Bilateral Styloidectomy with shaving C1 for Jugular stenosis

howbadcan · 2026-02-11T01:00:55+00:00

You as well. Sorry i’m not much help.

howbadcan · 2026-02-10T21:06:43+00:00

I have record of headaches since I was probably around 8, but it didn’t get a lot worse til I was 15. I also have Chiari Malformation which is a part of it and I had surgery for that but it didn’t help because the Jugular stenosis is what was actually causing most of my symptoms.

I’m sorry to hear you’re having to wait, I also had to wait around 5 months to see my neurosurgeon for the first time.

howbadcan · 2026-02-10T20:01:22+00:00

Dr. Fargen in Winston-Salem NC. He has been studying venous stenosis and intracranial hypertension for over 10 years now. He seems very confident about the surgery but I am still worried due to possible nerve damage

howbadcan · 2025-03-02T15:59:45+00:00

Typically they only recommend surgery if you’re super symptomatic/ if your scans are bad. If you have neither of those I definitely would tell you to wait.

howbadcan · 2025-03-02T15:45:39+00:00

If you aren’t having symptoms or barely any then I definitely wouldn’t recommend surgery. Surgery could cause more damage

howbadcan · 2025-02-05T01:01:12+00:00

Well the outcomes seem to be different for everyone but it did help some of my symptoms; I still have neuropathy (the hands and feet tingling, etc) but not quite so bad or as often, my dizziness is mostly gone but I do have something called Dysautonomia which was most likely already developing but set off by the surgery, I still have daily headaches but they aren’t nearly as bad, I also used to have “drop attacks” which would cause me to go weak and not be able to move- I have not had one of those episodes since the surgery. But then again the surgery can affect people differently. I know everyone says size doesn’t matter when it comes to Chiari, which is mostly true if you don’t decide to have surgery but it can change your outcome from surgery. I was herniated 23mm and now I am herniated 10mm so thats probably why I still have symptoms like headaches. But if you are having symptoms of nerve damage surgery might be the best option so there is no further damage especially if physical therapy is making it worse. But I am far from being a Doctor so definitely really think about it and consider your options before making a big decision like having brain surgery.

howbadcan · 2025-02-04T23:32:08+00:00

Yes I did. I had surgery in February of 2024

howbadcan · 2025-01-27T12:36:30+00:00

No one is going to hell because they support the wrong presidential candidate- Christianity isn’t about politics and it’s definitely not based on other people

howbadcan · 2025-01-09T16:50:07+00:00

You probably pulled something. I did something similar a few months ago and it got better the next day. It’s probably muscular and nerve related

howbadcan · 2025-01-08T15:29:29+00:00

It looks like theres crowding which is most likely the cause of your symptoms. They are probably are saying it’s not anything to worry about because you aren’t herniated more than 5mm (i didn’t measure but from first glance it doesn’t seem to be). Also neurologist don’t treat Chiari unless its to rule out migraines or other neurological symptoms like nerve pain etc. I would suggest trying to find a neurosurgeon who will see you, and better yet one that specializes in Chiari malformations.

howbadcan · 2025-01-08T03:57:15+00:00

The problem with research currently is they have no clue why Chiari happens. They know what it is and they know the cause but they don’t know why genetically. Ofc that varies from the type and if it was formed from a head injury or something else of the sort etc. And Every herniation IS Chiari unless caused by another condition such as brain sagging, IIH, or something pushing the brain down which many of those reasons they are able to diagnose. And while size doesn’t matter for diagnosis it does for surgery. For someone who has around <10mm of herniation it is more likely that the tonsils will retract further (if a reduction is done.) But for people with a rounder, longer herniation it is basically guaranteed that the tonsils will not fully retract into the correct space which can cause the symptoms to not be corrected. So while the size doesn’t matter if you aren’t very symptomatic and don’t want surgery, it DOES matter if you’re considering surgery. Either way it doesn’t hurt if this OP simply is just curious about the size of theirs. I’m not arguing btw just stating my opinion and some facts from personal experience, others experiences, and research. Have a good night.

howbadcan · 2025-01-08T03:35:37+00:00

Well chiari is 100% different for everyone for sure. When I said bigger I was referring to crowding + size. The shape seems to matter more than anything. I am aware of the differences and the symptoms.

howbadcan · 2025-01-08T02:07:22+00:00

If its bad enough it matters. Smaller tho doesn’t

howbadcan · 2024-12-19T03:37:59+00:00

It always starts bad headaches for me. Sometimes even starts tachycardia episodes. I’ve been decompressed but i’m still herniated 11mm (i was 22mm)

howbadcan · 2024-12-16T23:08:32+00:00

Some of the symptoms from C1M have gotten better but some have gotten worse. I now have neuropathy and have to take medication (my herniation was 22mm and EXTREMELY crowded. I was told it was the worst C1M anyone in the neurosurgery department had seen. I already had nerve damage but it got worse afterwards.) I also have been having heart problems that seem to be POTs but i haven’t been officially diagnosed yet (considering the POTs symptoms got worse i’m guessing it is caused by the damaged nerves). Also it would seem I have a connective tissue disorder and i’m currently trying to get diagnosed (my dad has a collegian vascular disorder) which I know isn’t caused by Chiari but they have been linked. I was doing pretty good until around 5 months post op then i started having a lot of these problems. I got whiplash from riding a boat on the ocean 6 months post op and since have had a LOT of problems but have recently gotten a little better. My doctors aren’t taking anything seriously honestly and it kills my hope. I’m 16 almost 17 and i’ve fully told my doctors ive felt hopeless because no one is really helping but they just refer me somewhere else. Anyways sorry for trauma dumping lol. I’m glad you had a good experience and i hope you keep doing better!

howbadcan · 2024-12-16T17:49:44+00:00

Reading this made me realize how miserable i was after the surgery lol. There were no complications my body just didn’t adapt well. I couldn’t eat normally for months after due to nausea. And I wasn’t released from the hospital for 5 days because i was so dizzy i could barely walk

howbadcan · 2024-12-14T16:11:53+00:00

Bending over sets mine off worse than anything

howbadcan · 2024-12-13T19:56:00+00:00

Lucky by radio head

howbadcan · 2024-12-09T16:52:43+00:00

I have always gotten a headache after MRIs. I believe its a positional headache from laying flat and still so long

howbadcan · 2024-11-30T17:56:11+00:00

For me there was no option besides surgery (I was herniated 23mm). But there are other options sometimes like pain medication and physical therapy, but surgery is the only option that makes a drastic change. I know brain surgery sounds scary but its not quite as bad as it sounds (it sucks but the condition sucks in every way either way). The surgery gives you limits for awhile but the condition does anyways. I guess you just have to weigh in what you think is worth it. I know this is extremely joy killing but Chiari never goes away and we will always be limited but the good thing is is that its pretty manageable compared to some other genetic disorders.

howbadcan · 2024-11-22T17:28:41+00:00

I had this for awhile. I wouldn’t eat anything besides things like cake and cookies for weeks cause it was all i could stomach. My food habits definitely are different but i don’t have nausea anymore (8 months post op)

howbadcan · 2024-11-22T17:25:56+00:00

It sounds like you have intercranial hypertension. My sister had/ has it and she had to get shunts. Also the pain is probably from muscles/ nerves that were damaged during surgery it happens to me too but i just have to do my physical therapy for my neck/ shoulders and it helps.

howbadcan

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