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To the rheumy, and beyond!

KimD592KKimD592 Posts: 435
edited 06/11/2012 - 8:56 AM in Chronic Pain
I'm going to see a rheumatologist tomorrow, and I'm so freaking nervous for some reason! My previous neurosurgeon felt that I may have ankylosing spondylitis, which is an autoimmune disease affecting the spine, joints, and other organs. For the last several years, I've had many symptoms which seem to fit the diagnosis, from joint pain to low grade fevers to elevated sed rate to sciatica with a normal lumbar MRI, etc. I guess there is a blood test they can do, and if it comes back positive, it is more likely that you have the disease. I've seen this rheumy once before, about 7 or 8 years ago, and I was diagnosed with fibro. However, as the years went by I just learned to live with the pain and other random symptoms.

When I injured my back in October of last year and had the t-spine MRI, I saw a NS who recommended surgery. Prior to mentioning the surgery, he said that I had a lot of herniations in my t-spine, which is not common especially at my age. He went on to say that multiple t-spine herniations sometimes points to AS. Well, after doing some reading about AS, all of a sudden it all came together and made perfect sense. I don't want to get my hopes up that I may finally have an answer, but at the same time it would be great to finally have an answer and to know that there IS treatment. When I mentioned all of this to my current NS, the one who performed my surgery in July, he basically brushed it off because I don't have spinal fusion. Well, after reading more about it, it seems that spinal fusion is often a later symptom, as the disease progresses. In any case, my NS said that it's possible I have it, but there is no point in testing for it because it can't be treated anyway, which is a bunch of BS. If I weren't having issues with another disc and facing the possibility of another surgery, I'd probably not go back to him for just dismissing it like that.

So anyway, I've taken things into my own hands, since I've found it's important to be proactive in your own care, and I have my rheumy appt tomorrow. I should mention that I went to a different rheumy about 2.5 years ago, hoping to have some answers. This time a new rheumy did the tender point test and said she didn't feel I have fibro because I didn't test positive via the tender point test. She sent me off with a script for antidepressants, and I never went back.

So once again I'm going back to my old rheumy, who I really loved in the past, and I'm praying for answers. My appt is at 11:15 tomorrow morning, so I'll keep you all posted.

I do have a question, though. I was in the hospital about a month ago for suspected infection of my incision, but it turned out it wasn't infected. However, when I was in the hospital they drew blood for a sed rate and c-reactive protein. Well, the first day my sed rate was normal...it was 20 with a reference range of 0-25. The next day it went up and it was 40. As for my CRP, the first day it was 98.9, normal being less than 7.4. They did the high sensitivity CRP, if that makes a difference. The next day it had come down to 56.1, but it was still quite high. In any case, when I was talking with my NS about it, he said it was normal for these tests to be elevated after surgery. However, when I had the blood drawn I was about 5.5 weeks out from the surgery. From everything I've read, they should generally return to normal within 1 to 2 weeks. Why does any of this matter, you may ask? Because some people with AS have elevated ESR and CRP levels. So I'm trying to figure out if my levels were, in fact, still elevated due to the surgery, or if something else was possibly going on? I should also mention that I had been running a low-grade fever the day before these levels were drawn.


  • Good luck Kim >:D<

    I have been tested by my PCP twice with out any positive results. I was supposed to meet with a rhum last year but never did (I got wrapped up in PM and ESI's).

    I also have many bulges in my t-spine and my ns said I do not fit the pattern of AS. I did alot of dumb things as a young adult. I grew up on a farm and would often "buck" hay, pack 2/50# sacks of grain on each should, lifted incredible weights, and took many spills from attop my show horses. Not to mention some other bad stuff :)

    I fused very well and am very good at growing bone- are you?

    My SED rate was very high following my cervical fusion, but it was thought to be from my thyroid or the recent fusion. I adjusted the thyroid/or healed and my SED rate dropped into normal range.

    I am very interested to see you your appt goes. I thought AS usually showed up in the low back and hips first. My good friends daughter was just diagnosed last spring. She is 18 yro and about 6" tall. She has been having knee and back problems for some time then her hip went and the CP sent her for testing. She is doing better after removing any wheat from her diet.

