Laminectomy for an Arachnoid Web. My Experience and Recovery

It is now about seven weeks since I had surgery to remove my arachnoid web. I thought I would write some thoughts on how recovery has gone since surgery.

I think my big takeaway is that spinal surgery is really damn painful. A lot more painful than I expected. I had brain surgery to remove a tumor when I was about 25 and that hurt a lot less and the recovery was a lot shorter. It is really hard to not use your back.

The surgery itself was pretty fast. Just a few hours asleep and then waking up groggy. The first thing that actually was bothering me was that my head was itching in a few spots and kinda bloody. Turns out they put my head in a clamp and tighten it in place with some screws during surgery. I ended up in the hospital for three days. A bit longer than expected because I got a pretty bad spinal headache due to losing spinal fluid during the surgery.

After the hospital I was in a hotel in Rochester, MN for a week. The pain for my back got pretty bad even though I was taking a fair bit of oxycodone. Pain as high as an 8 (on a 1-10 scale) which is apparently the point at which I screech uncontrollably. Fortunately it really only got that bad when I was moving to stand up. I flew home from Mayo (first class but was still not at all comfortable) about a week after surgery. Couldn’t walk much so I was in a wheelchair through the airports, and a friend gave me a ride from the airport while Mekayla picked up our car and came home separately with Connor (Morgan had returned earlier and was having a great time staying with friends).

Most of the six weeks after surgery was just laying around and watching way too much TV. Mostly couldn’t even stand to watch anything that I hadn’t seen before so it was really a lot less fun than that sounds. At first I just had too much oxycodone in my system. Then I had a week-long spinal headache that was probably my body adjusting to the new dynamics of how spinal fluid flowed in my body without an arachnoid web getting in the way. After about four weeks I had tapered off of the oxycodone and then had another weeklong headache, that peaked at a non-stop 7 in pain, caused by oxycodone withdrawal and autonomic dysreflexia. That headache was really debilitating.

Throughout the first six weeks of recovery I wasn’t supposed to lift more than 10 pounds, so I couldn’t do any physical therapy other than just walking. When I got out of the hospital I could only walk about 100 feet. It was a few weeks before I could walk for more than a few minutes. Currently I’m up to 12 minutes. Irritatingly slow progress, but steadily improving.

Still taking a lot of Tylenol every day to get through the pain, but I have now started PT exercises and have gone for a walk for 10 days in a row. My muscles feel very weak, painful, and sore all the time, but it it is a start at least. I’m expecting a good year or two of rehab to go. Hopefully my body will start to get used to it. I think all the spinal cord nerve problems I was already having – weak leg muscles, bad balance, muscle atrophy, and using muscles incorrectly – are now just resulting in everything complaining as my spinal cord relearns how to transmit signals to my brain. Unfortunately most of the signals are just pain so far.

But pain is kinda one of the exciting signs. For the past year or so my legs have been really numb and getting more numb. I couldn’t really feel much if any pain in my left leg. The other day though, I dropped a small measuring cup on my foot and actually said “ouch”. I am pretty sure I have been having some sensation returning to my legs that was not there before. Not sure if it will keep improving or if it is all entirely real, but for the moment I’m trying to take pain as a good sign.

14 thoughts on “Laminectomy for an Arachnoid Web. My Experience and Recovery

  1. Thank you for sharing, Greg! Your positive attitude is inspiring! I really hope the feelings in your legs continue to return but the pain diminishes of course. Thinking of you!

    Liked by 1 person

  2. It is good to finally learn of another with this diagnosis. I have been looking for a surgeon myself who has done the rare surgery and wondered if you might share the name of your surgeon at Mayo and let me know how you liked them. Also, I would love an update on your recovery.

    Can you email me privately?

    Liked by 1 person

    • Hello Greg. I find on your blog, that you have a surgery by removing archanoid web. How are you doing? May I ask you, what name of doctor, who did surgery for you at Mayo? Thank you a lot!

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      • Hi Alex, the surgery was performed by Dr Marcus Gates who was in his last year of residency with Dr Krause.

        Recovery has been slow but it is continuing to improve. Still expecting another few years of rehab, but things are definitely not getting any worse and are slowly improving.

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  3. Thank you very much Greg for prompt information! I will definitely connect to Dr. Krause. Your experience inspired me to move forward. You helped a lot!
    Good luck with your recovery!

    Liked by 1 person

    • Can I ask what your first signs was ? I have recently had an MRI scan for my psoriatic Arthritis and they have found Arachnoid web on my spine and from all I can see on the internet there does not seem to be much about it . I’m in the uk and awaiting referral to a neurologist but been advised if I have any numbness or loss of Bowel or urine to go straight to hospital.
      Would be grateful for any information you have on this condition!
      Thanks In advance

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      • Mine first sign was in my early 20s (about 20 years ago) with subtle increases in constipation that got progressively worse. Also a fair bit of tripping and muscle weakness in my ankles. A lot may depend on where your spinal cord is being compressed though.

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  4. Hi!!! I am from Argentina. Sorry por my english. I cryed all over your posts. I had most of your symptoms for several Years, slowly progressive. Finally a neurologist told me that the little arachnoid web I have from t3 to t4 may explain some of my symptoms.
    I have fasciculations, which they told me cannot ve explained by the web…did you suffer muscle fasciculations? Weakness to eyaculate? Low muscle atrophy? You are a verte strong person. How Is your body now?

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    • Yep, all of that. Lots of very slowly progressing problems. I’m about a year since surgery now and am slowly improving. It is definitely taking years of hard work and constant effort. Effectively it is like having a second job where I work on my body every day and try to not over do it.

      All the best.

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  5. Thank you very much for your answer. I have one last inquiry. If your web was between t5 an t7 why did you hace symptoms in sholders and arms? For the spine compression to affect those parts of the body, the compression should be from t1 and up (c8, c7,/etc). Did neurologist explained that? Did you have fasciculations in your arms and hand, stifness, tiredness? Thank you very much

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    • The compression was slowly moving upward and there were definitely symptoms as high as t1 in various sensation tests. My hands had only just started having minor tingling when I had surgery and then they went away.

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  6. i find your blog very interesting. i too have the web but nobody will do the operation in the uk and they try to dismiss the symptoms as anxiety etc my symptoms have been progressing and had not realised for 15 years as you can ignore to a certain point. at least i know now somebody had the same symptoms and its not my imagination. take care

    Liked by 1 person

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