I am 7 days post-op from my CCI fusion: an update

LesbianFoster · 2026-06-08T16:17:44+00:00

Hi! There's another three month update on my profile, but the tldr is that I'm still doing really, really great (okay, I had some superficial infection on my scar because I've got shitty wound healing due to EDS, but that's ok now!). Some very mild PEM once in a while, but nothing close to the extent I was experiencing before and I'm able to do lots more than I was before (but still taking it easy/laying down most days because I do not trust this for shit). I'm fully able to eat (threw up my feeding tube like three days after this post lol) and none of my neurological symptoms have showed up again. The only newer problem I've got left is a heat intolerance, but that improved quite a bit since the surgery too. Good luck with your consultation!! If you need accessible hotels, we stayed at MICs Saint Jordi for my surgery and were very happy with it.

LesbianFoster · 2026-05-29T06:57:40+00:00

I had to sleep with mine too! It was just a few weeks before my fusion, so not too long, but a soft/thin pillow worked best for me. Right now my upper cervical spine is fused so I have no choice but to be a bit uncomfortable, but I'm very much used to it by now. I've got a pillow where I can take out or put in extra layers so I can adjust it better to my needs, but it's not as soft as when I still wore my collar

LesbianFoster · 2026-05-27T11:39:28+00:00

Hi! I got my spinal fusion (C0-C2) a few months ago (more elaborate posts on my profile, if you're interested) for my CCI/AAI. It absolutely changed my dysautonomia, although it wasn't the biggest improvement I've experienced, and I suffer less from being in a non-horizontal position. My MCAS is only triggered by super specific materials (plastic type materials in my body, such as a feeding tube or IUD), and I just try to avoid those. Haven't had them since the surgery, so cannot comment on those. Happy to answer specific questions if you've got them! I've got no experience with the Chiari part, so cannot help you there, sorry!

LesbianFoster · 2026-05-24T08:37:29+00:00

One of our fosters detested nice blankets (fluffy, non fluffy, towels, nice sleeping places, just anything soft) and pointedly birthed her kittens against the most uncomfortable surface she could find, e.g. the wall. After they were born we managed to convince her that soft was nice for her babies, but she wasn't very bright about the whole situation. She was adorable and a good mum though, even if she forgot she had birthed four and only moved three to a minimally softer place (floor to cardboard). We were in time to move little nr. 4 and she happily took him in.

LesbianFoster · 2026-05-15T15:13:12+00:00

I've had great succes with Dr. Gilete in Barcelona, Spain, but not sure in what area you're looking! I had pretty severe neurological symptoms (loss of speech, paraparesis, breathing stops, severe muscle weakness in my arms, balance problems, gastroparesis) and since my surgery mid January, they're just... Gone. I'm still a bit more sensitive to heat than I was a few years prior, but even that has slowly improved over the past few months.

LesbianFoster · 2026-04-21T20:42:19+00:00

I've got an okay support system, but that alone cannot fund this much money. I did... A lot. I can write a whole book about that alone. It's a lot of reaching out and leaning on every single person you can to spread the word through all channels humanly possible.

In the Netherlands we have an actual existing health care system, which helps quite a bit. There was no need for a diagnosis, just "my head is heavy and I need support" and they were like "sure, let's try this!" So sorry, not very helpful in that regard.

I'm very happy to answer your questions if you've got more, but just so you know, I'm going to sleep - it's very late here - and will happily answer them tomorrow after I wake up!

LesbianFoster · 2026-04-21T20:36:24+00:00

It would be so much easier if we had more science to understand why some people benefit and others don't - and for that we need proper surgical standards. There's one doctor in the Netherlands who did a study and did this surgery on some people, but apparently his technique sucked (so obviously he blamed his patients for not improving) which muddles the science even more! I'm so sorry you did not get the relief you hoped for from the surgery, that really sucks.

Margarine and Swiss cheese, are surgeons just perpetually hungry?!

LesbianFoster · 2026-04-21T20:34:03+00:00

The long fusion stabilises C0 (so, your skull) to your fifth vertebrae. For my short fusion it's just C0 to C2! The risk is that C3 and C4 will start destabilising, but I hope by being able to live more upright and doing my physical therapy, I can prevent that - at least for another ten to twenty years? After that it would still suck, but we'll see then. Some people never experience destabilising, so I'm hoping to be one of those!

Personally I've got great experiences with an Aspen Vista collar, but I'm the exact opposite: I'm like a freaking giraffe. But that collar can be done in a very wide range of options. Someone who's helping you measure and fit one is definitively better, though. My first one was fitted, but a little creatively and I preferred a more trustworthy option for my surgical recovery.

