Super Headache, Round 2

About 5 weeks after my surgery, I went through three or four days of a really bad headache.  I called it a migraine. It went away.  For a while.  Now, it is back every time I stand and there is some concern I have a dural leak (CSF leak).

ache-1297598_1280In consulting my internet doctor, Dr. Google, a common description of the dural headache is “the worst headache of my life” and that is a pretty good description.  After a while of standing, the headache builds to the point of nausea and basically I am debilitated.

Right now, I am waiting on an MRI, so I don’t know for sure I have the dural headache, but my symptoms indicate that I have a slow leak.  The pain builds and is worse when standing or sitting.  Ringing ears, dizzy and nausea accompany the pain.  Sometimes it takes 5-10 minutes for the pain to start, other times it takes a few hours.

This fits into the less than 1% complication.  It reared up as I started to do more and removed the brace.  If I do have a CSF Leak, then there may have been a weak spot from the prior damage and surgery that started to leak.  If I do have a CSF Leak, I hope to get it fixed soon. I do have a really bad headache when I get up.

  8 comments for “Super Headache, Round 2

  1. Jason
    September 7, 2019 at 7:48 pm

    Hello there Steve,

    Some of what you have gone through hits awfully close to home for me. Thankfully NOT the CSF leak.

    I too had an L4-L5 laminectomy surgery. Mine was 7 months ago. Although it was nearly a 6-year journey to get there. Too many doctors that would rather prescribe pain meds instead of finding where the problem is. 4 years, and too many doctors to count, later we found a primary physician who took my symptoms seriously. Who referred me to a Neurosurgeon who did too. After getting all the necessary MRI’s, X-Rays, & CT’s. They showed that I had a small bulge coming out on the left side and it was pressing on my sciatic nerve. Then came the trips to physical therapy sessions that felt more like torture. Blocks that didn’t change anything. After all that she deemed surgery was needed. On the day before surgery we got the call saying that the insurance decided the surgery was unnecessary. I was devistated. After a year fighting the insurance company over this my work suddenly changed insurance carriers. The new insurance approved it immediately!

    Unfortunately, what was a small bulge had turned into a shredded disc and 5 hours in surgery. My wife was going crazy. We were told a simple 2 to 3 hour surgery and now this. I ended up with 4 screws, 2 rods, and a buttload of unexpected problems. The first 2 weeks wasn’t bad. The problems started in week 3. I spent 5 years praying to get feeling back in my leg and now all I had was constant hellish pain in it. A friend joked that I should have been more specific, because I was sure “feeling” it now. My wife would have to get up every morning and help dress me like I was a toddler. Then get the kids ready for school, drop them off, and then make it to work herself. Talk about a blow to your manly ego. Here I was 43 years old and feeling completely helpless. That’s one that stings.

    I was referred to a specialist to start a series of blocks. Hoping that this would give some relief. Before I could get to the first appointment my employer terminated me. A butt move to be sure, but I live in an at-will state. Now since I was the one with the job carrying the family’s insurance. We were in a serious bind. Now we are scrambling to find new insurance. While putting my 1st block on hold.
    So, after getting that sorted out, I ended up getting my 1st block about a month and a half later than originally scheduled. It worked out better than I expected. Until between 2 and 3 weeks later. The pain started coming back. This time starting in my back and travelling down both legs. They performed a 2nd block. I was honestly expecting results like I got the first time. I got nothing. Absolutely nothing. I couldn’t be sure on the way home what it was. I was still feeling the anesthesia and couldn’t be sure if what I was feeling was from the procedure or not. When I woke up early the next morning in the same pain as before the procedure I knew. I called, but was told it could take up to 10 days and to call back then. The pain has gotten progressively worse. Yes, I called. They want to try 1 more before sending back to my neurosurgeon. I now have to shuffle when I walk so I don’t fall down, again. I’ve had close calls where my wife and also one of the kids have to catch me. I don’t know how much more my pride can take. The pain that flows down my legs has become worse. It has taken to travelling up my spine. I walk with a cane while hunched over like a little old man now. I will have my 3rd block in 3 days. I hope it does something. Please.

