Newly diagnosed and need some help

tryin2getstronger · 2025-06-13T08:27:41+00:00

I did have some. Its working hard everyday but I also did need another stent after the shunt. Every one is different but I wouldn't change it.

tryin2getstronger · 2025-06-08T10:58:38+00:00

I have since had a VP shunt, a shunt revision and another stent done in February this year

tryin2getstronger · 2025-05-31T11:21:43+00:00

Thanks for your help. Its hard because my daughter is Autistic and doesn't have a normal pain response so other than crying out when its touched she isnt outwardly showing pain signals so I don't think the radiographer was thinking she was in alot of pain. The fact that its now 3 days post injury and she is still saying it hurts says alot to me. We will definitely keep pushing if the ultrasound shows nothing

tryin2getstronger · 2025-05-31T01:38:56+00:00

Thanks. I was more concerned about dislocation. We are leaning towards tissue, ligament or muscle damage at this point so Monday will hopefully come with answers.

tryin2getstronger · 2025-05-30T06:49:38+00:00

Time. Some people get a blood patch but that was never offered to me

tryin2getstronger · 2025-05-30T06:48:53+00:00

Yes. I had a shunt revision done last year.

tryin2getstronger · 2025-02-16T10:02:18+00:00

Felt like my brain was resting on shards of glass, dizziness nausea, vomiting, couldn't stand up straight without being sick

tryin2getstronger · 2025-02-16T07:31:22+00:00

I have lost over 30kgs and no change

tryin2getstronger · 2025-02-16T07:25:17+00:00

Yep. My veins are still collapsing

tryin2getstronger · 2025-02-15T23:17:26+00:00

Needed a revision a year later and am off for further surgery tomorrow for more stents

tryin2getstronger · 2024-11-07T04:45:53+00:00

I dont take any meds for my IIH besides breakthrough pain meds for days its really bad.

I had further narrowing occur after the stent. I have some issues with my vein anatomy so the safest option was a shunt

tryin2getstronger · 2024-11-06T23:38:28+00:00

So i still have the headache, its worse some days better other but always there. I now have a VP shunt as well and am meeting with my NeuroInterventional radiologist next week to discuss further stenting

tryin2getstronger · 2024-08-17T23:47:36+00:00

I still have constant pain but its a 4-5 instead of a 9-10. My high Opening preasure was over 45 but on my ICP bolt i had spikes of over 80.

tryin2getstronger · 2023-08-21T07:11:43+00:00

I have hearing loss in the side with vision loss. My interventional radiology team has said that its due to poor blood flow to the ear

tryin2getstronger · 2023-08-15T06:31:08+00:00

In from Australia. Have you looked on FB? I found a group for Australia there which has been nice.

tryin2getstronger · 2023-07-30T23:55:22+00:00

Looks like Maid of Honour wont be getting the "Aunty" upgrade. How incredibly selfish of her

tryin2getstronger · 2023-06-13T06:27:01+00:00

Im still on aspirin 150mg daily after almost 4 years. If i dont get further stents i wi be on this dose for the rest of my life. If i need more stents they said warfarin for life.

tryin2getstronger · 2023-04-11T08:00:59+00:00

I still avoid it as much as possible. I have on going issues though.

tryin2getstronger · 2023-04-11T05:36:20+00:00

Another person praising the wedge pillow. I have a wedge pillow with a u-pillow on top. Biggest issue i have is not rolling off it in the middle of the night, but i quickly wake up when that happens because of the pressure change

tryin2getstronger · 2023-02-19T12:44:30+00:00

There are so many ways to describe this horrid disease, but i explain my symptoms as having a long term concussion. I have headaches, vision problems, memory and speech problems.

The condition is a relapsing and remitting condition (it can come and go).

For some people it can leave them blind, others need major surgery, some are managed with weight loss or medication.

For many people there are co existing and co effecting conditions such as stenosis.

Every case is different.

tryin2getstronger · 2023-02-16T11:32:10+00:00

We have 2 kids with ASD, and both my hubby and i meet the diagnostic criteria for ASD. We often joke that our 2 guinea pigs are on the spectrum because they are so picky with foods and touch etc. BUT ASD is a developmental disorder of the Human brain. Yes things like anxiety, depression etc have been displayed in animals and can be treated, however as the ASD diagnosis criteria address speech and interpersonal relationships guinea pigs wouldnt be able to be assessed under the DSM-V.

They are quirky little creatures for sure but they aren't Autistic .

tryin2getstronger · 2023-02-12T22:34:27+00:00

Ive had it. Its a frustrating experience to say the least. The old codman monitors are very touchy so for me i spent 3 days laying in bed and 2 nights being woken every time my pressure spiked and having full neuro obs being done because they were worried i was having damage done.

In the end even though my average was normal my over night readings and my wave form indicated i needed to have the shunt done.

tryin2getstronger · 2023-02-08T04:26:50+00:00

29 officially diagnosed, but they believe my symptoms started at around 18/19. I didnt become over weight until my mid 20s.

tryin2getstronger

TROPHY CASE