    Another friend of mine has RA (rhumatoid arthitis) she runs marathons. She found out she had food allergies as well and was of the presnidone after removing the allergens from her diet.

    Try to stay positive and look at this as a possible managable illness if they say you have it.


  • dilaurodilauro ConnecticutPosts: 9,841
    Several years ago (well many - 2007), my Physiatrist was trying to isolate some of my problems, specifically my thoracic ones, so she sent me to see a Rheumatologist.

    At first there was some concern because several key blood factors were somewhat elevated. Problem was that I had been having a nasty rash, which we could not figure out the cause. I was on different ointments, predisone, etc to see what could help. I also had a low grade temperature. So, when I went to talk the the Rheumatologist, so threw away the blood work results and wanted new and up to date ones.

    I dont know enough about how the various problems we can have can change blood values. But I know that when I go in for new blood work every 45 days, sed rates, other liver function tests, sugar levels are carefully monitored.

    As one of my primary care physicians told me years ago, if you do not have any problems past or present, then you blood work should be fine, all within levels.

    When some values go out of norm, first thing they want to do is try to determine WHAT could have caused it? Was it something that maybe is not an actual condition.

    Kim, its good you are going after the various doctors. Its also very good to see someone who will take charge and continue to either research or see different doctors to get an answer.

    Some, may think you are just going from one doctor to another looking for the magic pill... From the short time, I have gotten to know you, I realize that your objective is very simple.... You just want to know what is wrong, what is the problem and from there a solution can be worked on.

    Good luck... I know you will keep us posted.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • Wishing you all the best at your appointment tomorrow. I agree with Ron that you are taking charge of your health and trying to find answers. I too am starting to do that. For a over a year, I left everything up to the doctors and everything took so long, meanwhile I deteriorated rapidly. I am now asking for certain tests and am getting them scheduled. I am looking for a reason for my continued pain.

    I had the blood test for AS last year,as I had some of the symptoms, it was negative. I have a family member who has been suffering with it for a long time.

    Hope that you are able to get some answers tomorrow, or at the very least rule some things out. Will be watching for your update.

    >:D< Karen
    >:D< >:-D< : Karen
    L3-S1 herniation and bulges, stenosis, mod facet,ddd,impinged nerves,coccydinia
    discectomy/lami July 2011-unsuccessful
    adr L5-S1 Feb 2012
  • Thanks guys! I will definitely keep you posted. You are absolutely right, Ron...I just want answers. I don't want pills thrown at me and other treatments that will just mask the problem. I want to get to the root of the problem and try to treat that, and then hopefully the rest of it will fall into place. If I need pain meds and steroids and NSAIDS to help me get through the flare-ups, then I will take them if I must. But I think my previous NS may have been onto something. So, we'll see what happens today. I think I'll go in there and tell her what the NS said and see what she says. I'll try not to bombard her with my lengthy history, so I'm just going to pick out a few key things to mentions. I do have a lot of hip/low back pain, along with sciatica. My lumbar MRI was completely normal, but a lot of time the hip pain and sciatica associated with AS originates from the SI joint. I've never had any imagine done of my SI joint. I am also having an EMG done next Tuesday, which my PM doc requested I have done. Being that my lumbar MRI was normal (wow, finally SOMETHING about me is normal! lol!) and I'm having this sciatica and numbness/tingling in my legs, he wanted to further investigate.

    Throughout all of this I've definitely learned that when you want answers, you really need to be the one to take charge. My PCP is great and will order tests and fax my records where ever I request. But if I settled for what my current NS said to me, then I may never know. And who knows, I could be completely wrong about this and the rheumy may say it's all in my head. But at least it's one more disease I can cross off my list. I was tested for everything from RA to lupus to sjogrens to grave's disease, etc. The NS was the first doctor to ever mention AS, so we'll see what happens.

    Anyway, thank you all for supporting me! Hopefully later this afternoon I'll have good news to report, one way or another.
  • So, I had my appt this morning and it went well. She really took her time and listened to me and asked a lot of questions. She isn't quite sure about the diagnosis of AS, but she said something is definitely going on with my ESR and CRP being so high. She agreed that it shouldn't still be from the surgery, being that my surgery was 5.5 weeks prior to when those levels were drawn. Plus, I had my ESR and CRP tested twice in two days. My sed rate was normal (20) the first day but the second day jumped up to 40. The CRP had come down from 98.9 to 56.1, but it was still quite high.

