6 months post op... Help

Hi guys, I didn’t know where else to go… I should say I was decompressed oct 14th ish geeeze I don’t even remember the date… Anyway it was a rough 2 weeks but after that heeling went pretty good. Haven’t had a pressure headache since and what a Great feeling that has been after 3 years of suffering.
The day I was released from the hospital I had in my right leg… The nurses and docs said its prolly sore from being in bed for 5 days… A week later after I got home it started burning so I called my reg doc and he ordered an ultrasound to make sure it wasn’t a blood clot. It came back as no.
He said try physical therapy for my back while I was going for my neck anyway, I did that for 8 weeks with no relief … Therapist said it wasn’t working so probably not sciatica or I’d be a little better. So I went to ortho doc I had an MRI and they said it showed no blocking of sciatic nerve and no slipped disk. But it looked like There was a small tear on something but it was minor. And he recommended a steroid epidural… Which freeks me out because of the chiari surgery.
I opted for a 2 nd opinion and he said the same thing although he said the tear is insignificant and it’s not causing my problem.
I’ve been in bed since Saturday standing and walking is excruciating. I went back to ortho for a desperate plebe for help without doing an epidural so we are going to try nureotin
But as we know dr’s don’t actually care, I asked for another MRI , and he said it was pointless . Has anyone had issues with muscles or nerves after surgery? I can’t help thinking it has to be connected . By the way my chiari was right sided and I had less feeling on my right side for 3 years( maybe nerve damage from not being fixed quick enough) I mentioned this to ortho doc and he all but laughed like I was an idiot. I don’t know I’m desperate for relief … And Percocet isn’t touching the pain.
Thanks for listening

I second what Em says. Also get a copy of the lumbar MRI report- as we all know docs sometimes leave out pertinent information.

How are you doing?

Crappy … Thanks for asking though … Still having massive pain … The neurontin seems to have calmed down some of the burning pain. But it’s still very painful to walk . I can walk into my job. Sit at my desk and walk to my car. But walking around my store for breaks and lunch is pretty bad. I end up sitting all day, I bought a memory foam pillow to sit on to help , but popping oxycodone about every 5 hours to make it thru till I get home. I have an appt for neuro on Thursday in NY finally. So we will see how that goes. And my reg doc ordered an EMG for me. Cause I pleaded for something else, after I ended up in the ER dying in pain. But the EMG isn’t until next week.
I do have all the reports and MRI’s ( of course you know after being mis- diagnosed for so long you learn the hard way to make sure you get the written report … Since that’s what happened to me from my neurologist , he didn’t tell me I had chiari from the report because he didn’t think it was relevant)
Anyway I’m ranting… Lol
So right now I’m still in a never ending holding pattern.
I’ve just read everywhere that permanent nerve damage is possible … If anyone actually had that and if its treatable so you can function… Idk if that’s what I have going on … But it seems every D bag I get sent to never has an answer.

On a total side note… I have to laugh cause my husband like never goes to the doctor… He’s had this pain in his shoulder for like 5 years… Wines about it every so often but has never made an appt to get it checked. I finally made him go … And the day he goes, he gets an X-ray that day in office, gets a steroid injection that day in office, and offered narcotics if he needed it for pain… And I’m like WTH … Is it because your a guy you get fixed immediately ? I’m sitting here waiting 3 weeks for an EMG …and I can barely walk…
Ok end rant…!

Keep us posted on the EMG! I hate that you are having so much pain. How annoying about your husband's appt compared to yours! It does sometimes seem that men get taken a little more seriously. :(


I had the very same thing happen to me. Make sure they check for sacroiliac (SI) dysfunction. That was my problem. I couldn’t walk at all, my leg would “lock up” and hurt worse then anything. I went to a “manual therapist” and finally get it back back in place, but it kept happening again. This was before I was dx with EDS. I finally went to a sports medicine doctor and underwent prolotherapy. It was a life saver! I have to go back every few years to have it redone, but it wasn’t too painful, and worked amazing!

Hang in there Jennifer!