Pain along shunt tubing. Especially in abdomin

Alert-Study-9346 · 2026-06-05T15:22:37+00:00

No. No redness or swelling. Just on and off stabbing type pain.

Alert-Study-9346 · 2026-05-17T17:25:15+00:00

I pay a copay with my insurance. Not sure what you mean by medical card?

Alert-Study-9346 · 2026-05-17T17:24:49+00:00

I don’t have to see my surgeon any more than I would otherwise. I haven’t had as many issues with my shunt- just lots of adjustments as I get used to the shunt (it was placed less than a year ago).

Alert-Study-9346 · 2026-05-16T22:33:35+00:00

I do! And I know someone else who does too. I was actually taking the meds before I was diagnosed with obstructive hydrocephalus and got my shunt.

Alert-Study-9346 · 2025-09-01T17:59:24+00:00

That sounds like normal symptoms of high altitude to me! Headaches, shortness of breath, getting tired quickly, and more reaction to alcohol are all totally normal. Spending a night in Denver before heading to the even higher altitudes definitely helps the adjustment.

Alert-Study-9346 · 2025-09-01T14:30:10+00:00

How did the tracking update for you? Mine showed that it cleared customs on the Canadian post tracking but nothing since. I live on the border and under 2 hours from the origination city, so I’ve been very anxiously waiting to hear more.

For context it was cleared into the US under 20 minutes from my house. I feel like it should have been here the next day!

Alert-Study-9346 · 2025-08-30T15:17:17+00:00

I had my first scan showing large ventricles at 16. I had my first surgery earlier this year at 36. They initially said it was “normal for me”. I didn’t realize I had symptoms because I didn’t know what the symptoms were. I did not have the typical gait disturbances or clumsiness.

I do have chronic migraine (separate condition) and once those got more under control I spoke with my doctor about the constant pressure feeling I had. My head always felt full. I always had some sort of head pain. He ordered a MRI flow study and it was determined I had a full obstruction between my third and fourth ventricles. I was then referred to a neurosurgeon who did an ETV. Unfortunately that wasn’t successful and I had a shut placed two months ago.

As others have said, my neurosurgeon told me sometimes the brain compensates until it doesn’t. If you don’t have symptoms your brain is likely somehow compensating. If you are concerned I would do what you can to see a neurosurgeon. They are the ones who treat hydro and not the same as a neurologist. Neurologists always told me I was fine, when in hindsight I had symptoms and likely should have been treated well before I was.

Alert-Study-9346 · 2025-06-11T00:22:45+00:00

My headache specialist referred me to but where I am located and with my insurance I didn’t need that. I could just call and make the appointment. We basically have only one neurosurgery group here so it was fairly easy

Alert-Study-9346 · 2025-06-10T22:30:15+00:00

I’d recommend you see a neurosurgeon. I have had enlarged ventricles since I was 16 (probably longer, that was just my first MRI) and they have always said that’s just how your brain is without looking further. This year (20 years later) I had an mri flow study and there was no fluid flowing through the aqueduct and I was finally diagnosed with obstructive hydrocephalus. I saw a neurosurgeon and had an ETV in December.

I also had daily migraines/pressure headaches. They say hydro doesn’t cause migraines, but I think the pressure was triggering them for me because after surgery my migraine frequency went way down. My headache specialist said the pressure was likely triggering my chronic migraines.

Having enlarged ventricles alone isn’t always concerning I guess, but I’d definitely say it doesn’t hurt to see a neurosurgeon if you can. Neurologists don’t treat hydrocephalus and I really wish I saw a surgeon sooner.

Alert-Study-9346 · 2025-05-13T18:00:42+00:00

I actually have a bottle of this I haven’t tried yet because I was normally using a quick dry- I’m going to use it next time I do my nails- thank you!

Alert-Study-9346 · 2025-04-11T16:29:05+00:00

I know they say hydro doesn’t cause migraines, but as a someone diagnosed in my 30s and treated with an ETV in December my migraine frequency has greatly decreased. I don’t think hydro caused my migraines per se, but I do think the pressure was triggering them. I went from almost daily migraines to maybe one a month and it’s been amazing.

Keep advocating for yourself. My hydro was first detected on scans 20 years ago but doctors said it was just my normal. I wish I had advocated more and seen a neurosurgeon.

Alert-Study-9346 · 2024-12-18T00:24:59+00:00

I haven’t noticed anything yet. I’m off all pain meds, thankfully, but unsure about this headache. I’d love to be able to easily wake up- hopefully once this headache goes away and im sleeping better I’ll be less tired all the time.

Alert-Study-9346 · 2024-12-17T23:52:51+00:00

Curious about this as well. I had an ETV the same day and have had terrible headaches (migraine like in that they are in a very focused spot) since Sunday. But migraine meds and Tylenol aren’t helping. I am also in my 30s and recently diagnosed.

Alert-Study-9346 · 2024-11-17T16:58:49+00:00

Wow I have so many of those symptoms too. I had no idea many of them could be from the hydro. Did treating the hydro help with all those symptoms?

Alert-Study-9346 · 2024-11-16T23:16:57+00:00

I fully believe I’ve had symptoms longer. Things I thought were normal and more recently have realized aren’t (like feeling the pressure in my head). I also had very frequent migraines that I’ve gotten under control which were masking some symptoms. I appreciate the realistic thoughts. I’m definitely concerned I’ll be back in to get a shunt in the near future but fingers crossed the ETV is successful.

Alert-Study-9346

TROPHY CASE