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.
greg.blog 
Encouraging! Thanks for sharing this Greg!
LikeLiked by 1 person
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!
LikeLiked by 1 person
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?
LikeLiked 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!
LikeLike
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.
LikeLike
Hi Greg,
Thank you so much for sharing your journey. I have anarachnoid web at T2 and am looking to get second opinions. Could you share how you chose Mayo and who your surgeon is? I also would love to hear how your recovery is going! Could you email me privately?
LikeLike
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!
LikeLiked by 1 person
Good Luck!
LikeLike
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
LikeLike
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.
LikeLike
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?
LikeLike
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.
LikeLike
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
LikeLike
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.
LikeLike
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
LikeLiked by 1 person
I’ve enjoyed reading your blog and about your recovery. I’ve had multiple issues the past year and have been seen at a spine clinic for multiple treatments to include lumbar epidural steroid injections, lumbar facet blocks and radio frequency lumbar nerve ablation. In spite of this, I’ve gone from running, hiking and being. Wry active to using a cane amid the a rollator walker.
A recent thoracic MRI slowed an arachnoid web at T5 and T6. I am now scheduled for surgery for a laminectomy and excision of the arachnoid web.
I’m looking forward to improvement and wish you continued success in your recovery
LikeLiked by 1 person
Ugh… so sorry you are going through this same journey Carla. Best of luck on the surgery. The recovery is rough and painful, but I can definitely see a lot of improvement over the past two years.
All the best.
LikeLike
Hi Carla, just read your post. My husband is getting surgery in 2 weeks. His web is at T6-T8. I think he is showing signs of weakness in his legs. Im concerned about how long after surgery will it be before he can go up & down stairs. Our bedroom & bath are upstairs, however we do have a potty chair downstairs he could use, but really no place downstairs to sleep. Im scared now that they will put him in a rehab facility. Would you like to share your recovery experience please. Thanks. Continued healing for you
LikeLike
Greg, thank you for this helpful information. My husband was diagnosed with AWS around T5 and T6 yesterday. He feels like a test subject as we are finding out that this is a rare condition. He has not decided if he will have the surgery, but your blog gives perspective. He is a letter carrier and is in constant unexplained pain. Now we have answers and a blog from someone who had the surgery. Thank you again. We wish you continued success and thanks for the updates.
LikeLike
Hey Chandra, sorry to hear about your husbands pain. I can completely relate and that must be so incredibly hard when it also impacts your job.
Two years after surgery and I have definitely not seen any further deterioration. Rehab is still an ongoing issue, but I’m still sticking with it and still experimenting. All the best!
LikeLike
Thank you for sharing Greg. My husband has AWS t6-t8. He is having surgery on Dec. 16th. He is in constant excrucuiating pain. Im praying his surgery is successful and he makes a complete & speedy recovery. It will definately be a challenge for his recovery as he is not one to sit still for long and wants to constantly be doing something. I myself cant see him going to therapy for 2 years. But , I’m glad you are doing well
LikeLiked by 1 person
Hope your husband’s surgery goes well Tina. I’m now 3 years in and still doing PT. It is a very slow road, but I am still seeing improvements. Unfortunately the pain has not completely gone away, but it did get better over the course of the first 18 months or so. And it definitely is not getting any worse. It is a big adjustment. My therapist has reminded me a lot that there is a lot of grief involved and I definitely feel that at times.
LikeLike
Im sorry your recovery is taking a long time. Hubbys surgeon never said anything to us about this, but we really didn’t know what to ask. All he said was he would be using a walker for a couple weeks. He feels that he will be in the hospital 3 -5 days, and will need some PT, I’m hoping its at home and not in a facility. My husband expects to be up and around by spring so he can do his yard work & stuff. Never thoughthe would need councilling also. Praying you continue to recover.
LikeLike
Thanks. Ya a lot depends on how bad the current damage is. I will say that going to a rehab center that focuses on spinal cord injury is a huge, huge help. Honestly, most of the spinal surgeons don’t really deal with full on rehab. I went to Craig Hospital in Denver which lots of people even travel to go to. They do a fell week of assessment and rehab and will actually ask all the right questions. I took a long time to accept that I have a disability, but I really do even if it is very non-obvious most of the time. All the best.
LikeLike
Hi thank you so much for sharing your journey. I have had three mris because my pain in my t5 has gotten so bad in a matter of 4 months. The mri suggests i had a arachoid web or cyst, it says flattening of the dorsal cord t5 also mentions displacement. I saw three neurosurgeons which they basically said that lil cyst isnt causing me pain which is absurd. Good news i saw my fourth one at barrow brain and spine which im so happy he took the time listened and actually did what a doc should do. I am gonna get a myelogram next week and than he said we will discuss the next steps. Surgery is scary but it has impacted my life to where i cant function its horrible.Im so happy i came across this page and thank you so much for telling your story. You are strong and i dont feel so alone , God bless you
LikeLike
Best of luck. I did regain some function and sensation after surgery so hope you have the same luck. Still working on rehab three years later, but I’ve gotten off most of the worst medications now (though I ended up replacing some with CBD and THC to help me sleep and recover).
LikeLike
I had a MYLOGRAM and MRI that shows the web at t3 t4. I go see my surgeon in a couple weeks and scared. Not knowing what he’ll say or do. I’m in so much pain and losing the feeling in my feet. My legs get so weak. I’m in Utah so I don’t know if they’ll even do a surgery here? Can I hear some of your symptoms please, before and after surgery. Thanks please take care
LikeLike
Ugh, so sorry you are going through this. Glad they found it though. The surgery wasn’t an easy recovery, but did go really well. The waiting before surgery is tough though. In my case, a fair bit of sensation improved over the course of 2 years after surgery. Generally I would feel more pain and then get more feeling back as the pain subsided.
I’d suggest finding yourself a great place to do spinal cord rehab also. Can help with walking, etc. I just did a followup at Craig Hospital in Denver. They are amazing and not too far from you.
LikeLike