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Just Want to Vent and Talk

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13

Comments

  • Something to consider... In your first post you list "unremarkable cysts", I have cysts & my surgeon says "if cysts are causing pain you would get substantial relief when sitting". He's a respected specialist with some famous patients who could afford to see any surgeon in the world. Given his statement I'd wonder if your cysts are "unremarkable" when it comes to diagnosing your pain.
    Osteoarthritis & DDD.
  • SatchelSSatchel Posts: 37
    edited 04/28/2014 - 3:01 AM
    Thoracic spine pain, I really appreciate your comment and will at the least keep that in the back of my head. My bilateral L5 epidural was on Thursday and it has provided large releif. I am 80% back to the way I was 3 months ago, no sciatica, a functional baseline pain level. Even my tailbone pain is reduced! But whether that is thanks to the injection or just coincidence I cannot say (my tailbone didn't feel better until more than 2 days after I felt L5 relief sadly it isn't 100% better.)

    I'm slowly working my way back in to core exercises, and I'm trying some new stretches for the muscles that attach one's hips. I am considering joining a yoga class, but I first want to find an instructor who is familiar with spondylolisthesis.

    On my way out of the 'operating room' I could see a still-image from the fluoroscope and while I have seen plenty of my own X-rays and MRIs this image was just so large and detailed right on L5. Looking at it made me wonder how long I will be able to avoid surgery... Anyway, for now I will be happy and hope that this releif lasts, do what I can to make it last.

    I have a follow up appointment in 1.5 weeks but I want to know what you all make of something my docotor said. I like this new docotor and he takes the time to talk and answer questions, but one thing he mentioned on Thursday is that it doesn't really matter how well I train my core or sort my other muscles out, that since L5 has made a break for it my potential for pain won't appreciably be changed by stronger muscles. Have you all ever been told something similar?

    Another thing I've noticed is that L5 has been popping pretty often since the injections. For instance I will simply stand up and it goes. It doesn't feel good or bad but I'm wondering if it's anything you all have experienced or talked to your doctor about. I will likely call the nurse this week and ask her just to be safe. Obviously I understand that my L5 moves about more than it's supposed to, but why would injections make it start popping more than is the past?
    Grade I Spondylolisthesis L5-S1, bilateral pars issues
    Mild Scoliois double curve
    Arthritic activity in SI area and L5 through L3
    Chronic headache
    Nerve pain
    Gabapentin
    Opioids
    etc
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  • SatchelSSatchel Posts: 37
    edited 04/28/2014 - 2:48 AM
    EnglishGirl, I have always wondered if that crap hasn't been adding to my pain all this time. When I had the injections there was potential for me to have zero pain for a few minutes, from the anesthetic. But that was not the case. My L5 felt good, because I couldn't feel it at all ;) but still I felt pain nearby and below.

    I plan to question my surgeon about this when I see him next week, thank you for your post. The word "unremarkable" comes from a radiologist but no docotor has ever actually addressed that sentence in my MRI report. Not that I expect him to cut me open and drain the cysts next week but it sure is nice to know what is going on...
    Grade I Spondylolisthesis L5-S1, bilateral pars issues
    Mild Scoliois double curve
    Arthritic activity in SI area and L5 through L3
    Chronic headache
    Nerve pain
    Gabapentin
    Opioids
    etc
  • thoracic spine painthoracic spine pain Posts: 566
    edited 04/28/2014 - 3:00 AM
    Sorry guys had no idea that cysts were relieved by sitting down. Thanks for the information.
  • Well..now I'm going to confuse things! I had an appointment with a different spine specialist (not about the cysts) & he said, in his experience cysts (like mine) can hurt like hell sitting or standing & showed me why with mine! It's still true, most of the time, cyst pain is relieved by sitting...just not all the time! Why can't things be simple? ;-)
    Osteoarthritis & DDD.
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  • SatchelSSatchel Posts: 37
    edited 04/28/2014 - 12:15 PM
    Edit: I see what you are getting at now. Kind of frightening. But I display few of the associated symptoms. Perhaps I will still consider a blood test...

