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Agonizing pain. Have questions.

L333777LL333777 Posts: 109
edited 08/03/2014 - 3:42 PM in Lower Back Pain
Hello All- while I have been reading posts on this site for over a year, this is the first time I have posted. A little background: I hurt my back a little over 1&1/2 years ago. Initially, an MRI showed a bulge at L4-L5 & a L5-S1 3mm herniation with an annular tear. Since that time, I have had 5 esi's, 2 bilateral facet joint injections on 3 levels, & 2 bilateral rhizotomies on 3 levels. Most of these with varying degrees of temporary relief. Of course I have also had periodic medrol packs, Toradol injections, & pain management. Fast forward to about 1-2 months ago. I started having episodes of increasing pain down lower left back, thru buttock, & back of thigh. I had my 5th esi about 2.5 weeks ago (last rhizotomy was March 2014). This esi procedure was the first one that was excruciatingly painful, to the point that I screamed out! While expecting some relief, things got worse quickly from there & continue now. I went in for my follow-up this past Tues, and they saw that I needed boyfriend to help me stand up & walk. Dr ordered new MRI, an EMG (couldn't get me scheduled until 9/2), started Gabapentin & Mobic, and sent referral for Neurosurgeon consult. I had my MRI on Friday & report was ready just before Dr ofc closed. New MRI showed same L4-L5 bulge, but herniation at L5-S1 is now 9mm with left S1 nerve compression, "moderate to severe" spinal stenosis & narrowing of the neural foramen. On Tues, Dr had said that they couldn't change my pain med (7.5 Percocet) because I had just filled my script a few days before. Well, when he saw the report, he said I could increase the dosage (take 6 tabs/ day instead of 4), called in another medrol dose pack, & told me to get to a neurosurgeon ASAP, but go to ER over the weekend if symptoms worsened or had bladder/bowel problems. He said they would document my records that my meds would be expected to run out early & get in to see him before they do & he will change my medication at that time, but didn't tell me what it would be changed to. I have a couple of questions: I'm terrified to have the EMG (which they are trying to bump up ASAP) bc I have read horror stories about how painful it is & I don't think I can take any more pain. I cannot find a comfortable position to sit most of the time & to get up from sitting or laying (also painful), it triggers an episode of pain that words cannot describe, from my lower back, down the entire length of my left leg. The episode can last 2 minutes or 10 -15 min,I never know. It feels like someone jabs a knife in my lower back, then tears it down thru my buttock & down my leg & then sets it all on fire. It also feels like all the circulation to my calf is being cut off and my calf is gonna be squeezed off my leg! This also happens if anything (like edge of seat, bed, toilet, etc) rubs against my buttock or back of my thigh. I'm wondering- is EMG really necessary, since the MRI already showed what is going on? Has anyone had this test for similar symptoms/MRI results? I forgot to mention, I have been avoiding surgery for a while now. I had a consult last September (before first rhizotomy) & neurosurgeon found that L5 is "shearing out" off to the side. He advised me to "exhaust all other measures" bc he said if he takes me to the OR, it will be for a fusion. I think I've exhausted all other measures, including Traditional Chinese Medicine modalities. Can anyone with similar dx and/or symptoms share their experience & whether they had surgery & if so, the outcome. I have a 6 year old son & want my life with him back. I am in agony, what seems like, all the time. I try not to let him see how bad it's gotten over the past few weeks (he was on vacation). I'm also still working as much as possible (I'm a licensed mental health counselor), but every morning I am tempted to go to HR & start my ST disability insurance. I have difficulty getting dressed & can no longer get shoes on unless they are slip-on kind. I bite the bullet through client appointments & last week was reduced to tears, after my last client of the day left because the pain was so bad when I stood up. I am trying to put off taking ST disability bc I'm in the process of refinancing my house & also bc it will force me to exhaust all my banked sick & vacation time first (which I try to save in case I need to stay home with my son), & bc ST disability will only pay 60% of my salary, which is not much bc I work for a non-profit who has had a raise freeze in effect for about 7 of the 8 years I have been there. I say all of this, but that decision is getting harder every day & I just don't know how much longer I can get up, get dressed, drive myself to work ( which has also become very painful), & get thru the work day. Looking for some ideas, advice, similar experiences. Thanks so much, in advance.
