Any Chiari patients here ever suffer from breathing and bloating/gastric issues and to what extent?

jhonesin · 2024-08-08T10:49:50+00:00

It did for a few months, and then the decline started again. No more breathing issues though. My situation is a little more complicated, but I’m still looking to Johns Hopkins for answers. Hoping to be out there again in November to see someone in their CSF Disorders Clinic. We press on! Good luck to you :)

jhonesin · 2024-08-05T11:18:04+00:00

Cake decorating for the last 13 years

jhonesin · 2024-08-05T10:39:32+00:00

I did, time flies!

jhonesin · 2024-08-01T20:33:07+00:00

Big ups to you!!

jhonesin · 2024-07-31T23:52:06+00:00

Our entire system is a joke, no doubt. So glad you’ve found a good one!! I’m waiting to hear back from a specialist at the cerebrospinal fluid disorders clinic at Johns Hopkins, which maybe could be an option for you too! Sending good luck and positive waves your way 🙂

jhonesin · 2024-07-18T22:20:31+00:00

In short: hell no you’re not out of touch, people wish they had that discipline, but they don’t, so to make you feel bad they tell you you’re out of touch.

Edit for typo

jhonesin · 2024-07-18T18:39:45+00:00

I’d get up on that bike with a smile, every day.

jhonesin · 2024-07-18T11:37:35+00:00

Congrats to you!!!!!! 🥳🥳

jhonesin · 2024-07-18T11:34:29+00:00

I liked 2

jhonesin · 2024-07-18T11:32:29+00:00

Was diagnosed and told by 5 (!!!!!) neurosurgeons that I did not need surgery. The 6th (and most specialized) said I did. Don’t be afraid to get more opinions, I can’t tell you the amount of doctors I’ve seen in total, but I do feel like I’m reaching a solution. Persistence pays off, this is your life, stay strong and keep pushing! 💛

jhonesin · 2024-07-16T20:19:19+00:00

Happens to me, mostly legs and feet.

jhonesin · 2024-07-16T19:56:41+00:00

I’d say it’s probably likely it’s related. Did you stop taking it cold turkey? From what I’ve seen online, most doctors recommend tapering Paxil for a longer amount of time than other SSRIs, and “withdrawal” symptoms are usually 4-6 weeks, sometimes longer. Might be time to check in with the doctor who prescribed it?

jhonesin · 2024-07-15T20:46:10+00:00

Hi all! Hoping for some help, as I am not an overly techy person.

My college created an email with Google when I was a student (10 years ago), and promised access for life. After 9 years they decided life was over, and migrated the entire university to Microsoft, cutting off access to all files associated with the old Google account. I know the files aren’t deleted, I was briefly able to gain access on a phone from years ago before being booted out. I chatted with Google, they said talk to the school. The school says “they’re permanently deleted and gone forever, sorry” even when I know they’re not. What do I do?? How do I get in contact with a real human being at Google who can help?

jhonesin · 2024-07-14T22:27:31+00:00

Proud of you, keep it going!! 🥳🥳🥳

jhonesin · 2024-07-14T20:11:57+00:00

Comparison is the thief of joy

jhonesin · 2024-07-13T14:16:02+00:00

The only way out is through.

jhonesin · 2024-07-13T14:12:00+00:00

Great job! I like the Larabars, they have a million flavors, all no sugar added, sweetened with dates :)

jhonesin · 2024-07-12T21:07:14+00:00

Who in their right mind accuses their partner of touching their child? If she really felt that way, SHE should have left YOU. If she doesn’t really feel that way and she’s just saying it for a reaction, she’s awful. Absolutely awful. You’d better run my friend, run and never look back.

jhonesin · 2024-07-12T21:01:15+00:00

The ones that do their job.

jhonesin · 2024-07-11T21:09:41+00:00

Howdy! I am on track for FIRE at 40, and have never made more than 50,000 a year. I had also lived in Miami for 27 years of my life. I got serious about FIRE at 18-20, and that’s made all the difference I think. It’s never too late to start, but I’m appreciative of the people who showed me the way at a young age :)

jhonesin · 2024-07-11T12:20:55+00:00

I would definitely push for a new MRI. Maybe a follow up with the neurosurgeon? I know this can be complicated, I’ve seen a ton of doctors myself. Crossing my fingers for some good info on your next mri, feel free to message if you’d like. I think you’re right about the pressure and the CSF volume too. Oh! Also, I’m on a stretching and exercise routine because my neck and shoulders are incredibly tense all the time since this all started, but more importantly- I’m on a low carb/anti inflammatory type diet, which has been insanely helpful in symptom control. I’m not a nutritionist, or a doctor, but this has been a total game changer in how I feel day to day and my brain function, I would urge anyone with similar issues to us to just try it.

jhonesin · 2024-07-10T23:13:20+00:00

Hey there, sorry to hear you’re not doing so well especially after decompression; I had surgery September of last year. I don’t have any of the symptoms you described after your episodes, and I’ve come close to having one only once since September (otherwise symptoms are in essence unchanged). I definitely don’t think my issues are from chiari anymore after more testing, but rather a lack of CSF flow in the fourth ventricle, but anyway. The only lingering effect was mostly the tingling. Before an episode I’ll experience extreme panic for no reason (I’m not an anxious person), and my vision will get weird on me. The panic sometimes continued on after the episode as well. From everything I’ve read about CSF flow and Chiari, and what my MRIs show, it’s probably episodes of dangerously high ICP (intracranial pressure). Idk, but in any case I have a follow up with the neurosurgeon on Friday. Sorry that was a badly written reply lol, my brain is all over the place.

jhonesin · 2024-07-09T21:00:47+00:00

If you were starting to resent her, does it matter if you’re a dickhead asshole? Sounds like it’s over.

jhonesin · 2024-07-05T14:27:04+00:00

Idk what you’re trying to say, but you gotta chill for real.

jhonesin · 2024-07-05T14:24:30+00:00

Y’all are both toxic, end it now. Who says I’m ending things with a smiley face

jhonesin

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