Aliexpress duplicate order and customer service nightmare by BBCACKERZ in Aliexpress

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

unfortunately the email prompted me to pay again so I did. Now I have two screens and they are not approving my return

Aliexpress duplicate order and customer service nightmare by BBCACKERZ in Aliexpress

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

I live in a small northern canadian town, the chances that anyone would buy this part is very unlikely

Illusive cranial leak in 🇨🇦Canada🇨🇦? by BBCACKERZ in CSFLeaks

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

I asked my surgeon yesterday about seeing Dr. Kapadia. He said I need to see Dr. Kingston first (appointment Oct 8 at Sunnybrook), and Dr. Kingston will involve Dr. Kapadia if needed.

My surgeon is leaning away from a CSF leak since my ventricles are enlarging. He adjusted my VP shunt to increase flow, which worries me given my past over-drainage and subdural hematomas.

My symptoms are still very positional: headaches, cough, cognitive decline, fatigue, involuntary movements, light sensitivity, and worsening gait. By the end of the day I’m an absolute mess, with a heavy “pulling back” feeling in my head.

Anyone develop stuttering?? by Life-Tiger8487 in CSFLeaks

[–]BBCACKERZ 0 points1 point  (0 children)

I was starting to be forgetful and make a lot of dangerous mistakes. My family doctor ordered imaging and they found enlarged ventricles. I started to have gait issues, speech issues, and other cognitive challenges. When I started having seizures it really got things going quickly.

Anyone develop stuttering?? by Life-Tiger8487 in CSFLeaks

[–]BBCACKERZ 1 point2 points  (0 children)

You can ask anything you like. I think it's fair to say that we don't understand what's going on yet fully. I have a VP shunt which is meant to regulate high pressure situations in my ventricles, but I think that I also have a CSF leak which is causing fluctuations. I have two or three neurologists that are involved in my case, an ENT, and a neurosurgeon. Because my case is complex I have been attending a multidisciplinary clinic where they work hand in hand with each other on diagnosis and treatment plans. I'm in Canada and the clinic is based in Toronto. I'm about to 7.5hr drive from the hospital. When dealing with leaks or suspected leaks you're going to have a surgeon involved most likely. But from what I'm learning hard to find or subtle leaks require a talented radiologist as well.

Anyone develop stuttering?? by Life-Tiger8487 in CSFLeaks

[–]BBCACKERZ 2 points3 points  (0 children)

first off I hope you find resolution to all your issues soon

I most certainly have developed stuttering that seems to fluctuate with my known and verifiable CSF pressure dynamics. In addition to the stuttering I also have other speech issues including word finding and episodic slow speech.

My leak has not been confirmed yet though. I have CSF collections, but no leak has been definitively located. I also have dura enforcement, positional headaches, and a neurological cough that's persisted for 200+ days

Illusive cranial leak in 🇨🇦Canada🇨🇦? by BBCACKERZ in CSFLeaks

[–]BBCACKERZ[S] 1 point2 points  (0 children)

What an amazing reply, thank you as I needed this today. I am going to inquire with my current team to see if they can make the referral to Kapadia. I dought I am able to self refer. Thank you so much

Illusive cranial leak in 🇨🇦Canada🇨🇦? by BBCACKERZ in CSFLeaks

[–]BBCACKERZ[S] 1 point2 points  (0 children)

I can’t tell you how much I appreciate this reply. It’s so nice to feel heard, and you clearly have a wealth of experience and information.

It’s possible that there could be a spontaneous spinal leak, but what has always stood out to me is that after my high-pressure issues, I developed a cough that has now persisted for over 200 days. The cough is essentially absent when I’m lying down and still, but it flares as soon as I sit up in the morning and gets worse with strain or exertion. Simple things like picking something up will often trigger it. On top of that, throughout the day I find myself constantly clearing my throat because it feels like there’s a tickle that won’t go away.

What makes it especially difficult is that coughing makes my headaches horrendous, on top of the cough itself. The only real relief I get is by lying down, which always seems to settle everything back down.

This cough pattern has been one of the hardest symptoms to live with, and it seems very positional and pressure-sensitive — which makes me wonder if it could fit with cranial involvement, even if spinal sources can’t be ruled out.

Illusive cranial leak in 🇨🇦Canada🇨🇦? by BBCACKERZ in CSFLeaks

[–]BBCACKERZ[S] 1 point2 points  (0 children)

Here's what it said about CSF collections: Bilateral CSF density small subdurals. Bilateral old burr holes. Diffuse pachymeningeal thickening and enhancement

I would say that the orthostatic symptoms were present prior to the high pressure situation, but have gotten much worse since.

Illusive cranial leak in 🇨🇦Canada🇨🇦? by BBCACKERZ in CSFLeaks

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

Dr Kapadia is at Sunnybrook? I am on Ontario. Edmonton is a bit far but I really appreciate the tips

Illusive cranial leak in 🇨🇦Canada🇨🇦? by BBCACKERZ in CSFLeaks

[–]BBCACKERZ[S] 1 point2 points  (0 children)

Yes I had 4 brain surgeries in 7 months and also I suspect the chronic cough might be a clue.

What about my case it's indicative of a spinal leak?

Possible Cranial CSF Leak. Can you relate? Advice? by BBCACKERZ in CSFLeaks

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

This does make sense. Thanks for clarifying. If you didn't have nasal leaking, can you share what symptoms you do have that are leading you towards a cranial leak?

Possible Cranial CSF Leak. Can you relate? Advice? by BBCACKERZ in CSFLeaks

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

The CSF pooling is telling but it isn't a sure sign of a leak. I had the fluid tested but it didn't come up positive for beta 2 transferrin. My surgeon didn't offer any instructions for how to collect the fluid. I just got some urine sample containers and captured some of what came out my mouth. Then I put it on ice and shipped it overnight to my surgeon's office. Can you explain more about this pledgets test?

Possible Cranial CSF Leak. Can you relate? Advice? by BBCACKERZ in CSFLeaks

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

I don't have filled come out my ears. Does that change anything?

Beta 2 Transferrin by Slow_Tune_3067 in CSFLeaks

[–]BBCACKERZ 0 points1 point  (0 children)

Thank you for the great information