8/28/14 Discectomy, Laminectomy, Foraminotomy L5-S1
9/15/15 Surgical Debridement of infected surgical incision & drain seroma; wound vac applied
10/21/14 L5-S1 Osteomyelitis & Discitis; 10/23/14 Bone & Tissue Biopsy = MRSE


  • Hi I can only offer my past experience to guide you. Four spinal surgeries (1 herniation, 2 fusions, 1 synovial spinal cyst and then a fall and I broke my back) The EMG I had recently done by a specialist was so much easier than the first one I had 8 yrs ago. It is made more difficult when you're already in agony. Ive found when I am in extreme pain the EMG is more painful.Use pain meds before the test. I also recommend a valium like drug to keep you calm when you very agitated from the pain. I actually found that it worked better than narcotics, Im glad I took the test, as I do have verifiable nerve damage.This will make qualifying for any disability insurance much smoother. I got to the point where I had no quality of life. I begged for surgery and though a difficult recovery Ive been doing very very well until recently. Thats off topic here anyway. I had 2 fusions without hardware. One graft came from my hip, on the 1st surgery, and found that my hip hurt immediately after surgery. No spinal, calf or foot pain at all.Second surgery also with out hardware came from donor bone. I learned a good lesson. Donor bone is the best way because you don't have to spend at least a year or two in pain from the hip site. NO one told me this. Ask your dr about donor bone. You have gone the full route of injections, meds, all the while in agony. Im afraid when I was in your shoes I surrendered to surgery. I had 2 young kids and had to be a Mom.I felt immediately better in the recovery room but the recovery is long, slow and painful. I can't imagine or guide you if you need hardware installed. Ive never heard really good things about it from my fellow spine girls on this site. Use ice in a dbl ziplock bag and try to naturally brig down the pain and inflammation, Trust me, Ive been in your shoes many times. Try not to be scared, it makes you anxious and then the pain goes even higher. Thats why I suggest a tranquilizer. If you are on the bed cut open a large garbage bin size and open it and spread it under you. You will be able to roll and chafe position much easier. You kind of slip and slide. Your narcotic dosing is high. Persoanlly take 4-6 Percs a day messes with your totally, right? Make sure you take 2 stool softeners at night. I know this is the most painful and stressful time of your life. Get as much help as you can and if you can't move, its surgery time. Ive been dealing with this since i was 35, Im now 60. I get along fine most of the time but i know I have a chronic condition that will have flairs. Please keep me posted on what your dr.s find out. Im here for you in any way to raise you and lift you up.
  • Thank you Vicki for your reply and sharing your experience. I will definitely try your suggestions. I am in a great deal of pain most of the time. Often I am hitting a 10/10. That is one of the reasons I am so scared to have the EMG. I cannot imagine more pain. I will take your advice about the pain meds beforehand. I don't take Valium, but do take Flexeril at bedtime. Maybe the Dr. will prescribe a Valium for the purposes of the test? Thank you again for the advice and I'm sorry that you suffered for so long. I am 43 and was told by neurosurgeon last year that I was considered "young" to have hardware on my spine, but our conversation did not go beyond that to other methods bc he wanted me to exhaust all other txs first. I think I am there, though I would still like to avoid it. I am hoping that whatever is done, can be done by minimally invasive technique. I have a 6 year old to keep up with and support. I pay for ST and LT disability insurance through my employer. Is there some qualification that I have to go through to get those benefits? I thought I just had to be out of work sick for a certain amount of time. Thanks again for your help.
    8/28/14 Discectomy, Laminectomy, Foraminotomy L5-S1
    9/15/15 Surgical Debridement of infected surgical incision & drain seroma; wound vac applied
    10/21/14 L5-S1 Osteomyelitis & Discitis; 10/23/14 Bone & Tissue Biopsy = MRSE
  • hi there l333777,im so sorry to hear that your in so much pain all the time, it can be a real challenge, i know.I live in chronic pain daily and dont have any days that are eisier than others.i dont want to be rough here but if you are dealing with as much pain as you describe you can tolorate the dreaded EMG,you sound like your pretty tough.i am 43 also and have avoided surgery til now,but back to you, i wish the doc performing the test would have gave me a valium because the fear was the biggest factor and relaxing would have made it easier.from what you told me about yourself you can handle it, im not saying its not painfull but you can do it,its to see if and/or how much nerve damageyou have.hang in there,im rootin for you.
  • L333777LL333777 Posts: 109
    edited 08/04/2014 - 4:15 PM
    Hi naildriver93- thank you so much for your words of encouragement. They mean a lot. I like to think I am fairly tough. I really do try to fight through this pain. Had to go work today & it was a lot of getting up, sitting down, getting up, sitting down. As I've described & I'm sure you know, that is extremely painful. But what else can you do, but put your head down grit your teeth and plow through. I'm sure you & Vicki are right & the fear of the unknown is what makes it worse, as far as the EMG. I've just read so many personal stories of how it was complete torture, with some not even being able to finish the test. I know I have to do it & I will, I just wish I didn't have to. Today brought yet another test of my patience. As I had found a neurosurgeon on my insurance company's panel, who has nothing but raving reviews. I have been really excited to schedule an appointment with him for a 2nd opinion & who I likely would have chosen to do my surgery, if that's what he deemed necessary & if I was ok with his plan. When I called this morning, I was thrilled that they were going to be able to squeeze me in to be seen in a couple of days. I was quickly brought crashing down, when they said that he no longer accepts my insurance. Apparently, the insurance company had not gotten around to taking him off their list! I do have an appt with another neurosurgeon on 8/19 & he is supposed to be an excellent dr as well, but I wanted to have a few opinions on my case. Also, 8/19 seems like FOREVER from now. I called today to see if there were any cancellations, but there are not. They said I can check again next Monday. I am right in the middle of a Medrol dose pack and I am getting a bit of relief it seems sometimes, but I know the pain will be back with a vengeance once I finish them. I went & bought a cane this evening (what a sad experience that was). I need it mostly first thing in the morning & then later in the evening for right now, but I know that will soon change. Well, thank you again for taking the time to reply, the encouraging words & the positive vibes. I really do appreciate it! All the best to you as well. I hope that things will turn around for you & that there will be many good days in your future. :)
    8/28/14 Discectomy, Laminectomy, Foraminotomy L5-S1
    9/15/15 Surgical Debridement of infected surgical incision & drain seroma; wound vac applied
    10/21/14 L5-S1 Osteomyelitis & Discitis; 10/23/14 Bone & Tissue Biopsy = MRSE
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