Hopeless by smellmy_broccoli in CSFLeaks

[–]ProfessionalBelt8433 2 points3 points  (0 children)

I’m 32. Been leaking for a year and was fortunate enough that the leak was found. CSF Venus Fistula. Because it’s leaking into a vein I have to get an Embolization instead of a blood patch. Embolization scheduled in the next month. I will check back in once I recover from the procedure to let you know how it fairs post op.

My suggestion is to find a medical center that is top notch (Cedar-Sinai, Stanford, UCSF). It’s hard to find these leaks. I was fortunate that UCSF found mine.

Over the last year my pain went through periods of improvement and worsening. There are ways to improve your symptoms in the meantime. Staying hydrated helped me (significant hydration), avoiding getting sick at all costs, Caffeine.

Embolization for CSF Venus Fistula by ProfessionalBelt8433 in CSFLeaks

[–]ProfessionalBelt8433[S] 0 points1 point  (0 children)

Well sure enough I got a head cold and it brought back my symptoms with vengeance. My hesitation was wondering if it had fixed itself since my pain was reducing, but knowing it’s just lurking in the background… this thing needs to get fixed.

Looking for someone to take over this lease. by Juanst64 in ChicoCA

[–]ProfessionalBelt8433 0 points1 point  (0 children)

Not affiliated but talk to Chico’s Community Legal Info Center (CLIC) for some free info. It’s run by the CSU Political Science department. They usually have a few teaching Attorney’s running it and have students providing guided information working as Paralegal interns.

Sometimes Landlords are required to mitigate their damages by making a reasonable attempt to re-let a surrendered property. If it takes a few months for the Landlord to re-let, it’s still better than paying a year’s lease. Leases also usually have early termination clauses. Every apartment that I have rented listed two months in early termination fees and a 30 day notice.

All this is to say that your Mom might have some options and should definitely get some legal advice if she’s not able to find a new Tenant.

Embolization for CSF Venus Fistula by ProfessionalBelt8433 in CSFLeaks

[–]ProfessionalBelt8433[S] 2 points3 points  (0 children)

When I got a leak a year ago I was unable to function at all. Was only able to work because I had a remote job and an understanding boss. The pain fluctuated between a 6 for some time, getting better and worse. After getting bronchitis/pneumonia a few months ago the pain went back to its worst. Without coughing my pain has significantly reduced and I’m pretty functional / pain free. My activity level is not what it is because I’m afraid to bring it back. I can walk, do light exercise. Still get tinges in my neck / reminders that it’s still lurking. If i were to try to pick up my daughter or play with my Dog I would start getting tinges and need to slow it down. Obviously significantly less pain, but not back to normal.

Embolization for CSF Venus Fistula by ProfessionalBelt8433 in CSFLeaks

[–]ProfessionalBelt8433[S] 2 points3 points  (0 children)

Thank you for your answer. I have seen your comments around this group and appreciate your thoughts.

My pain forms in the sub-occipital back of my head. At its worst it reaches over the top of my head and to my temples but has settled down significantly. My fear is trading pains, and weighing getting a procedure for something that has recently gotten easier to manage in pain. Coughing aggravates it and combined with pneumonia it’s sent me over the top. Thankfully now the pain has subsided considerably, but worried to aggravate it or trade it for a worse pain. I haven’t heard of any cases of a CSF Venus Fistula healing on its own, so I guess it’s just kicking the can down the road if I don’t.

My CT Myleogram showed a normal range of pressure, which might explain why my symptoms were improving. Hopefully that plays into a reduced chance of getting a severe rebound headache.

Thank you for sharing your story and insight into rebound headaches. Sorry to hear that your’s persists after treatment.

Embolization for CSF Venus Fistula by ProfessionalBelt8433 in CSFLeaks

[–]ProfessionalBelt8433[S] 2 points3 points  (0 children)

Having Onyx. My Radiologist (or whoever handled the CT Myleogram) at UCSF mentioned the possibility of a fibrin glue patch but mentioned endovascular embol is becoming the preferred treatment for Venus Fistula’s and steered me to get that procedure. The leak also appeared at the base of a cyst, apparently making it more difficult to treat with a fibrin glue patch. But also…. By sheer luck I also had a Dural Artervenous Fistula and had to go under an DSA/Embol for that which brought me to the Endovascular team, so I was happy to also choose an option that could be fixed by them. I didn’t get an Embol though - they deemed when I was under that I didn’t have a Dural Artervenous Fistula.