    At what age were you diagnosed?
    KarenFP said:
    Check HLAB27. Sounds simalar to mine. Started at 13 yeas I'm now 60.
    Grade I Spondylolisthesis L5-S1, bilateral pars issues
    Mild Scoliois double curve
    Arthritic activity in SI area and L5 through L3
    Chronic headache
    Nerve pain
    Gabapentin
    Opioids
    etc
  • Hey everyone, been some months since I posted... Past time to do some more venting I think :)

    Last time I posted I had met an orthopedic surgeon who I liked a lot, and he gave me L5 steroid injections. It worked really well but it didn't last even 2 months, dissapointing especially given the higher than expected cost (it was done at a surgery center and my insurance company didn't help with the many associated fees.)

    So my pain levels returned to the familiar and frustrating status quo and I'd had enough. I decided to join a weekly yoga class and then, a few weeks later, seek entrance to a pain management clinic. There is one very close to where I live, and the doctor (eventually) turned out to be nice and cool. At our first appointment, though, he seemed skeptical that I was to be a patient of his. But still he started me right away on gabapentin. 300mg x 3, I think it was. He added tramadol a month later and our relationship improved as he became less skeptical about my pain levels. My pain was certainly not gone at this point, but less! I didn't need nearly as much aleve to get by and I stopped on tylenol entirely :)

    So time passes and I'm up to 400mg x 3 on the gabapentin and taking 2-3 tramadol each day. I agreed to let the guy do an epidural steroid injection in his office, where he has fluoroscope and other equipment for such a procedure. He told me that in some cases the steroids can last a lot longer if you do them a few times... He also promised that it would be cheaper than the one I had with my surgeon and it was, very much so.

    My back felt pretty good but then, almost exactly 48 hours later, I was at work and suddenly struck with a terrible headache in my temples and huge nausea. I've never had headache issues in the past... this was so painful that I knew something was wrong. My pain doc was out of town for a few days, so the next afternoon I went to the emergency room. I was convinced that I was the victim of a spinal headache, since laying down on my back made things somewhat better. But after the doctors at the hospital talked amongst themselves, and called my pain doctor to get his take on the matter (he was very surprised that this had happened - I would be his first dural puncture, if that's what was causing my headache, and he has been an anesthesiologist for many years. no blowback on the fluoroscope or anything else abnormal, he said), they weren't convinced that I actually had a spinal headache, since I was able to sit "normally" in the waiting room and walk to my hospital bed and things like that. They said that spinal headaches are much more debilitating, and that the temples would be strange place to feel pain from one. But still they gave me the option of a blood patch. I took them up on it, and for whatever reason the anesthesiologist decided to patch me a level above the supposed site of the leak, at L4, and without a fluoroscope. Within seconds of the blood injection my headache badly intensified, some of the worst pain I've ever felt. I laid in my hospital bed for an hour or two before they put some Dilaudid in my IV, gave me a bottle of Fioricet, and sent me home.

    My pain doctor ended up being unhappy about the hospital's placement of my blood patch and even wondered aloud to me the next week if the anesthesiologist could have poked another(?) hole in my dura (I'm very skinny, and even for a skinny person my spine is very close my skin.) He gave me a Dilaudid prescription (pills) and some zofran, and offered to perform another blood patch though my tailbone using his fluoroscope, if I wanted. I very much didn't want that at first, but after 2 weeks without improvement, now approaching a month of missed work, I changed my mind. He did a "high volume" blood patch which was not pleasant, and unfortunately did not improve my headache.

