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Total frustration here

AnonymousUserAAnonymousUser Posts: 49,671
edited 06/11/2012 - 8:19 AM in Lower Back Pain
Hi everyone,
Can you guys give me some feedback please? I really don't know what to do now. I had neck fusion in Jan. of 07. I got that one under control, only to have bad back issues now. I think all of this stems from a terrible ice fall Dec. 2000. I think it has all caught up with me. I am 52 now. The back started getting bad around May of 07. I didnt get much time after the neck fusion, till the next nightmare. I was in NYC and walked A LOT. I noticed at night, I would be limping badly from all that walking. It mostly hurt in the butt and hip. Well then I would notice when I substitute taught, I wold be limping so bad by the end of the day, it was pathetic. I was working on my neck in PT because during that same NYC trip, I torqued my neck and it was really hurting, so the back got neglected. I finally saw the rehab. Dr. about the back and I didnt have an MRI or anything and he sent me to PT. (last Nov).He thought it was either facet joint issues in the lumbar spine or SI Joint. So the PT was a pelvic specialist and treated me for the SI joint stuff. Well, unfortunately, a month into PT, the therapist started her own office and didnt take my insurance. Then I had other health issues for several months and again the back got neglected. I finally went back in April to that PT, who then was taking my insurance. I went from April till a week ago. NO HELP. She was great at hands on soft tissue work, but I couldnt get out of pain enough to do the exercises consistently. Fast forward to now. I have had 2 sets of facet joint injections....NO HELP. Oh yea, and they did the SI Joint both times too. Very minimal help. Now my Dr. says he doesnt think its the SI Joint. My MRI that I finally got says stenosis, bulging disks, and arthritis at L3-S1. When I stand or walk its a nightmare. Walking kills my hip and back, and standing mostly kills the back. I am totally becoming a hermit already here. I dont want to do anything, I cant work, because I cant stand up and teach, even a half a day. I have had 2 epidurals, which helped, but for only like 5 days. Then poof....its a nightmare again. Dr. wants to do one last epidural. (I guess cause they like do it in sets of 3). But frankly, the steroids are driving me nuts. I have been on them since early May. Must I take more for nothing???????????? I am not sure the Dr. even knows what exactly is causing my hip pain and limping. My PT is positive its the SI Joint. And the dr. thinks its referred pain from the lumbar. I see the Dr. on Tues. and I am thinking of telling him, forget the 3rd epidural. What do you think??????? Now I am totally wondering if my PT was a freaking waste of time because it was for the WRONG thing!!!!!!!!! I met my out of pocket max for my insurance, which means a surgery would be covered at 100%. (until Jan 1, 2009).I went thru this exact scenario with the neck. I scheduled the surgery in Dec. and then we had a blizzard and it had to be postponed. I ended up paying a fortune, because my out of pocket max was not met for a new yr., just the previous yr.I DO NOT want to have that happen again. How the heck does the Dr. find out just EXACTLY what is causing that horrible hip pain??? I dont want surgery when they dont know what is totaly going on. The Dr. keeps doing the epidurals in the lower lumbar, even though L3-L4 is bad too on the MRI. Now I am wondering if I have hip arthritis. Its not like it has been X-rayed or anything. I would be really pissed off if it turned out ot be hip arthritis as the cause of my hip pain. After all I AM 52. I dont know what heck to say to my Dr. on Tues. But I feel a big cry coming on when I see this guy. I know it.


  • Hello SKZ. I to am 52 years old and although the majority of my pain is in the lumbar I also have what my pain specialist would call reflective pain caused by the lumbar issues. My right hip gets fairly painful after even short walks and usually once that starts the pain tingling and numbness travels down my leg to my toes. I had been treated very conservatively by my primary doctor of 25 years up until 2 years ago when he finally sent me to a pain specialist. I had an MRI which showed bulging and degenerative disc the entire lower spine and they to started the epidurals. 1st on helped for about 2 weeks and at my next visit they did another which totaly aggravated the L5 L4. They tried 1 more a week later and this had the same negative result. At that point they did a discogram of my spine and their they discovered tears in 3,4 and 5 is ruptered and leaking into the what I think he said epidural channel. What the Psyciatrist told me that because of the condition of my spine I was not a candidate for surgury due to the fact that if they repaired 1 or 2 disc the rest would follow. So at this point I am doing PT which does not help much I use a TENS each day wear Lidoderm patches, take 120mg cymbalta, 100mg norflex and vicodin es 4 times/day. What they are thinking in my case in a spinal stimulator which I have heard mixed reviews on or a pump. I am not sure I have helped you in any way but all I would say is that getting a good DR one who preferrably is trained in pain issues and be certain he or she understands your pain issues is imparative. I wish you luck and hope you get feeling better soon.
  • I dont understand exactly why you arent a good surgery candidate? Do they mean if you had a fusion, the levels above and below would degenerate quicker?
  • Hi Skz and jd,

    My situation sounds very similar in some ways to the two of you. I have had the PT, 2 sets of Selective Nerve Root injections, Facet Nerve Root injections, one of which left me with a puncture in the duramater of the spinal cord and Epidurals, which did nothing, so why do the 3rd, you are right.