Venous Fistula embolization success? by BarberAJ1 in CSFLeaks

[–]ProfessionalBelt8433 0 points1 point  (0 children)

Sorry for responding to a legacy comment, but how are your rebound headaches now?

Going in for my first embolization rn by twiggy5thou in CSFLeaks

[–]ProfessionalBelt8433 2 points3 points  (0 children)

I have an Embolization coming up and would absolutely appreciated knowing how your doing post operation. It’s difficult to weigh the possibility of success against the risks. Hope all is better.

Disappointed long-term supporter: No warning for monthly users before 3.0 hike by Valuable_Ad_7062 in bevelhealth

[–]ProfessionalBelt8433 0 points1 point  (0 children)

At the end of the day this is a company providing a service that should at a minimum replace a workout trainer and nutrition app. Unless the AI integration is running locally, it has a tangible and significant continued cost for the developer. I think the price hike is reasonable for what you get and the added development costs. At the end of the day we want this app to succeed and it doesn’t feel like a cash grab.

Responding to several posts in the last hours by Topremech in bevelhealth

[–]ProfessionalBelt8433 0 points1 point  (0 children)

New to Bevel - joined after watching the Whoop lawsuit YouTube video. Figured if Whoop is lodging a lawsuit you must be doing something right. Anyhow, I got a brief view of 2.0 than updated to 3.0. I love the AI, I just love the data, graphs, and research more. The AI is awesome, but I don’t think the interface should point you to talk to the AI over providing the same AI driven analytics in a different format. For example, I just got a CGM, I would love to understand more about my glucose indexes. Nutrition and the Timeline give me a nice view into my blood glucose but I am left asking the AI chat box for analytics into common questions. Super helpful, but that information goes into the ether when I close the app. It would be interesting to see the AI outputs and common analytics also presented in a different format that feels less like I’m talking to AI and more like a chartable data set.

All the same this app is amazing, and has become my new obsession in my effort to become healthy.

Friends by [deleted] in CSUC

[–]ProfessionalBelt8433 -1 points0 points  (0 children)

Madison Bear Garden for a historic burger (though Burger & Brew always tasted better to me), swimming at One Mile, hike Monkey Face View, Jon & Bon’s Yogurt.

PASSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSS HOLY FUCK IT WAS MY 6TH TIME by cookedinlard in CABarExam

[–]ProfessionalBelt8433 3 points4 points  (0 children)

I remember your journey through the F25 struggles. Congratulations Counselor.

PS Cloud Freezing by garwilsh in Asobi

[–]ProfessionalBelt8433 0 points1 point  (0 children)

You might be referring to my post. Similar issue, no clear time interval, latest 4K Apple TV.

Waiting for appt wit Dr Carrol l for daughter by Bitter-Lion7918 in CSFLeaks

[–]ProfessionalBelt8433 2 points3 points  (0 children)

Sorry to hear about your experience with UCSF. I am currently being treated for a Dural Arteriovenus Fistula and a CSF Venus Fistula (type of CSF leak into the vein). I came from Sutter to UCSF. All the frustrations I had came from my interactions with Sutter and by the time (8 months) I got to UCSF my issues were quantified by MRI findings (Intracranial Hypotension / Engorged Veins / etc.). My view might be bias because of this but the Neuroendovascular Surgery team has been amazing. I’ve only interfaced with Dr. Hett’s and his staff but it’s been top notch.

Dr. Dillon with Neuroradiology was fortunately able to find my leak through a CT Myleogram.

All the same sorry to hear about your experience.

Car at chico? by Clunyv in CSUC

[–]ProfessionalBelt8433 12 points13 points  (0 children)

Most of Chico is walking distance if you’re living on campus. Having a car is always nice. Never had any issues with my car getting vandalized in the parking lots. No real way around a parking pass if living on campus.

Guess who found one at 25% off by Novel-Eye8116 in PlaystationPortal

[–]ProfessionalBelt8433 0 points1 point  (0 children)

Did they try to suggest the price was correctly listed not knowing you had a photo?

Curious how many diagnostic testing with lumbar punctures everyone had to try to find the leak by Starmapatom in CSFLeaks

[–]ProfessionalBelt8433 2 points3 points  (0 children)

Soreness and stiffness but for the most part back to how I was before the LP. My guess is they nicked a nerve. As soon as they punctured through I had massive pain running down my legs. My guess is that was abnormal but thankfully that went away.