    In any case, she sent me for x-rays of my SI joints, which I had done today. She also sent me for a slew of bloodwork, including testing for the HLA-B27 gene to test for AS. I had the bloodwork done today as well. I go back to her on the 29th to go over the results of everything. Soooooo, now we wait some more. The week of the 25th is going to be a very busy week...the PM doc on the 26th, NS on the 27th, and Rheumy on the 29th. And not to mention the EMG next Tuesday.
  • Good Kim,

    At least you will have some answers and maybe get to the root of your problems.

  • So, the last 3 days the pain has been particularly bad. I had the epidural injection over a week ago now, and it's been two weeks since my dosage of Neurontin was increased to 1200 mg/day. My question is this..........what next??? Do I try another ESI? Do I ask for the Neurontin to be increased again? Do I ask for different meds altogether? Do I opt to say "eff it" and just have another surgery, my second in less than 6 months?

    I was talking to my hubby tonight, and I said that I could almost kick myself for having gone through with the first surgery. Yes, I was in constant pain, but it was certainly nowhere near the intensity of the pain now. In fact, some days I question whether it was really bad enough to have had surgery. The pain now definitely is at that level, because I can barely function. I can't take the kids out to play, I can't stand at the stove long enough to make dinner, I can't run to the store for things, I can't carry laundry baskets up and down the stairs, etc, etc, etc. Before, while it would cause me discomfort to do these things, I could at least DO them and still function to some degree. The only thing I really couldn't do was work as a bedside nurse, because I couldn't handle being on my feet for long shifts and I couldn't do the required lifting. I used to be able to put the girls in their stroller and go for a slow, but long walk around the neighborhood. Now, I can't even make it halfway down my street, which isn't far at all. In fact, most days I'm lucky if I can make it to the end of my driveway. So if the pain before was bad enough to warrant surgery, and this is even worse, does that mean that I'm going to need surgery? And do you think that by doing the ESI's and meds and whatever else they may suggest, I'm only delaying the inevitable?

    I'm sorry to ramble. I'm just having a rough night physically and emotionally. My sister, who has a long history of mental illness, self-injured tonight and is in the hospital. She's in stable condition but after 16 years of this, it gets old after a while. Perhaps that's why the pain is so bad tonight. However, my pain levels have been through the roof the last 3 or 4 days. Honest to God, I feel like the ESI made things worse, which is what happened last time I had one.
  • Kim I am sorry this is happening to you. I never had a MD and very glad about it. My PM was really pushing me to the MD but I finally got the other NS opinion and she said no MD, fusion (XLIF). I see my normal NS tomorrow afternoon (after my PM appt).

    I really think you need to see another NS (or 2-3 if you can find them in your area). I know you are working with several doctors, but if you can ask each of them which NS they prefer or really admire, then ask of they will get you a referral.

    I can understand the pain. I have it 24/7 in vering degrees with the added bonus of meylopathy. My life is hanging on by a thread. I am lucky that I work from a home based office and my boss is in another state. I am sure I would have been fired months ago if I had to report in to the office daily. The house looks like a tornado blew through it... We will have a family cleaning day this weekend and it will look good for a few hours :)

    I have had poor- mixed results with the ESI's and swear once the last one wore off I was also in a bad flare. I would take another one in a heart beat if I could right now... I am miserable.

    Most of us know what you are going through. This is my third spinal issue in 4 years. I am personally ready for a nice break. The stress of trying to work, keep house, be a wife and mother is really adding to the pressure to try and find a reasonable treatment. Add in the financial burden this is causing/will continue to cause and I am at my limit.

    From one mess to another mess *** >:D< *** hang in there. When you hit rock bottom there is only one way to go and that is up :) it will get better.... It has to get better.


  • Kim I just have a question, and please don't take any offense, as none is intended. You keep saying that you regret having the surgery. I remember you saying that the surgery helped with the pain that you were experiencing pre-op, and the pain you are having now is on the opposite side. So, why do you regret having the surgery? Have the doctors said that your new pain was a direct result of it, or is it a cause of new(er) injuries on the other side?
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
  • Kelly - Great question; no offense taken.