    So I suffered. For 4 months I was largely unable to function, having to apply for disability at work. I saw many doctors in this time, neurologists mostly, and had a brain MRI ordered from one of them. Clean. Another ordered a low back MRI with contrast, maybe to find proof of a spinal fluid leak. No trace. I tried many different headache drugs: Topamax, amitriptyline, eletriptan, frovatriptan, diclofenac, and at least 2 or 3 others that don't come to mind. I tried going off tramadol for a few weeks, kept a headache log with diet and everything written down, tried CoQ10 supplements, vitamin B6, magnesium, anything I could get my hands on. Getting to ~2 months in, when I started to have some very slow improvement, I tried acupuncture, went back to my weekly yoga class when I could stand it, tried professional massage, physical therapy.... nothing helped. It was just time. And that's what many of these doctors said! "Just wait it out."

    Early on in this whole episode I noticed that I was clenching my teeth much more than usual, definitely explained by the nonstop headache. My posture and muscle tone declined as I spent a solid month just laying down as much as I possible could, trying to keep the spinal fluid in my head... but eventually I was able to spend more time upright. My actual pain level weren't improving a whole lot, but I could move around more now. Around the 3 month mark, in physical therapy, I discovered that neck stretches could alleviate the pain and nausea a bit. Maybe the spinal headache was gone? Did I ever even have a spinal headache? This seemed much more like a tension headache now, and where Fioricet wasn't helpful when the hospital first gave it to me, now it seemed to be working better against the headache. I am amused to note that the first neurologist I saw treated me as if I had migraines, the second diagnosed me with NDPH... my primary care doctor thought spinal headache. Every doctor I saw had a different thought. It was like playing roulette, plus all the different (ineffectual) headache drugs I tried.

    The conclusion of this story is that I strongly believe I had one or maybe two dural punctures, from the steroids and then maybe the anesthesiologist at the hospital. They must have been very tiny leaks, if they existed at all, based on how much pain one is supposed to be in during a spinal headache. Then the leak(s) healed naturally at some point, and left me with one enormous tension headache.

    We are 4.5 months out right now, and I'm back at work. Going back has been very difficult and I have to stretch my neck very often, wake up even earlier than normal to add neck and upper back stretches to my morning low back routine, yet still suffer through a lot of pain and nausea. The headache has never gone away since that day it started at work. Not even for an hour or two, sure it has had lots of ups and downs but.... it seems here to stay a while longer.

    I'm growing tolerant to my dilaudid and it concerns me. I wouldn't be at work right now without dilaudid, sad to say (though I guess it's pretty great from a pain management perspective because being able to go to work is a huge increase in function!) I'm up to 600mg x 3 for gabapentin and still take tramadol in the morning. I also have fioricet and zofran, but I hate that fioricet has caffeine and tylenol in it... bleh.

    In any case I left a message with my pain doc last night to tell him about my growing dilaudid tolerance. It seems that I have to take more than I'm 'supposed to' to get through, oh, let's say half of my work days. I really don't like it but I also couldn't stand to spend more time on disability.I also want to talk to him about muscle relaxants instead of fioricet...

    All this and I haven't even mentioned how hard it's been to adjust my posture to benefit the neck and upper back while not ignoring what's good for my low back! (difficult in part because I don't have much lumbar curve thanks to the spondylolisthesis...) When the headache isn't completely crushing my will, I still enjoy the old L5/L4 pain, tailbone pain, and neuralgia down my legs... in fact I think 600mg gabapentin tabs won't cut it much longer.

    Anyway I'll wait to hear back from him today and hope that a few of you manage to read through all of this :)
    Grade I Spondylolisthesis L5-S1, bilateral pars issues
    Mild Scoliois double curve
    Arthritic activity in SI area and L5 through L3
    Chronic headache
    Nerve pain
    Gabapentin
    Opioids
    etc
  • PlumbTuckeredOutPlumbTuckeredOut Philadelphia, PAPosts: 325
    I first injured my back when I was 8 years old diving into a shallow pool. We'll leave out the dysfunctional family bit and move ahead to when I was 18 and could seek my own medical help. I honestly had no idea what to say, do, or ask the doctors. We'll just say I was 18 in 1985 so the internet was not a option for reference or education. I was told over and over I was too young OR I was drug seeking when I complained of back pain.
    When I was 32 I lost bladder control but didn't know that this could happen as a result of a bad back. And I was very fortunately that a neurosurgeon at the Emergency Room that night operated that night. I had severe spinal stenosis, ruptured disks, needed a bone graft...... All I knew was that I felt better than I had since I was 8 years old.
    Ten years later and I needed more surgery but I was living in a very isolated place in the USA and had to take what I could get. The next time I moved to a big city and now there is a HUGE difference.

