Re: second steroid injection..big problems..please help
I don't know what all you've had done yet, but it sounds far too early for your doc to be giving up on you. What he said was no doubt correct, but irrelevant to you at this point!!

Generally, at least in this country (U.S.) steroid injections are given in a set of 3. If you aren't seeing improvement after 3, do not pursue it further as the steroids can damage soft tissue. Usually physical therapy is attempted to strengthen the core. You might want to work on strengthening the pelvic floor muscles as weak muscles there can cause lower back pain, and can kind of put the L4-5, L5-S1 vertebrae and nerve roots in a compromised position.

Surgery should always be considered as the last option, but it can help in many situations.

Don't let that doctor discourage you. You still have many options open to you.

biglakebubba 07-02-2008 09:34 PM

Re: second steroid injection..big problems..please help
I was in a job where whiplash injuries were most common in winter. Eventually I developed lots of chronic pain and DDD from the repetitive injuries. I have had at least 5 pain docs and probably been seen by a dozen or more others including 9 independent medical evaluators (insurance co. hired guns).
If you are seeing any doctor for anything and not satisfied, fire their no good lousy hides and keep looking until you find a good one. I finally did. It took me 9 years, but when I did, the alternative ideas came out by the droves. My new doctor offered spinal stimulators, lydoderm patches, ibuprofen patches and two drugs I had never heard of in all those years, (lyrica and cymbalta). The lyrica and lydoderm patch has been a god send to me. I believe the lyrica is non-narcotic. I have lost 25 lbs. since being treated by the new doc. and that can be related to increased activity.
Whatever you do, dont give up on medicine, just the present piece of work who is obviously "just practicing medicine" if you know what I mean. Good luck dear, and hang in there. P.S., if you dont have, get some Biofreeze, a topical pain reliever. It has kept me sane. Good luck, Bill

kera4 07-03-2008 11:20 AM

Re: second steroid injection..big problems..please help
Hi! I am sorry you are in so much pain after the injection. I have a degenerated disc like you at L5-S1. A few years back I had a series of 3 injections (epidural), but they did not relieve the pain for long. After I had an MRI my doctor could see that I also had inflammation in the facet joints around this bad disc. When he injected the joints, it really helped my pain! This has led to a nerve burning procedure for me, which helps control the pain more long term. You might ask your doctor, "Do you see any inflammation in the joints near this disc?" Also, the joint below the L5-S1 (sacroiliac joint) can be a culprit as well. I have had the SI joint injected as well. I think the hard part is that when you feel low back pain, it can be from any of these areas, and the injections help rule out where the pain is not. I agree with the previous poster, if your doctor is not willing to seek out where the pain is coming from and formulate a plan that works for YOU, then you should seek another doctor. My doctor is very nice and has been persistent in figuring out my problem. I am lucky to have found him. I wish you the best-come and vent anytime. Take care, Kera4

jacquelineforde 07-03-2008 02:16 PM

Re: second steroid injection..big problems..please help
Dear all
Thank you so much for taking the time to give me your own stories and advice.
Re core strength exercises, is it ok to try this (maybe pilates?) when I am currently experiencing so much pain? I will try anything but don't want to make things worse if I'm particularly inflammed or whotever at present. What about the use of the TENs machine with my physio at this time too?
Kera, you/ve been helpful before, so thanks again for your input. I do still feel so underinformed though, I don't even know what type of injection I had both times, just that it was in SI joint area and he got me to tell him where to inject, i.e. where was most pain.
Thanks for painkillers advice too, I have started with over the counter Ibuprofen which doesn't seem to do much so good to have other names. With regards to changing docs I'm in a tricky situations as I am, according to the docs, no longer eligible under my UK health system as I spend more that 3 months a year working abroad. I am just about persuading them to treat me so it could be hard to make the demands to see someone else, which I would normally do.
My 6 week post injection review is not due until end of July, and as the pain is really bad after a day's work I am putting ice on area each night. Is this ok?
Thanks again, really really good to have this site.

jacquelineforde 07-06-2008 02:35 AM

Re: second steroid injection..big problems..please help
Hi guys
Just to repeat my exercise questions here below. In lots of pain (dull , sometimes sharp throbbing over right lumbar) and would like to tackle something before end of month's hospital review.TENs machine wth physiotherpist over the lumber injected area ok for me to do with current inflammation? Also, when my review comes up should I insist on third round of injections? Have a feeling he will say after two didn't work he doesn't want to try anymore, but this could be more to do with fact he doesn't want me on his system as I'm a more unusual patient (due to living abroad versus NHS etc).
Also I now realise I never followed up the injections with any exercise programme and I now see that a little after injections may optimum time for the core strength exercises, right? As you can probably tell I want to avoid the fusion step as much as possible. I'm very slim so don't need the losing weight option, and see the exercises as my other step for now. If you know of others, please do tell me.
My history again:Xray showed minor spurs, my MRI showed DDD L5, my doc said could have been brought on by hairline fractured ten years ago to coccyx, 2 steroid injections this year.
Many many thanks.

kera4 07-06-2008 03:40 PM

Re: second steroid injection..big problems..please help
Hi! Usually after injections, I will start core strengthening exercises about a week after injections. I do use a TENS machine and ice a lot too. With the TENS machine, I find it is best to place the pads over the large muscles, and not in close where they injected. Further away from the spine. That way is helps lessen the muscle pain, but does not aggravate the area that was just injected. I don't do my exercises too hard until about 3 weeks after the injections.

