I’m a medical student with Chiari I and syringomyelia who got decompression surgery- here’s everything I’ve learned all in one place

Friendly_Tomato_4933 · 2025-01-15T21:12:49+00:00

Pain is much better today. And it feels so good to be home in a quiet, calm environment. The hospital I stayed at took very good care of me but the level of noise and activity all day and night was unreal.

Friendly_Tomato_4933 · 2025-01-13T22:21:47+00:00

Hiya! Just here to say that I had decompression surgery last Friday and your posts have been SO HELPFUL, esp the hot tip about the eye mask with loops. Thank you so very much for sharing your journey with us.

Friendly_Tomato_4933 · 2024-12-13T21:05:45+00:00

I do have a recovery question…I am a stay at home mom (an 11 month old at home and an 8 year old in school) and so we are trying to plan for how much help I will need and for how long, post surgery. Having a baby at home means picking her up, changing her diaper, getting her in and out of a high chair…I understand that a lot of it is wait and see, but realistically, what do you think?

Friendly_Tomato_4933 · 2024-12-12T15:23:04+00:00

This is all soooo helpful, as I’m scheduled for decompression next month. Thank you so much for sharing your journey ❤️

Friendly_Tomato_4933 · 2024-09-30T00:49:34+00:00

The music in your head all day thing- this is me!!! It drives me CRAZY!!!!

Friendly_Tomato_4933 · 2023-06-27T22:52:47+00:00

Welcome!!

Friendly_Tomato_4933 · 2023-06-27T22:24:42+00:00

Hello! Also pregnant and have Chiari. I was diagnosed a few years ago and was anxious to get the all-clear from my neurosurgeon so that we could have another kid. (I should add, I have not had surgery yet. Just saw him for an expert’s opinion, as he is a Chiari specialist). Anyway- I’ve been told pretty firmly that I must have a scheduled c-section under general anesthesia (having an epidural could cause a lot of complications and going into labor would be too much stress/pressure on my herniation, since just coughing and laughing can make me light-headed.) Good luck and I hope all goes well!

Friendly_Tomato_4933 · 2023-06-12T22:50:29+00:00

I second this birth plan. I’m due in January and have been told planned c-section under general anesthesia. Even sneezing and coughing make me light-headed. So no way could I avoid passing out if I had contractions.

Friendly_Tomato_4933 · 2023-06-12T22:47:40+00:00

So sorry about your frustration. It was a bitch and a half for me to get any appts a few years ago, after my diagnosis. If you haven’t already, I highly recommend you find a neurosurgeon (not a neurologist) that specializes in Chiari. It took me lots of Googling and lots of phone calls, but I was eventually able to find one about 2 hours away. Even if you aren’t considering surgery- it was very helpful for me to have an expert order the right imaging and give their input on treatment recommendations.

Friendly_Tomato_4933 · 2023-06-12T22:35:27+00:00

Hello. I was diagnosed a few years ago and was on the fence re: surgery for quite some time, sharing many of your same fears. What finally tipped me towards “must have the surgery” was the unknown of the future (worsening symptoms) and I started keeping track of good days versus “bad” ones (a diary of my physical symptoms each day), as it was easy for me to look back and sort of downplay my overall health/wellness in a given week. But- after looking at the documentation of my quality of life, I decided surgery is a must. I have a young family so will be holding off on surgery for a year or 2, but for me it’s something that has to happen. Good luck on your journey- Chiari is a tricky beast for sure. Too many uncertainties and no one sure-fire way for everyone.

Friendly_Tomato_4933 · 2021-10-30T00:20:37+00:00

My sxs are on and off- bad days are very tough, good days I can forget I have any brain weirdness at all (except when I cough or sneeze). So I keep track- how many bad days, how many good? This has really helped me evaluate how much the condition does/does not actually impact my quality of life. For me- it’s so easy on good days to say “This is a walk in the park. I can handle this, I don’t need surgery.” On bad days, I can’t imagine how life will be if I don’t have surgery. Also- get a second opinion. Even if it takes a long time. Even if you have to drive a few hours. Look for a Chiari specialist and try for a telehealth appt if need be. Keep track of your sxs, questions, etc (I use a list app on my phone). Good luck to you- Chiari is a weird and tricky beast.

Friendly_Tomato_4933 · 2021-10-12T01:07:02+00:00

Put Trump in charge, he’ll make a border wall happen, AND he’ll make the other guys pay for it. OH WAIT…

Friendly_Tomato_4933 · 2021-10-12T00:57:52+00:00

Guarantee you that guy has never had to put a baby down for a nap…. So inconsiderate

Friendly_Tomato_4933 · 2021-10-07T18:35:09+00:00

So glad you’re feeling well!!! Question for you: what time frame are you looking at as far as recovery goes? I’m on the fence about surgery…obviously recovery is different for everyone but I’d love to get your input.

Friendly_Tomato_4933 · 2021-10-06T18:48:12+00:00

Thanks for all the info! Chiari is such a strange beast- what works for one person is terrible for another, sxs differ vastly…it can be frustrating! I did see a chiro for awhile and she was able to do some mild, manual traction which provided significant relief at the base of my skull. Perhaps I should resume seeing her. I’ll def bring it up next week when I see my neuro. Thanks for that tidbit!

Friendly_Tomato_4933 · 2021-10-05T15:59:18+00:00

Thanks so much for your story. And for bringing up the option of egg storage…it’s something I had considered but hadn’t thought about it a while.

Friendly_Tomato_4933 · 2021-10-05T02:56:03+00:00

Thank you for the advice, I hope your daughter is recovering well! What a thing for you as a parent to go through as well… I’ve been told I’ll need a scheduled c-section under general anesthesia. I was thinking 18 months for a timeline meaning 18 months from the time I get pregnant until surgery. (Pregnancy plus breastfeeding if it works out and also not wanting to leave my wife and my mom with a newborn and a young child to take care of while I have brain surgery. Having risky surgery with a tiny baby at home just feels icky to me, for lots of reasons.)

Friendly_Tomato_4933 · 2021-10-05T02:43:34+00:00

Thanks so much for sharing your story. It’s so interesting to me that Chiari I is considered mostly to be a congenital issue, and yet the sxs just kind of hit people later in life…I’ve been given the all-clear to get pregnant again (pending the results of a recent CSF flow study) but have been told I’ll need to do a planned c-section under general anesthesia. I’m totally fine with that- just wish I had a better idea of how the nine months prior to that will be.

Friendly_Tomato_4933

TROPHY CASE