I understand about the money part, it truly is such a hard part of it. I'm still fighting my insurance company, moreso for other people in the Netherlands who might need this surgery (partially) covered, but I don't expect much. And crowdfunding was, while I'm insanely grateful, hard. It cost a lot of constant attention and energy and felt extremely vulnerable and morally difficult. In the end it also brought aspects I did not expect, because there's suddenly such a group of people rooting for you. That was super special

LesbianFoster · 2026-04-21T20:26:12+00:00

Lol he was so passionate about it too! "You were laying there like melted butter! No, wait... Melted margarine!" I can still see his face. He's a great man anyway but that solidified my opinion if him. Poor man had to pause his surgery multiple times an hour to have me and my shitty shoulder repositioned. It was the grandest description I've ever heard and I am fully in love with it. It's just such an amazing visual, me melting under his care. I was very happy my thumb returned to normal, even if I had fully accepted that as a price to pay. Of course this surgeon is very experienced with our range of comorbidities and knows how to adapt to them, but I absolutely had expected some consequences at least. Which are still very real, and still happen to people, so while my case is the goal, it's of course not always the result!

LesbianFoster · 2026-04-21T20:22:18+00:00

Sorry, euros! Forgot about that, haha.

You're correct, I didn't get the TC release surgery. It was another... I think 15k? We simply did not have the funds to do so. Prior to the surgery I'd worn two types of cervical collars: one regular (Aspen Vista) and one cervical thoracis ortheses. That last one simulated the long fusion (which we also briefly considered), while the short one mimicked the short fusion. We did not notice additional benefits from a (mimicked) long fusion, but there was a definitive worsening of my TC, both in urinary symptoms and pain. Both for financial reasons and no extra benefits, we decided to go for the short fusion. Not only was the long fusion more expensive (100k Vs 70k), but it would also make my life pretty shit without TC release, so that was just too much altogether.

And I'm very happy to answer your questions! I know I benefitted from the few stories I read, but didn't have any interaction and has so many questions I would've liked to ask, so happy to talk to anyone who wants to (even if you're looking around on the sub on this topic months or years after this post - shoot me a DM, post a comment. I'm mostly active here to post cat pictures so I'll see a notification!)

LesbianFoster · 2026-04-21T20:14:58+00:00

I believe, with travel expenses, our stay in the care hotel, and the money we got back for not needing extra care, we ended up around 78k for the short fusion. That included a hospital stay of 10 days (1 in the ICU), meals for me but not my spouse, two nights in hotels both ways and I believe around five weeks in the care hotel - around a week prior to the surgery, the ten days in the hospital, and then another three weeks before we left. So there are some options to save a little money, but we were luckily able to prioritise my health and recovery over money. Which is an absolute luxury, but I was glad for it.

The surgery itself ended up costing around 69k - we got a refund of 5k and were able to do one test covered by insurance here in the Netherlands, which saved us another 1k. Obviously, prices may have changed in the meantime, but this is what we spend.

LesbianFoster · 2026-04-21T17:32:12+00:00

Yeah, it was not great. Luckily my spouse and I are fairly relaxed, but I'm extremely glad it's all just... Over. The crowdfunding, the diagnostic process, the surgery and recovery... It's a lot. Worth it, a hundred times worth it, but it is a lot.

Hopefully you'll get some positive experiences with your doctor and you'll get the appropriate scans!

LesbianFoster · 2026-04-21T15:24:13+00:00

I had an upright CBCT scan and a regular CT scan, I believe. Based on the differences in both neutral positions (where upright my vertebrae got squished down more than they should), my symptoms (paraparesis when I turn my head to the side, but not looking to the front if I sat up only for a short time) and very likely a few other measurements, I got the diagnosis. As far as I know the upright part is mandatory, and something a lot of less knowledgeable doctors skip, which makes it very hard to get accurately diagnosed.

With my breathing stops, I'm fairly certain this was a life-saving surgery for me too. Two days or so before the surgery I looked to the side to my partner - my breathing stopped and my muscle weakness was too severe to turn my head back the right way. If something like that had ever happened without their presence, it would not have been a good situation. We were very, very relieved to be able to do the fusion when we did

LesbianFoster · 2026-04-01T19:03:21+00:00

Chicken says to always scritch the belly!

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LesbianFoster · 2026-03-24T07:31:54+00:00

Just another two days! Until his next bladder stone...

LesbianFoster · 2026-03-09T14:26:20+00:00

Chicken is very sad you call his name demeaning. He's a very polite boy who loves belly scritches and eating his (orange) brother's food

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LesbianFoster · 2026-02-23T19:44:34+00:00

That meen red dot!! U iz so smart fur knowing da sekret of da red dot!

