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Don't know what's wrong with me - not a textbook case - need some validation...

hermajestyaprilhhermajestyapril Posts: 17
edited 06/11/2012 - 8:26 AM in Lower Back Pain
I've been experiencing extreme pain in my lower back/buttocks for about 3 months. I've gone through 2 months of physical therapy with little to no relief. MRI shows a broad-based protrusion of L5-S1 disc and DDD of L4-L5 disc. The pain is mostly when I sit. To be able to work, I have to recline my chair to a ridiculous angle and sit with either an ice pack or heating pad and tens unit at all times. Doc gave me Tylenol 3 & Flexeril during the day and Percocet at night. Nothing gives me much relief but laying down and even that hurts sometimes.
I had an appointment with a Neurosurgeon today and he said based on the pictures I should have pain radiating down my left leg and weakness, but I have neither. Sometimes it hurts in my joints on one side or the other when my back is bothering me, but only occasionally. The pain is pretty much equal on both right and left. It mainly hurts in my lower spine area and in my upper buttocks.
The pain is severe enough to bring me to tears at times.
The Neurosurgeon wants me to have a direct nerve injection on my left side only to see if surgery will even help. He says not all my puzzle pieces fit together.
I went in feeling hopeful, like there would be a resolution to my problem, but now I'm feeling hopeless because I don't fit their perfect mold of a textbook case.
I hurt so much and it affects every part of my life. I'm a computer programmer by trade so not being able to sit for long is really affecting my home life and my work life.
I don't know what to do.
Any help/suggestions are appreciated.
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Comments

  • They have ones where your shins take upo most of the pressure, not the buttocks or back. They have also come up with ball like chairs. I know-lame-but these might help you get through your work day.

    Also get a second opinion. I had my first opinion and I was surprised at how quickly the neurosurgeon dismissed my case with, "oh it's such and such- causing this and that-now you need this operation". I didn't feel like I could ask questions about his diagnosis. I went to a second and even third NS!

    I've had my cervival spine surgery now and I feel like I was a partner in the operation-not a nameless spine patient. Find one with LOTS of experiences and one who reads his own films-not take the word of the radiologist!

    Good luck and don't give up hope. We all will tell you-it takes months-and lots of tests-and lots of pain sometimes to find the right solution.
  • Thanks, Turtle. (BTW, that's my dad's nickname for me!)
    Unfortunately, I don't have many choices for NS. I work for a Multi hospital/clinic system and we only have 2 NS on staff and one is retiring in Jan. If I go out-of-system, I will pay through the nose and won't be able to use my short-term disability pay (which I have LOTS of saved up) right away. The NS that I'm seeing is supposed to be one of the best in the area, which granted is small, but he has a specialty in Complex Spinal Reconstructive Surgery from Mayo. I know he insists on reading his own films and will only read them if they're printed.
    I just felt today like I didn't fit in some mold and have no idea what will fix it. He said he's sending me to get some injection right into the nerve on the left side only to see if this surgery will help or not. I'm worried - what if it doesn't help? What if the pain is the same? I already told him it hurts equally on the left AND right.
    Thanks for your kind words, Turtle, it helps to know I'm not alone going through this.
    My husband is kind and helping me through, but he doesn't really understand what I'm going through.
  • Your Dr. is trying to rule out the source of your pain and hopefully that injection helps you. I agree with Turtle there are special chairs. They also have cushions and donut pillows that may help also. Getting up every hour or more may help too. I'm taking amitriptyline and Lyrica for nerve pain but not sure those meds would help you. I hope you feel better soon and get some pain relief soon. Take care. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • I appreciate your comments - really. It's nice to have company when in pain. I just ordered a exer-ball at Sears.com (NordicTrack 65mm ball on sale for $9.74) and will pick it up after work. I'll try sitting on it at home first. It's sad - I can't even sit at the dining room table (even after putting pillows on the chair) long enough to play decent board games with my hubby. I just feel broken! I am so afraid that this will get to a point where I can't work and that would be terrible. I missed 6 weeks of work about 10 years ago when I bulged 3 discs because I couldn't stand or walk on my own. At least now I can still walk/stand ok - it's just the blasted sitting that hurts.
    Thanks for the suggestion of the different chairs - I'm going to give that a try! :)
  • Hi,
    I hope you get some answers soon, when is your injection scheduled? I agree with Charry, your doctor hopefully is trying to figure out exactly what can help without putting you through too much. As you read more posts you will see that most of us don't fit a perfect mold for back pain. We all wish we had the same symptoms, that could make it easy for any doctor. It seems like each of us has a combination of each others symptoms. With treatment some things work for some that don't come close to working with others. Medication is the same way.
    It is all so confusing, but it is great to have all these people to cheer you on and cheer you up. I hope you and your NS find the answers you both are looking for, try to take notes and write down the questions you have for your NS when you go. I found that helped me explain my symptoms much clearer and it gave me more confidence when I asked the NS questions. I wish you all the best.

    Stacey
  • So is the direct nerve injection a nerve root sleeve injection? If so, then if you don't have nerve pain, don't understand why he is doing that? That test is often done to see if a particular nerve root is the cause of the nerve pain-if the numbing agent injecting relieves the nerve pain, then that means compression at that level and the need for surgery.

    If you dr. is talking about a discogram, that is where they inject the discs with dye and take xrays then CT. The dye helps light up those discs better than an MRI. Also, the amount of dye injected gives an indicator of how much damage is there-if you can tolerate a bunch of dye(pressure) injection, damage not too bad. It's goal is also to reproduce nerve pain. Main goal is to isolate your pain generator/generators.

