Total Frustration Here

  • Thread starter Thread starter SKZ
  • Start date Start date
S

SKZ

Guest
Hi everyone,
Can you guys give me some feedback please? I really don't know what to do now. I know this is repetitve for a lot you, but just want to make it easier to understand. 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 would 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 (last Nov.) when my neck was better...and I didnt have an MRI or anything and he sent me to PT. He thought it was either facet joint issues in the lurabar 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 hanRAB 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, (at L3-4...central canal stenosis and foraminal and only foraminal at the other levels.)..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 just 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 help, but for only like 5 days. Then poof....its a nightmare again. Dr. wants to do one last epidural. (I guess cos they like do it in sets of 3). But frankly, the steroiRAB 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 lurabar. 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!!!!!!!!! Maybe I should have been doing lower back exercises more. I ddi try some on my own (on the ball) and now I am even worse, though. (yea, I am feeling desperate).I met my out of pocket max for my insurance now, which means a surgery would be covered at 100%. (until Jan 1, 09). 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 the new 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??? Idont want surgery when they dont know what is totaly going on. The Dr. keeps doing the epidurals in the lower lurabar, 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. I am so bummed out about how limited my life is now. I can't hardly walk (not good in COlorado). It makes me not want to go out and socialize at all. If I need surgery, I just want it done already (AND PAID FOR). I can totally see time going by and me ending up with surgery in like Jan. and me going broke again.
 
SKZ, I feel your frustration, I really do. I have facet joint arthritis, and SI Joint arthritis, and it can cause terrible hip pain.

But more then anything else, have you considered seeing a different doctor? Perhaps find the best you can find and bring your films? (they belong to you, you can just ask for a copy.) It strikes me that your current doctor is not really focused on the most effective therapy, but is instead focused on a set routine whether or not its the best for you. My life changed when I switched doctors after finding one who had astonishing expertise in spinal problems, far beyond the one I had before.

I know it's always best to do all that can be done that's non-invasive, but sometimes when I hear about MRI results and the kinRAB of problems there are, and then hear PT is ordered, I wonder what they expect PT to do? It won't cure stenosis, it won't rebuild collapsed discs. Sometimes I sense we're all put on a treadmill of "this is the list of recommended stuff (probably from an insurance company) and we won't do more until this list if checked off."

My first doctor kept ordering PT for me, even when I told him PT was making everything far worse. I have great insurance, but my copay for PT is $25 per session, and when you're going at least 3 times per week that adRAB up pretty quickly! We were doing mild isometric exercises and some mild stretching, and it resulted in massive large muscle spasms while I was attempting them. The more we did it, the more spasms I would have during PT and afterwarRAB. My PT agreed I needed to stop, and at my next visit I told the doctor what happened. The next day the PT called me to tell me the doctor faxed over an order for me to continue. I was appalled, I had just spoken to him the day before. As you can guess, I refused even though the PT told me they would "tell on me." As I explained to her, *I* am the one shelling out $75/week for something that's making me feel worse, not the doctor. He was already told, by the PT and myself, that there was something wrong causing spasms.

Although I had my films I didn't have a copy of the radiologist's report on my MRI. I ordered a copy and was horrified to find I had a herniated thoracic disc. The doctor never read the report, just looked at the films at the lurabar region. Here was the explanation for the abdominal and rib cage muscle spasms and he hadn't even read the report. I was furious.

I left this doctor after another visit or two of useless garbage, and found a fantastic doctor who is fellowship trained and has only done spines for 20 years. The switch has changed my life...perhaps it's time you do the same?

I hope you have some relief.

Paula
 
Well, I am going to go to my appt. on Tues. and explain my total frustration. I think he is a knowlegable Dr. Its just that he is so damn quiet. I have to pull teeth with him. He seems to be really caring and he never rushes you out of there. His ego isnt real big, which is a first for me. So I am going to try my best to see what the best next steps will be. I think he is going to end up referring me to the spinal surgeon who did my neck, sooner than later. I would rather him refer me than to keep trying stuff endlessly that doesnt work. Been there done that. I may have to do the final epidural though. I notice when I have the injections, he does ask me questions as he is going them....like do you feel it here.....etc. There is one level that he does that I totally feel it in my hip. Its hard to know because when you are lying on your stomach and not putting weight on your body, where exactly the pain is. I think its time for him and me to have a heart to heart. I have never cried in front of the guy. When I had my neck stuff, I cried in front of everyone of them. I think I will be crying this time. I am at that point and he neeRAB to know it, too.
 
I have a herniated disk that is causing hip and leg pain due to pressure on the sciatic nerve...it's likely not arthiritis in your hip, but your disk. The limping, pain when standing and walking...it all sounRAB exactly like what I have.

I am not considering surgery an option, as it is slowly improving on its own with lots and lots of rest.

Hope your doctor figures it all out and gets you on the right track for you.
 
Thanks you all for such great replies. I have formaminal stenois at L3-4, L4-5, and L5-S1. I only have BOTH types of stenosis at L3-4, and L4-5. (bilaterally). Also, It says I have hypertrophy of the ligamentum flavum at L3-4. So you think all that L4-5 stuff could be causing the hip pain? I have bilateral facet arthropathy at all 3 levels. and disk bulges. Both for sure both kind of stenosis at L3-4, L4-5. I really feel like the stenosis is the big issue. The thing is, I dont have LEG PAIN. I keep reading LEG PAIN is the think that surgeyr helps. I have a small amount of sciatica under my butt cheek on the better side that doesnt hurt so much.
 
Can anyone help me i would like to start a thread, but cant? Where do i go...thankyou.
 
onthegomom, you have a problem with the disc having herniated and it is for that reason you have compressed nerve roots. SKZ's MRI indicates stenosis which is an entirely other issue, one that will not get better from rest. They both can cause compression of the nerve roots, so the symptoms can be the same.

The foraminal stenosis can cause every bit as much pain as central canal stenosis. Are the levels below L3-4 affected with this? Often the hip pain is referred from the L4-5 nerve roots -- L3 is a little high up for that, and the dermatomes for most people for L3 runs across the top of the buttocks and out to the side of the thigh (**on most people!!)

If it is determined that stenosis is causing your pain, the only reliable way to treat it is with surgery -- kind of a roto-rooter procedure where they go in and clean out the spinal column to get rid of whatever is clogging up the area --bony overgrowths, arthritis, whatever.

Why don't you specifically ask your doctor about the stenosis? They always try the injections and PT first because in some people it will alleviate the pain and surgery can be avoided. You don't know til you try. Also, it is obviously a lot safer than surgery which has its share of complications and sometimes doesn't work, or makes things even worse.

Have you had x-rays of your hips?
 
Go back to the first page of the Back Board and you will see a little box on the left near the top of the page that says "New Thread." Just click on it and a new box will open up where you can post your question or comment.
 
Back
Top