    I have a Pain Specialist and attend a pain clinic. I have access to my records (albeit not those old ones when I don't know what was done!) I have one doc who is "in charge" and sits with me once a week deciding with me what I need and what doesn't help. Right now I don't want more surgery because the last 2 didn't do miracles. I have PT, a therapist (but I hated him so I chose to go to another outside that practice.) We discuss the meds and the options. Sometimes I ask if I can go home and research. I'd worked in Pharmacy so that helps me a lot. Sometimes I'll go to the doc and make a suggestion- sometimes I get shot down and sometimes we try it out. (I hate the pain block/steroid injections but he seems to think they help.)
    Most helpful of all though is that I have a team of specialists asking me about pain and telling me what helps and what may not. Admittedly I went there terrified of the heavy duty meds but now I see their value. There's a great relationship between my team and me. I had tried several other docs before "falling" into this place and now I love it. They got me to quit smoking not by harassing me but by encouragement and support.
    I think so many of us are going around saying our diagnoses but forgetting we are people. Since my injury started when I was young I'm not sure there would be to list all of mine but as for treatment I'm still saying, have a trusting relationship with your main provider. I'd also suggest a pain journal. Write when you feel better and when you feel horrible and everywhere in between. Describe what you think helped or hurt. Remember to track emotional pain as well as physical pain.
    Become your own best medical advocate.
    Sheila

    Two roads diverged in a wood, and I took the one less traveled by...... (Robert Frost)
    I still don't know if I should have taken the one that said, "Caution! Dead End" (Me)
  • Thanks for your post Sheila. You made a good point near the end - we are all much more than a list of diagnoses and daily medications, but it's easier to focus on that part for a lot of people. Me included. That's what is tangible. Pain is so personal and emotional like you alluded to, it's tough from any angle.

    I agree with you as well about becoming your own advocate. There is not always a clear path feeling better, probably never a clear path for a lot of members of this site, but no one knows your body like you do. I can appreciate this in a sense during my weekly yoga class. The instructor is just wonderful, and she knows that I have problems and cannot perform 30-40% of the poses in her class, the easiest class the studio offers. She always helps me find an alternative pose and has helped me to learn a lot about my body. She is always sensitive to my limitations and doesn't hesitate to ignore the rest of her class for a moment to check on me. Did I have to build a rapport with her before I tried even a single class? Yes. Is it fun to tell someone how much pain you are in every day, and what your limitations are? No. But you have to embrace it I guess. And the reward for me is learning to relax and feeling, well, pretty great for 90 mins each week.

    Sheila it sounds like you haven't had it easy so it pleases me to hear that you don't sound completely downtrodden and bitter. You seem to have a crucial sense of self awareness and I think it says good things about you. I am kind of reminded of my girlfriend, but I won't go in to her story.

    Going back to my post from the 23rd, my doctor didn't care that I've had to take some extra dilaudid on bad days and told me to keep doing so. He said that extended release dilaudid might be right for me. He also mentioned muscle relaxants instead of fioricet... Anyway I have an appointment soon. He is weird about being liberal with pain meds and cautious about any other medication, but at the same time he constantly drug tests me. Kind of weird in my opinion. Anyway, we'll see. I get nervous about increasing the amount/strength of painkillers I take, but they help so damn much........
    Grade I Spondylolisthesis L5-S1, bilateral pars issues
    Mild Scoliois double curve
    Arthritic activity in SI area and L5 through L3
    Chronic headache
    Nerve pain
    Gabapentin
    Opioids
    etc
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