    I'm surprised that before even a surgical consult, your doctor would have not ordered epidural steroid injections? Many insurance companies require them and physical therapy to fail before considering surgery.

    Please post what you find out in your test, keep us updated!
  • I believe it's the first option. He said if I feel relief from the injection then he is comfortable with thinking that the surgery he's got in mind will relieve the pain. If not, I don't know...
    He said some people feel relief from the injection for 3 hours, some 3 days, some 3 weeks, months... etc.

    Thanks much,

    April
  • j.howiejj.howie Brentwood, Ca., USAPosts: 1,728
    My symptoms were like yours, and everyone wanted to dismiss me because pain did not radiate down my leg. Be very adamant! Some of us are just "wired" different!
    Good luck, Jim
    Click my name to see my Medical history
    You get what you get, not what you deserve......I stole that from Susan (rip)
    Today is yours to embrace........ for tomorrow, who knows what might be starring you in the face!
  • permanent S1 nerve damage, and also cannot sit. I stay home now, reclined 23 hours a day. My limit for sitting, standing or really anything other than reclining is 20 to 30 minutes. My nerve pain burns 24/7 and on a good day, it is a 5 out of 10, but if I have to sit in a car, walk, stand - it goes to 7 and higher quickly. Then takes forever to recover.

    I have no life, and am moving forward with the spinal cord stimulator.

    For me, my pain started in the center of my buttock, 3 years ago. I would dig my fingers in and push hard as that seemed to feel good. Hubby would say "Honey, do you have to do that while we are walking through the mall? lol

    As the pain got worse (and now we realize, the damage became permanent), the burning starting going down my thigh, then my calf, and now all the way to my toes. If I could reach, I could draw a line with a magic marker to show the pain. I do get back pain occasionally, but that is usually from overdoing it and I can take it easy and the pain goes away.

    When I had to take the psych evaluation for the SCS trial, I was forced to sit in an office chair that I also tried to "recline" with my toes while I took the test. I ended up bawling, laying flat on the floor. It took me 3.5 hours to finish the entire visit as I was in so much pain and could not think straight, let alone color in little circles on a computer answer sheet.

    I've had 3 surgeries at L5-S1, now have a stable back, but permanent damage. It all started with the pain in my buttock, and I called it my "RBP - Random Butt Pain". lol Now I have constant burning.

    Good luck with your journey.

    Cheri
  • Thanks for everyone's words of help.
    Cheri - I totally get the butt pain. I do the same thing - put my hand in a fist and press on it because it does seem to help.
    j.howie - thanks. It's frustrating - they say I should be having pain where I don't and I do have pain where they say I shouldn't. Argh. Yesterday he was pushing on my back and asking if it hurt and I told him no, the pressure feels good. And he just went hmmm...interesting...with a puzzled look on his face.
    I had the injection yesterday. The doc said it was an epidural, but only on the left side. 2 injections of the meds total with live x-ray to guide. Let me just say, it hurt like a son of a gun. I was bawling on the table. It's alleviated some of the pain on my left side, but it still hurts terribly on the right and up above and a little on my left hip.
    The epidural doc wants me to come back and see him in 3 weeks to do another set before I go back to see the neurosurgeon - either right and left or in the middle. I don't know exactly what to do. I feel like I'm at the mercy of people who don't understand and don't get the severity of it all. I'm tired of closing my office door to lie on my floor and cry. I'm tired of driving and crying. Sitting does NOT work for me. The doctors are now arguing over who is going to prescribe pain meds too...my primary says they don't "DO" chronic pain and the Neurosurg says they don't prescribe until surgery. Finally they talked and the primary gave me a bit for now.
    Just feeling frustrated and a bit hopeless...
    I've gone from being active and social to being sedentary and unfocused. It's hard to focus on work when I'm in pain.
  • I am so sorry. I know your pain. My life is the same thing, I can't sit and spend the day laying on an ice pack. I stay home most times because driving is hell. This is no way to live, but what can you do?
    I hope the injection clears away any doubts your surgeon has. I also believe that there is no cookie cutter textbook case. It just forces doctors to investigate further.
    In my case when I first herniated L4-S1 with nerve pain down to my foot, the MRI only said there was possibility of compression on both L5 nerve roots. My surgeon sent me for a ct/myelogram and it clearly showed impingement and then I had my first surgery. Right now I'm almost 8 months post op from a 2 level fusion and I still have problems.
    It seems that we all must endure jumping through hurdles to reach the treatments we need. Hang in there, I know it's difficult and sometimes damn near impossible to deal with this kind of pain. Take care
  • Thanks so much meydey.
    So, yesterday was a good day. After the ESI, I started feeling some immediate relief on my left side. Yesterday (day 2) was a very good day. I had a couple points in the day when while sitting back on my ice pack I had no pain. I could walk normally. The pain was very tolerable. It started getting much worse yesterday evening. Today is not good at all. I have pain going into my groin area - like where your underwear line is in the front, and lots in my back. Yesterday I made it through most of the day without any pain meds. Today, I've taken a Tylenol 3, a Percocet and a Flexeril and am still hurting a great deal. I've taken breaks - even laid on a couch here at work and am still in a lot of pain. I was so hopeful yesterday with the pain SO diminished and today I feel so much worse. I DON'T UNDERSTAND!
  • I'm sorry that you didn't get ongoing relief with the ESI. They only work temporarily and the range varies greatly. Some get relief for 3-6 months, some for a week, some for a couple days, and like me no relief whatsoever. It's not your fault. I know that after the surgeon performs the direct nerve injection that he will know for sure what is causing your pain. It's typical that they go through the motions of ruling out things before they feel comfortable proceeding with surgery. Meanwhile, try to hang in there. Take care
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