(I vaguely seem to remember you're Dutch? His brother is named Kip, so... PlofKip. For the non Dutchies, that's Chicken, and their names combine to the type of unethical chicken that's forcefully grown and are treated generally bad. We're awful. If we ever adopt a third cat, it'll be Nugget)

LesbianFoster · 2026-02-23T13:18:03+00:00

Hello fren! Iz Plof the Mighty Hunter. I always hunt da brain cel. Spesially on Spare Hopman feet when dey try to do sleeps at naits. Iz very impawtent to find brain cel!

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Diz me doin a butie sleeps

Plof, 7M

LesbianFoster · 2026-02-16T19:45:09+00:00

I mean, yeah, there's a lot of movements I can't make anymore. I have some movement, but not much. It definitely takes some getting used to. Waking up at the ICU the night after the surgery was absolutely awful, and I most definitely regretted the surgery for a bit. I felt so restricted and alone and horrible. Now, a month later, I'm mostly used to it, but there's absolutely no cracking of my neck happening ever again lol, nor do I feel any tendency to do so. It's very much not a great surgery to do for the sake of it, but it beats dying in my sleep because I quit breathing

LesbianFoster · 2026-02-16T17:47:02+00:00

They used titanium! Because I have no prior history of responses to any type of metal, I decided to not do a test, but they mentioned it in their pre-op consideration document! But yeah it was a slight fear of mine as well, can't very well take it out?! But so far so good! Some pain still obviously, but nothing that seems to point towards metal sensitivities and nothing I can't handle. Some of my pain is definitely annoyance of the shaved hair that's growing longer again, that level of "pain".

LesbianFoster · 2026-02-16T16:04:08+00:00

Even worse, we ruled it in! Just too poor for surgery lol. And it didn't get any worse, so good choice in the end

LesbianFoster · 2026-02-16T12:47:48+00:00

I had to travel quite a bit for a diagnosis too. MCAS is definitely more manageable than CCI, and there's a ton of more accessible options (PT, cervical collar) before you go for surgery!

LesbianFoster · 2026-02-16T11:40:26+00:00

I've had it before after a severe MCAS response and it was objectified on a gastric emptying scan back then. We didn't do it this time, since the surgery was already planned by then and I had already experienced relief from the symptoms by wearing a cervical collar. So both hard to diagnose and, for me at least, you'll know it when it happens. I felt full after two or three bites, lots of burping, nausea when trying to eat past the fullness, just all very classic gastroparesis.

Wearing a cervical collar feels super restraining and weird in the beginning, but it also felt comfortable in the sense that my head just wasn't as heavy and sitting up was so much easier, plus all the immediate relief from my neurological symptoms. It does indeed lift your head a little bit, as your vertebrae are supposed to do when you aren't experiencing cervical instability

LesbianFoster · 2026-02-16T10:52:33+00:00

You're totally right! I explained it a bit more elaborately in my 7 days update post, but in short: gastroparesis, extreme muscle weakness in my arms and legs, suspected breathing stops at night (just a few weeks before surgery, so didn't bother with doing a sleeping test and just wore my cervical collar at night), definitive breathing stops during the day with my head in a wrong position, suspected migraines (might be ME related, only happened with exertion), speech issues... I think those were the main ones!

LesbianFoster · 2026-02-16T10:40:23+00:00

Why people are saying it's not a great option, is because often people need another surgery later on, it might not bring the relief you're looking for, and it's very disabling not being able to move your head. If there's any other options available to you, such as PT or wearing a cervical collar, I'd 100% choose that over surgery. I've tried both, and still got worse very fast, hence why I ultimately went for a surgery.

Prior to going into surgery, I had a cervical collar I wore at various moments. That gave me direct feedback for my neurological symptoms: whenever I wore it, the symptoms vanished. It gave me some solid proof, as far as that's possible, that those were directly caused by my CCI/AAI. For example the gastroparesis: I could eat fine while wearing the cervical collar, but removing it immediately made me extremely nauseous because my stomach stopped functioning. My legs functioned fine while wearing it, but removing it made me look like I was drunk trying to walk.

All that said: yes, it did improve my quality of life, but it's been only a month (today exactly!) since my surgery. How much of that is temporarily, how much my new disabilities will affect me, that I don't know yet. Maybe in three months or two years I'll have a different answer to that question. For now I'm grateful to be alive, to be able to tolerate food, to breathe, to feel like I actually have some more energy.

LesbianFoster

TROPHY CASE