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Introducing myself, and needing advice

tracyRNttracyRN Posts: 2
edited 06/11/2012 - 8:44 AM in New Member Introductions
Hi all,

I'm so glad to have found this forum, just poking around over the last few hours it sounds like there are a lot of people out there with issues similar to mine, only most are much more experienced! So here's my story, I'll try to keep it brief -

I started having lower right-sided back pain in 2005 when I was pregnant with my daughter; the OB/GYN just said "sciatica, it'll go away" and that was that. Even after my pregnancy, I continued to have problems with that area on and off for several more years. I mentioned it to my family practice doc and she prescribed Flexeril, which never really worked but the flare-ups were pretty few and far-between, maybe one a month. Then this past Christmas I must have really injured it leaning over a table wrapping gifts, because from that moment on the pain was constant and stabbing all the time; I was on ibuprofen every six hours on a daily basis. My doc advised some PT and if that wasn't helping, go to the PM doc for some injections. I went to PT twice a week for two months, but it only made the pain worse, and now the pain was spreading to other areas of my back and buttocks.

So I finally got into the PM doc, who immediately suggested some steroid injections into the SI joint (never really said what he thought it was, but the x-ray he ordered was negative). I did 2 sets of injections two weeks apart, with only 4-5 days of partial relief each time. The only time I had no pain was the few hours after the injection before the anesthetic wore off. After the results of the 2nd injection, he advised an SI rhizotomy of four areas on the right side. I had it 2.5 weeks ago, and some of the pain is gone, so I'm not giving up on it yet, but the area of the top injection site is extremely sore and tender to touch; when I followed up with the PM yesterday, he just said to do Lidoderm patches, which only help some. He sent me on my way and said that since I've had even some relief from the rhizo, I didn't need him anymore.

None of the docs have ever recommended an MRI or CT scan; I asked the PM doc if I should get one and he didn't think it was necessary. During the fluroscopic xrays during the injections, he did say he saw a lot of dark areas around the joint, meaning arthritis. Over the 3 procedures I've had, he only gave me ten Valium and twenty Vicodin 5/500; whenever I told him I was still in pain he said to do the Lidoderm patches. I really feel like he severely underestimated my pain and was not really on a quest to find out what was causing the pain in the first place. So now I've had two injections and a rhizo and still no significant relief. I don't know if I should try and go to another PM, or an ortho, or physiatrist or what. I feel like because I'm relatively young (30) and did not have a specific injury, I will just get blown off again. I also do not want to be pressured into more procedures that may or may not work. I really just want an answer to what is causing my pain and what I can do about it so I can have a better quality of life on a more permanent basis.

Sorry this is so long...if anyone has any advice, I would really appreciate it. Thanks!
- Tracy


  • Welcome to SH Tracy! I'm sorry you had to find this site, but I hope you can find useful information.

    If I were in your shoes, I would find or get a referal to a Fellowship Trained Neurosurgeon or Orthopedic Surgeon, one that specializes in the spine. I don't think asking about an MRI is out of line. And no matter what other opinions are, I think Dr's commonly underestimate pain levels. Doing procedures with no clear idea of what is causing your pain, makes little sense to me. It seems a rhizotomy may not be the answer if it only took away a bit of your pain. Or maybe the correct nerves were not chosen. Getting a correct diagnosis can only help. Sometimes that is easier said than done, but you have to start some where.

    Good Luck,
  • Welcome Tracy,

    I'm glad you found this site..it's very good sorce of knowledge of info and support site.
    It's very frusterating to get answers about our spines..
    Keep trying, keep searching for a doc that will listen,,its very hard to do but can be done..
    Took me long time and many docs i fired...and went thru 4-5 pm neuro's ortho's..
    If your request a doc to run a test and they are against searching for problem i would..get another doc for sure..
    hope you will keep us posted..
    take care
    neck,bone spurs pain started 04, back issues and fusion l4,l5 06~hardware removed.
    good few yrs. 09 pain sharp, numbness feet,legs, diagnosed fibro, neurop. legs.lung issues.
    daily goal do good thing for someone.
  • I agree with Traci, without a MRI to figure out whats going on with your back it seems like any procedure done is a shot in the dark. I would find someone you feel comfortable with that can figure this out for you.

    One note on the rhizotomy is that it can take three to four weeks for your nerves to die and therefore give you relief. I just had one done back in Feb. and it was around the end of week three for me that I got relief and I ended up having a huge increase of muscles spasms from the procedure up to about the four week point. I had my rhizo done in my facet joints, and it appears like you had yours done in your si joint?

    A common back pain with pregnancy is in your si joint, due to the hormones released to relax your ligaments and tendons. Once this joint is relaxed it can become too mobile and start to be painful. This is often something that just goes away post pregnancy. I just had a steroid injection into my si joint a couple weeks ago and it has given me lots of relief of my pain.

    Until you have a surgeon figure out exactly where your pain is coming from, they wont know what needs to be done to get you some relief. I wish you the best and I hope to hear you you get relief soon.

    take care......mitch

  • Welcome to SH. I have severe arthritis in my facet joints and I have rhizotomy's done about 1 x a year. That is about how long it takes for the nerves to grow back and start sending pain signals again.

    Were you awake during the procedure? Was the doc able to recreate your normal pain during the procedure?

    I have been getting this done for years now and it seems the more times I have it done the more relief that I get. Also it takes about 4-6 weeks for the nerves to die off completely after this procedure so you may have not received maximum benefit yet.