    While the surgery did help with the pain on the right side, I feel in my heart that it somehow placed more stress on this other disc, which caused it to worsen. My NS deems the surgery a success, because it took care of the initial pain. He claims that this would have happened anyway. The MRI's and CT myelogram all showed multiple disc herniations throughout my t-spine. I had T8-9-10 operated on, and now T7-8 is the one causing the problem. Granted, it was herniated even prior to the surgery, but it has gotten worse. My surgeon said most herniated discs resolve on their own within 3 months. However, this disc has at least been herniated since Nov 2010, which is when I had the first MRI. So it's way past 3 months and it has gotten worse based on a new CT scan and MRI.

    On the flip side, my PM doc was furious about the fact that the NS has deemed the surgery successful. By the time I had my 2-week post-op visit with the NP at my NS office, the pain was much better. Later on, that VERY day, is when this left-sided pain started, and it's been downhill ever since. My PM doc said you can't deem the surgery successful after only two weeks of no pain, especially now that I'm in even more pain than I was before, even if the pain IS on the other side.

    So my thoughts on it are kind of mixed. I go back and forth on it. Some days I think to myself that this would have eventually happened anyway, but it just seems so ironic that it suddenly started acting up only two weeks after the surgery.

    What are your thoughts on this? All opinions are welcomed!
  • dilaurodilauro ConnecticutPosts: 9,841
    I believe the initial surgery was necessary. You were in pain, you started to see doctors to find out what was wrong. They identified the problem, presented you with options and there was a joint agreement to have the surgery.

    What happens after wards is where there could be some questions. For so many of us, post-op we feel good, the original pain is gone and now we are going through recovery pain. Its a big relief. Here is where so many of us get into trouble. We start to do things sooner than we should. I can not tell you how many things I did that I shouldn't have, which I had to pay the price later.

    I started looking over some of your posts, but I seem to remember that shortly after surgery, you started experiencing pain after picking up your children and also doing some household chores.

    Its a fine line here. We know you need to rest and follow restrictions after surgery, but at the same time, you have to keep the family going. Its a major dilemma.

    Could some of your pain be associated with those things? Hard to say.

    Its hard to figure out your rapid downhill slide in terms of pain. Could the ESI contribute? I've never thought so, I've had so many, but I know with the last two I had in my shoulder and hip, my problems rapidly deteriorated.

    You are doing the right thing by upturning all stones to identify what is your exact problem.
    Then when presented with all the facts, you will have
    a new decision to make.

    Kim, if the review of your situation comes out to say, another surgery is required, what do you think your answer will be?

    Thats the time I would want to be as close to 100% sure what actions are correct. Get the second and perhaps a third opinion, only so that you know that all the medical professionals agree on what should be done.

    Hang in there

    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • Kim,
    I had days I felt better after my fusion also. Actually I had ups & downs. Went for different types of PT & thought I had it under control.

    Ron you so right. The surgeons give a recovery time, for example 3-4 months but actually it takes a lot longer & people tend to jump back into things as I sort of did. Not to mention the days you feel good & do more then you know you should.

    I was coming down off my medication, not even a full month going into my fourth month post op & the nerve pain it, not the same pain as pre-oop. I'll always wonder if I did something wrong. I was not going crazy but I was not taking the same care I should of.

    These surgeons should warn patients just how long it actually takes to fuse & recover. I know mine did not do that & as I started doing research I discovered it takes a long time to actually fuse & recover from spinal surgery. Even my shoulder surgeon said it could take up to a year for my decompression on my shoulder so I should have known better.

    My next stop is the Rheumy also. Swelling a lot & my PM wants it checked out. Sometimes it seems never ending.
    I'm sorry about your sister, how very sad & how difficult it must be for you.
    Good luck & god bless. Faith
  • Thank you for your feedback, Ron. I do believe that I overdid it in the early stages, so it's definitely possible that I brought this on myself. As you said, I started feeling pretty good and thought I could do more than I really should have been doing. I was "good" and knew well enough not to lift my 3-year old, but my 19-lb 1-year old was a different story. I figured it was only 9 lbs more than my given restriction, so what harm could it do?