    I have mild Scoliois, DDD, had a lumbar discogram, which by the way, was no fun and in a report I just acquired, it states, the discogram indicated "concordant pain at L3-4,and L5-S1, and a CT Scan revealed evidence of anular tear in both, but the surgeon did not feel surgery would be a good solution for me because it would require an L3 to sacrum fusion which is "extremely morbid" and it would fuse the L4-5 segment even though I was not presently having pain from that area.

    I found all this out recently when I had to request my medical records; prior to receiving these records, my Surgeon had previously scheduled me for fusion surgery! The report does not indicate anywhere that he had discussed fusion surgery with me and my husband on the 2nd appointment. This report also says I, the patient agree with this pain and for this reason would like to be evaluated by a pain therapist for nonoperative modalities. None of this was discussed this with me.

    Well, I know it was because he found out from my Neurologist I had a mild stroke in 2001. But, we never understood why he waited until my 3rd visit with him when we were going to schedule the time and date for the surgery, that he was very distant and different from any other appointment and said due to my bone density report revealing "osteopenia" he could not do surgery. He wasn't too eager to answer questions about the possibility of any other procedures less invasive that might be done now or at a later time because of the terrible pain I was having.

    My husband was a little put-out with him because he wasn't more upfront with us and explain to us at that time it was because of the "pain syndrome" as a result of the stroke" I mean, what was the big deal? I understand, I had a stroke, however, my husband never thought of it interfering with some type of surgery if it would help my back. We realize there are risks when having any type of surgery. I'm sure he had his reasons, but we felt we were somewhat left hanging so I called his office several weeks later and talked to his nurse to find out why he was so "rude" to us, why for months he was preparing me for surgery, then to just suddenly come up wih osteopenia. She said I was "no longer" his patient, that he considered me a "high risk" patient and I would need to see an anestheologist before any surgeon would perform surgery on me.

    I had been seeing a PM doctor for 7 years who was a Professor of "Pain" at a well known university, and was an anestheologist! Oh well, I really wouldn't him to perform surgery on me anyway. (lol).....

    The only way you would know I had a stroke is if I told you or you read it about it on my medical reports....Uhm, E'rr, well, maybe talk to me.....I forget words, I have some cognitive problems, I just laugh them off (lol). But, the hemorrhage was rare in that it was in the thalamus and left me with a rare pain syndrome, but it is called "central pain syndrome". Many people with spinal cord injuries have central pain. It affects my left side with constant pain down my left shoulder, arm, hand and fingers, but I am certainly able to differentiate between that pain and my back pain. In fact, if I would let it, the pain in my back could completely bed-ridden me, that is how much worse it is. There are days I give into my pain, and spend it lying down, taking it easy, I just have to, but I have always used "distraction" with my other pain syndrome, however with this back, distraction does not work very well. And, even though my husband is wonderful to help, there are still the constant day to day chores that have to be done.

    Since that report in 2005, my back has worsen, I just had a MRI that indicates spinal stenosis in L5-S1 and don't have the report in front of me, but have a small bulge in another disc, but I am in much more pain. And, I don't know why, but I just cannot walk anymore without the pain increasing and becoming so bad, I want to find someplace to sit down. I really do try to keep going, to the store, play with my grandson, anything I do, I pay for it dearly.

    Because of me, my husband and I do not socialize like we did at all. We just attended a wedding reception for a few hours and it was painful just getting ready, and while I enjoyed seeing so many friends I hadn't seen in so long, I couldn't wait to get home and to bed (lol).I would just like to being able to enjoy our grandsons, family and friends, it just seems to be more difficult with time.

    I really am thinking of trying acupunture, it's the only thing I haven't tried.

    My best to both of you, all of us here understand in one way or another. They can send men to the moon, I sure wish they could find something to help our backs :?

  • from what I understand it is very hard to diagnose where exactly back pain is coming from. Alot of times the epidurals and injections are not meant to "cure" your back pain but are used to diagnose what is causing your pain. For instance if you are given a facet block and the pain stops even for a short time they could say that the pain is coming from your facet joints and know how to proceed to treat your pain. So, most of the time the injections are not really a waste of time.
  • Hi SKZ The doctor I see at the pain clinic and the one that did the discogram told me that because of the condition of the entire lower spine that fusing the L-5,4 would likely hasten the degeneration of the above discs. I have not gotten a second opinion yet I am just waiting to see what options they come up with. Good luck
  • I am hoping they will do a laminectomy, at least, because of the stenosis.
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