I just had the lumbar nerve burning a little over a week ago, and I think I overdid it! I went on vacation over 4th of July (only a 2 hour car ride to our family's winery), but I am really sore now:( I guess I will have to try and take it easy for a few days. take care, Kera4

jacquelineforde 07-07-2008 03:05 PM

Re: second steroid injection..big problems..please help
Thank so much for the tens info. I have my private physo tomorrow and will ask him to keep it further away. I am still wondering why my second round of injections seems to have advanced my pain. I am now 6 weeks post injection and this pain basically came full on last week ( incidentially a few days after the tens was over the injected area. Is it possible for injections to actually advance problems? In the space of 10 months I have gone from "tolerable" pain brought on by extended walking to the last week of daily acute pain, sharp and making it hard to sit down for long periods.That's after two sets of injections 3 months apart this year. I am still not sure what I should push next.
Hope you're doing better soon too.

jacquelineforde 08-26-2008 01:32 PM

Re: second steroid injection..big problems..please help
Hi all
It's been a while since I posted. To review: I'm 38 and have DDD L5/SI joint and had two steroid injections so far this year.
Had second review and doc says injections are obviously not working. He has sent for updated MRI at my request as my pain is so much worse than just 8 months ago when I had the first MRI, and daily life as well as mood is really affected. I am so frustrated and beginning to doubt any light at the end of this tunnel. I have now attained my first MRI report below and would appreciate any viewpoint as my doc assigned me physio (didnít work) and basic painkiller meds (ditto) and I am due a long wait until the next MRI review. At this point I am willing to try the private route again (losing faith in this doc) and so would really appreciate your very imformed views on my first MRI and current docís treatment path.
1.Dehydrated disc at L4/5 and L5/S1 level noted
2. incidental note of 7.5mm Tarlov cyst at level of S2
3. L5/C1 level diffuse disc bulge extending into the right extra foramina area and impinging on exiting nerve root at this level. Minimal associated facet joint degenerative changes.
4. Normal signal internsity of the bone marrow and spinal cord

The cyst and bulge have never been mentioned to me to date, and I now wonder if they may be significant as the doc mentioned possibly going down the route of nerve joint injection or block as the next step pending new MRI. My pain is sharp at times and I am not sure if I have sciatic pain as it radiates from lower right side and then throbs either there or under the right knee. The left side has never been an issue. The Tarlov cyst concerns me and I wonder if this may be the true cause and if so should I go private with a neuro specialist or stick with spine specialist?

Did I mention how helpful I find support and info form this site?, I canít stress that enough!

mznell 08-26-2008 03:52 PM

Re: second steroid injection..big problems..please help
Hello Jacquelineforde,

Nothing really pops out on your MRI report that screams "major problem." The Tarlov cyst is mentioned casually as it must not be seen to be causing problems. If it were pressing on a nerve root, it would most likely be noted. The cysts are fairly common and usually don't cause symptoms in most people.

#3 is probably the source of your pain, although the report doesn't give much information about the "bulge." The L5-S1 nerve root refers pain across the back of he buttocks, down the outer side of the leg, down the outside of the foot and sometimes on the bottom of the foot tothe 2 or 3 smaller toes. (for most people -- obviously these dermatomes are generalities). You can look for dermatome or dermatome chart and will see how the lumbar and sacral nerve roots refer out to the lower limbs...causing pain, sensations, etc.

Between the bulging disc taking up more than its fair share of space, and the degenerative changes in the foraminal opening at S-1 (usually means the foramin, which is a hole through which the nerve exits, is becoming smaller in size) the nerve doesn't have the normal amount of space to pass through. Thus, it is getting squished and compressed which results in "sciatic" pain down your leg.

You'll note the MRI result mentions the problem on the right side...and that is where you have the pain, behind the right knee, etc.

Does that help any? I don't know how to advise regarding your treatments as I don't know how your medical system works. I guess I would be reluctant to have further epidural injections just in case the Tarlov cyst is becoming symptomatic. You don't want to risk developing arachnoiditis.

xx M:wave:M

jacquelineforde 09-22-2008 01:33 PM

Re: second steroid injection..big problems..please help
Thank you for your insight. I am still wondering what I should be pushing for now. I am due review meeting of second MRI results, but I already know that it just says "no significant change in degeneration". It seems a little short for a second MRI ( 8 months apart ). Is this normal? Does this mean that the Tarlov cyst hasn't grown too or is the MRI only focussing on Degeneration? With the first more detailed MRI results below, do you think nerve root injection is a logical way to go next and I should push for this or are there other roads that I should be aware of? So many questions I know, sorry!

On a different subject, I have just been referred to a Pain Managment clinic and am a bit naive as to what that means in practice. To date my only "pain management" has been 5 phsyio sessions (at end of which physio said it wasn't working) and very recently prescribed Dicloflex 50mg plus DHC continus 60mg. What will happen at this PM clinic?
Thanks as always for any help.

mznell 09-22-2008 06:03 PM

Re: second steroid injection..big problems..please help

Again, I'm not positive how things are done where you are located...but usually when a second MRI is done, the radiologist also has a copy of the first one and checks carefully for changes. I would regard it as a good sign that you do not have more "problems" than mentioned in the first MRI. The radiologist should mention ANY changes, including the cysts, so I would assume they have not grown or changed either.

A pain management doctor performs the injections, nerve block procedures, etc. When a neurosurgeon or spinal specialist is not going to operate, he will turn the patient over to a pain management doctor to handle the case. Often, the two specialists work together to insure that the patient is in as little pain as possible.

I've kind of forgotten the details of your back issues. Did you ever have lumbar surgery? I would think they would do something to make more room for that S1 nerve root to pass through. They can open up the foramen to make more room for the nerve root. It is either getting inflamed or pinched from being compressed. Also the bulge could probably be dealt with to help with the pain.

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