Chiari Online Support Group

Cord de-tethering experiences?


#1

Mt specialist has determined that my Chiari is caused by a tethered spinal cord. It doesn’t show up clearly on an MRI, but my uroDynamics testing in relation to my incontinence issues are exactly what they would be if there were a tethered cord, my spinal cord seems to extend 2 vertebrae too low, and it’s not the part of my brain coming out of my skull that you would normally expect. You’d expect the cerebellar tonsils to protrude w normal Chiari, but it’s actually my brain stem. In other words: I trust her diagnosis.

When I’m not liking, however, is every time we talk about it, it seems to be a more and more major thing. It’s possible that she did mention all of these things at the beginning but… At first I remember being told it was extremely minor, they’re just going to cut the filament. Then I find out that they’re also shaving 2 vertebrae down, and I will be in the hospital for a few days afterwards. And I find out that I’m not just going to be in the hospital, I’m probably going to be in ICU and not going to be allowed to be off flat on my back for the first 24-48 hours and will be catheterized and I don’t even know how they’re going to deal with number 2, oh yeah and I won’t be allowed to lift anything over 5 pounds for at least 6 weeks, oh yeah and we’re going to send you to physical therapy 3 times a week because your legs might be wobbly you and might have to generally relearn some basic motor skills for a bit. WTF!!!

To add on to this, I have never stayed in the hospital before, I have no idea how it all works, and I have weird food and medication allergies that many doctors have not taken seriously despite the fact that they can go anaphylactic! I am deathly allergic to salicylates, aka aspirin and NSAID, and have nearly gone anaphylactic on exposure to Yellow 5, yellow 6, Menthol especially!, and thyme, which are also salicylates. I have had to stop an ER nurse multiple times from putting NSAID in my IV because they don’t read my fucking chart. Have had multiple doctors swear a medication prescribed is not an NSAID, then I get to the pharmacy in the pharmacist confirms that this is an NSAID and I will be allergic, but then the doctor refuses to prescribe anything else, not even a steroidal anitinflammatory. The only other surgery I’ve ever had, a truly minor laparoscopic outpatient procedure, was still extremely not fun in recovery after because no one really thought about what happens when someone is allergic to anti-inflammatories and muscle cramp relief agents: a shit ton of swelling and pain normally people don’t even experience because they give them lots of ibuprofen while they’re still under. Artificial sweeteners give me horrendous migraines, severe diarrhea, or both; soy protein gives me instant severe migraines. What the hell are they going to feed me? Do you have any idea how much of everything that stuff is in? They also frequently tell patients to go off their antidepressant medications first. I get severe migraines whenever I miss a dose, and I’ve also got mental health issues that are hospital-related. I have been suicidal from sheer pain before, but luckily not physically capable of acting on it. I do not want to suddenly be off my anitdepressant, in a shitload of pain, and in the hospital which terrifies me in a way that I can’t
“just calm down and get over.” At the same time, I don’t want to say that that way, and find myself strapped to a bed and not allowed to move because I’m considered a suicide risk, which wouldn’t surprise me given the state of of mental health care in most Hospitals and institutions, unfortunately.

As you can tell, I’m really starting to freak out. I have an appointment next week preoperative blood work, go over all the medications, and where I guess I can ask some questions. What do I need to ask?

And more important, can you give me some sort of idea what your recovery path was like? How long should I really expect to be out of work, especially given that I have a 45 minute drive to my work and not driving myself (bus, having family drop off, Uber) is simply not an option? Did you really have to relearn how to walk properly? Etc?


#2

Get Second and Third Opinions. Do not rely on just one opinion. I have been to the best doctors in the world for my son and some recommend surgery and some do not. The point is not all doctors can know everything about your condition.


#3

I guess it depends on what kind of surgery you’re having. If you’re doing decompression surgery, I’d do everything I could to find someone who could be there for it and advocate for you after the surgery. Family member or a couple different friends in shifts, at least until you are out of the icu. I had decompression with a dura patch and I was pretty out of it for 2 days with minimal ability to direct any hospital staff. I’ll be praying for peace for you. Hang in there and try not to let stress take over. You can make it through!


#4

Thank you for the well wishes, but I am not having decompression. I am having my cord de-tethered. I can find extremely little about adult recovery expectations and that which I find is very vague.
Please only comment in this thread going forward if you’ve been through or had a loved one go through this specific surgery.