    I am lucky to have a very loving wife. She has stood by me for 15 years. We have 2 awesome school aged children. Who have had to watch their father go through all of this. It’s hard to not feel like I have let them down for not being there like I should be. Instead of being there for their field trips, awards ceremonies, school plays, or just taking them to the park I am stuck at home. A trip to the grocery store is more than I can handle anymore. I am almost constantly, on either ice packs, heating pads, or pain killers. Not how I envisioned things when I held my oldest in my arms for the first time. Reading what you wrote gives me some hope and I thank you for that. I’ll find out in three days if I get what I have hoped for. Thanks for reading my story. Sorry it was too long.

    Jason

    • Jason
      September 7, 2019 at 8:27 pm

      I forgot to note that my simple laminectomy turned into a spinal fusion.

    • September 8, 2019 at 5:31 pm

      Thank you for sharing your story. I’m sorry it is so epic. You are due for some good karma. Things can get better. Still a bad day here and there, but I’m surfing, fishing offshore, riding my bike and doing stuff with the kids all the time now. I’m older, slower and more cautious, but I’m doing things.

      Good luck!

  2. Bill
    June 10, 2019 at 12:05 pm

    Hello Steve,
    Thanks for detailing your process and recovery with discectomies. I hope you are doing well these days!

    I just had a recent microdiscectomy L4/L5. I then had the dreaded spinal fluid leak as you did that was discovered 8 weeks later. I didn’t have the headaches though, but had very bad back pain from a large bump that formed on my back and ran all the way to the spinal cord leak (and I guess the nerves around that area).

    They did a second surgery to repair the dural tear. I am now 4 months past the second surgery. I was starting to feel pretty good and got back on my bike last week. Just a 45 minute ride set me back a couple weeks at least. It is so frustrating! I still have pain in my back, numbness in my foot and I can’t sit for long at all.

    My question for you is how long did it take before your back pain went away and you were able to sit for any length of time? Are you riding a more upright bike now?

    My wife thinks my back problems come from all my bike riding and spending so much time bent over, and she may be right. I don’t ever want to go through this again so I’m going to be cautious with the bike riding. Do you think your bike riding had anything to do with your back issues? Thanks.
    Bill

    • June 10, 2019 at 6:35 pm

      Bill – let’s say that this was three years ago for me. In general, I’m doing well. I don’t have 100% strength in my right leg, but most of the numbness is better (or it doesn’t bother me). I can sit better (always use better posture now). In general, I’m back to a normal life.

      It is funny what you say about the bike. Do we have the same wife? I do get occasional pain when I ramp up the workouts. I am convinced the pain is from muscle imbalance. I’ve been working on that lately, and… less pain. I try to limit my rides to less than 3 hours. I’m slower now, so 40 miles takes closer to 3 hours. I did go with a slightly higher angled stem and put a semi-compact crankset on my climbing bike. I look in reflections when I can, and my bike posture is pretty good.

      How long? At one year, I was pretty functional.
      At two years, normal, but out of shape. Hard exercise, or new things would put me in a world of hurt. Recovery time is better.
      At three years, I’m doing stupid things again. A few weekends ago, I rode three days in a row, ice skated one day and took my older kid to a rock climbing gym. Monday and Tuesday were miserable. By Thursday I was fine. Woke up a lot of muscles.

      I really think that you need to slowly build up strength and stamina on lots of core muscles and back muscles. Getting balance is hard, but it seems to be super important too.

  3. Ellen
    April 21, 2017 at 12:58 pm

    Steve, I hope you will follow up with this blog. I hope your headache is gone. Headaches are the worst. I had a headache several days after my laminectomy, waking me in the night, but now I am 17 days post op, and it’s gone. I have back pain to the left of my incision, but my pre-op spinal stenosis pain is gone.

    • April 21, 2017 at 3:01 pm

      Incision pain is normal. That will take some time to go away. If you have relief, that is great as there will be swelling from the incision that will cause some pain.

      I’m feeling good. Good enough I haven’t updated this site in too long.

  4. Dave
    January 7, 2017 at 3:55 pm

    How are you doing, Steve? Hope you’re doing better.

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