    Good luck and keep us posted.
  • if I were you I would insist on an MRI before letting them put you through anything else,otherwise they are just taking an guess.
  • As the others stated, Welcome to Spine Health!! This site is kind of 2 sites in that half is us the members chatting and exchanging information, and the other many Doctor written articles on all manner of spinal and related issues. There is a search box at the top of the web page - hope that helps!

    Now, as to your question. I too would seek out a spine trained specialist. Normally Neurologist and Orthopedic doctors go into this specialty. I would go in with my symptoms written down - when it hurts, where is it the worst, how long can I sit, stand, what makes it hurt more (me: loading the darn dishwasher!), kicking the dog - okay, kidding no dog kicking! I also went so far as to take a Dermatome map (since it is front and back of the human shape) and I marked in red the 'constant' pain areas, little black dots for numb or tingling areas, and gray shading for the occasional pains. Pick-tionary is a wonderful tool! Two of my Neuros added my artwork to my file along with my notes!

    After I gave that to my NS for my cervical follow up, he immediately sent me for an MRI! Our bodies know a lot more than we do when something isn't working right! If you are stuck with the doctors you have presently?...Try to be more assertive that you *need* to know what is going on. Some doctors are getting nervous as the insurance approvals are getting weird. Good luck, and please let us know how it goes, okay? Support *HUG*

    Again, Welcome aboard!!!

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Hi, Tracy! I'm an RN as well, and my specialty area is surgery. My center does a high volume of pain cases. Pain injections are done using a C-arm, or live X-ray. They are able to detect arthritic conditions as well as disc herniations, and placement of the injection needles and/or rhizotomy probes is as exacting as it can get with fluoroscopic guidance. We've had some people who didn't benefit from the procedure, of course; but the vast majority of people that were treated while I was there received at least partial and some total relief of their symptoms. It's not a cure, it's a treatment; it wears off, but for some the relief lasts for months.

    Without being a medical expert by any means, I agree that what you have sounds like an SI joint problem, given your pregnancy and the location of your pain. Often if someone with SI joint pain slides a hand along the side of the sacrum they can identify one extremely painful (I jump out of my shoes if I touch either side!) spot that feels like a lump. That would be the SI joint.

    Where I disagree is that every single case of pain should be referred to a neurosurgeon, or that an MRI is always called for. I think a physiatrist attached to a reputable pain management center is a better first stop for many people; you need a hands-on physical examination by an MD whose speciality is in determining the source of pain and helping you treat it. That may include physical manipulation, use of a compression belt, lifestyle modification (changing how you lift, bend, and use your back), and for truly debilitating pain, injections and neurological referral.

    If you have a history of trauma such as accidents or a fall, or if you have a hereditary or other condition that can affect your nerves (diabetes, for example), certainly you should see a neurologist firrst thing to rule out complications from such. They can arrange for appropriate testing and refer you to a surgeon if needed.

    Tracy, I'm not downplaying your pain, nor comparing it to others'. Everyone feels pain in their own unique way, and if it hurts, it hurts. Don't let anyone ever make you feel like a whiner, because you know the truth, and that's all that matters. But please don't think a surgeon is necessarily the first stop on what for most of us is a long journey.

    I hope you find relief for your pain -- and hope that it doesn't involve surgery somewhere down the line.

    Be strong and take good care!
  • I agree that a spine-trained specialist, such as an ortho or neuro surgeon is good. Another option would be a physiatrist who can be a great resource for diagnosing the problem. They are also known as "physical medicine and rehabilitation specialists" and work a lot with spine issues. Also, they are generally easier to get into, and often cheaper to see. I have worked with a couple of different ones (the first one left the area) and they are wonderful at back injuries. A lot of surgeons send their patients to a physiatrist for postop care, and many have a physiatrist in their clinics to see patients before they are referred to the surgeon. At least in the area I live.

    I'm a little surprised they haven't done an MRI yet. Seems to me like that is something that should have been done prior to doing a rhizotomy or ESIs. You wouldn't be out of line to request one before having any further work done.

    Don't ya just hate wrapping Christmas presents for hours? That definitely gets the back hurting quick.

    Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!
  • hi and welcome to the forum! :H we are here to offer you support and answer what questions we can. getting a correct diagnosis can often be the hardest part of our problem... i would not hestitate for a moment to request an MRI and you should find a doctor who is willing to run that test for you.. good luck and stop by anytime. Jenny :)
  • Thanks everyone for your comments and advice! I think I'm just disappointed that this PM doc assured me that I would only have post-rhizo pain for "up to a week" afterwards...just after my initial post here on the 28th, I had a good 10 days of absolutely no pain or soreness whatsoever, for the first time in years! Then for some reason yesterday it came back, in the exact same area it was before, so I'm hoping it's just still healing.

    You all are right, in hindsight I should have insisted on an MRI; if the pain does come back permanently, I'm going to try a physiatrist and see what he has to say, and this time I'll be sure to get an MRI first! But for now, I'm keeping my fingers crossed for at least a few pain-free months ahead.

  • Hi Tracy, from what I understand the SI joint expands during pregnancy and sometimes the SI ligaments stay stretched after giving birth. Then the SI joint becomes hypermobile which causes pain.
    The only way I know of to tighten up the ligaments is Prolotherapy. Prolo has helped my SI joint problem a lot (not do to pregnancy).
    You may want to consult with a doctor who uses this procedure. Sports Med docs are familiar with Prolo.
    Good Luck
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