    The thing is, the discs that I had operated on looked fine on the most recent MRI. It's a new disc that is acting up, which leads me to believe that this has nothing to do with me going against my restrictions. And when I questioned whether this could have been a result of the surgery or even of not completely abiding by my restrictions, the NS said this likely would have happened anyway.

    Honestly, Ron, I'm not sure what I'll do if it is determined that I need to have another surgery. On the one hand, I know I cannot keep living like this, and I feel like I am getting close to exhausting all of my options. On the other hand, I just started this new job and I don't want to risk losing it. However, I feel selfish thinking that my job is the #1 reason holding me back, because since this new pain started, I'm barely able to function. I can't cook, I can't clean, and most of all, I can't even load my kids into their stroller and bring them for a walk. That, right there, should be my number one reason for going through with the surgery, because my kids NEED their mom back.

    I guess I'll wait to see what happens at my follow-up on the 27th. Wow...hard to believe that's only 11 days away.
  • Kim, I have to say, I've definitely noticed a shift in your posts, you're certainly not as panicky as you were at first!

    I think as your surgeon does, the offending disc now would have gone anyways, and most likely has nothing to do with the surgery, but then again, who knows. We probably never will know, so there's no sense in dwelling on it. I think that the surgeon said it was successful so early on, because the pre-op symptoms were gone immediately after. Having said it was successful though, doesn't mean that we can just jump right back into life and ignore the restrictions that are placed on us and not give our bodies time to heal. But I know that you know that.

    I wish you luck on your follow-up, and hope that the ns has some more answers for you! You are right, your job should not be the driving factor as to whether or not you go ahead with the surgery. If they were willing to wait for you before, they will most likely be willing to wait for you again. Maybe go and have a chat with your supervisor and the HR people to put your mind at ease, and if it isn't so, well, then at least you know and can carry on without that hanging over your head. We get to the point where we have to weigh the pros and cons of going through with surgery and decide what's more important. I think you've already made that decision. Good luck!
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
  • Thank you for your feedback! You are definitely right...I'm not panicking as much as I was before. I've decided to just go with the flow and roll with the punches. I've learned that I can't control the fact that I'm still in pain and that I may eventually need another surgery, but I CAN control how I react to it. I also CAN control what conservative treatments I try, in order to possibly delay the surgery. Although, unfortunately none of the conservative treatments are really helping. The TENS unit sort of helps to distract me, but then again so does being at work.

    I'm still uncertain about whether I want to do another ESI, just for the heck of it. I see my PM doc on the 26th and the NS on the 27th, so we'll see what both of them have to say.

    I actually have a couple of questions, though. First of all, do you think I should talk to HR and employee health about this now? Or do you think I should wait until I know for sure whether I'll be having the surgery. The employee health nurse actually called me today to follow up on my restrictions. I told her about my next follow-up appt and that I will get updated restrictions. I also did tell her that I have another disc acting up and that I'm in a lot of pain still, but I didn't really go into it with her.

    My other question is about the meds. During the day I typically don't/can't take anything since the meds usually make me groggy...particularly the oxycodone and flexeril. As long as I'm sitting or laying down, the pain isn't too bad. Having my girls so close in age (16 months apart) is a blessing because they entertain eachother, so I'm able to just sit on the couch for the most part. Then when DH gets home from work, he takes over. However, by that time the pain is usually pretty bad. Some nights I try to just go to bed, and I'll wake up in the morning feeling okay. Other nights the pain is so bad that I end up taking the meds. I'd say on average I take them 3 to 4, maybe 5 nights a week at most. I take 15 mg of Oxycodone and 10 mg of Flexeril (as prescribed by my doctor). However, recently I notice it's not helping as much for the pain. I also notice it doesn't make me so drowsy anymore. My question is this: is this what is meant by developing a tolerance? What happens when someone develops a tolerance to a medication? Does this mean that they will need to increase the dosage, or would they typically add in another medication? I am definitely going to talk to the PM doc about this at my next appt. Ron and I have talked about the fact that I probably need some extended release meds that I can take during the day to better control the pain. Then I can save the other meds for breakthrough pain. So that is on my agenda for my next appt.
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