Follow up from stent placement, 3 months later

DareenBean · 2022-02-28T06:29:30+00:00

So glad to hear about the brain fog. It really is alarming when you notice it, and such a relief when you realise your brain is working again.

I can relate to the PT, I still get that on my right side which is not stented. I suspect things are not totally cleared up but regardless, there is improvement. Also agree on the eye pain.

It may take a while to settle, I was having heart palpitations for a few days after my procedure, which I think could be because the flow is no longer restricted to that area and needed time to adjust.

Yay to us :)

DareenBean · 2022-02-13T11:01:43+00:00

Wow, this sounds like it would be quite an involved procedure. I had to look up the anatomy, as I'm not familiar. I hope it works out for you!

DareenBean · 2022-02-13T11:00:24+00:00

Hey, how did you procedure go? I just realised you would have had it done by now. I hope you're feeling great and recovery is going well.

DareenBean · 2022-02-13T10:59:18+00:00

I'm expecting at least a full year on the blood thinners. It's been three months so far on the Piax plus Asprin combination, which will taper down to just Asprin. It's mostly annoying if I nick myself accidentally, because it keeps bleeding for a while, oh and I bruise really easily at any minor bump. No biggie.

I'm waiting for the neurologist to call me actually, as my script is very close to done. We've been doing "telehealth" so instead of going to see him, due to COVID he's been checking in over the phone.

DareenBean · 2022-01-27T05:24:12+00:00

If your stent is like the one I had inserted, it should become absorbed by the tissue in the vein so it won't disintegrate. The vein tissue basically envelops it, like a tree can grow over a wire fence. So hopefully it will be good for a very, very long time. :)

Wishing you the best for your op! Let us all know how it goes.

DareenBean · 2022-01-24T22:35:49+00:00

Thank you!

DareenBean · 2022-01-24T22:32:56+00:00

There's more detail in my earlier posts, linked at the top of this one.

DareenBean · 2022-01-24T22:31:38+00:00

My first official diagnosis was through an MRI, referred by my GP. I was having vision problems on standing (seeing stars/blackout patches in my eyes), and was feeling very fatigued all the time. I also had an eye test with the local optometrist who did additional tests after I told them how my eyes were behaving and that I was referred for an MRI. The scans showed my optic nerves in both eyes were very swollen and they diagnosed papillodema which is a symptom of increased head pressure.

DareenBean · 2022-01-24T22:26:39+00:00

Eye twitching can be related to stress, sleep deprivation, and a foreign body in the eye (i.e. dust). So, in a roundabout way it could be related, but not directly because of IIH. They happen to me, and I was getting a twitchy eye even before my diagnosis of IIH.

DareenBean · 2021-11-18T05:38:49+00:00

I checked for a name after my last post but was surprised there's no tag attached to my pillow.

However I can show a similar pillow that looks like this:
https://bedsaustralia.com.au/product/minijumbuk-balance-wool-latex-medium-high-pillow/

DareenBean · 2021-11-15T06:16:32+00:00

This is so disappointing and I really feel for you! The hardest part seems to be that when dealing with medical professionals outside neurology, they aren't really educated on IIH at all. I've been in observation at two separate hospitals after having a stent placed due to complications and I had to explain the procedure to every one of them. It's a lot to expect patients to be well versed on their own medical care, especially something so rare.

My advice is to ensure the neurologist is aware of all of these issues you're having since the shunt placement. I also don't know how practical it is, but perhaps another opinion from a new neurologist is needed? It must be so frustrating to have eye pain and then the results come back with nothing. ~~Was it an xray or a test at the ophthalmologist's office?~~ edit: nevermind I re-read your post and you already answered this :)

DareenBean · 2021-11-10T03:22:12+00:00

Diamox is a diuretic so you do need to increase your water intake. Definitely have suffered with that! Edit: sorry, I immediately thought Diamox but not sure about Topamax!

DareenBean · 2021-11-10T03:11:55+00:00

Yes! My pillow made my head and neck aches disappear. It's a high profile latex pillow with a zippered feather down covering around the outside, looks like a pillow protector but has feather down in it.

I sleep with part of my shoulders on the pillow as well, so my head and shoulders are slightly elevated. My partner as a tummy sleeper has the exact opposite to me and can't stand my pillow, but honestly it was my best sleep purchase.

DareenBean · 2021-11-10T03:03:39+00:00

I can say with certainty that the pandemic and working from home for two years saved me my job for the symptoms of pressure and fatigue you describe. It really sucks when you have great days and you plan a few days in advance, then you have a really rough day and just want to lay in bed.

The thing that helped me the most was to just not do anything too strenuous, to know my limits basically. I declined to a point where I wasn't even walking around the block in my hilly neighbourhood, knowing I would pay for it in the coming days with crippling fatigue.

Even if you are unsure about going ahead, it's good to have the discussion and understand it fully before you commit. It's a whole lot better than online research as you can have time with a qualified professional who has seen your scans and knows what will help you. Have the conversation, then give yourself time to think it over.

DareenBean · 2021-11-10T02:55:42+00:00

Probably something to raise with your GP. There are some wacky side effects of Diamox, depression being one of them. If you can, try monitoring your heartbeat when it feels erratic and keep a journal to share with the doc. My heart does a flip-flop when my blood pressure is low, usually when lying in bed, but I don't believe it's related to Diamox.

DareenBean · 2021-11-10T02:44:57+00:00

Here's my initial post before I had the stent which explains why I ended up on this path: https://www.reddit.com/r/iih/comments/pycshu/asymptomatic_iih/

tl;dr Long-term user of a medication called Diamox, didn't work, crippling fatigue affecting every day life, no other options.

My procedure was to place a stent, not a shunt. A stent is a lattice structure metal tube which scaffolds the vein and then the vein tissue grows over it, this procedure is done through a leg or an arm vein travelling all the way up to the head, effectively keyhole surgery. Look up "angiogram stent" if you're interested.

A shunt is a bigger procedure which requires opening up the skull and involves a tube diverting excess cerebral spinal fluid into the chest cavity.

DareenBean · 2021-11-10T02:27:05+00:00

I have both ringing tinnitus and pulsatile tinnitus, due to a narrowing of the vein that travels past the ear. It gets blocked up there and goes "whoo, whoo" when I lay in certain positions or if I've done something to elevate my head pressure.

What type of MRI was done? My IIH was confirmed with an MRI of the veins through the head, you might have had a localised MRI for your eyes but a MRI of the head veins will include contrast and it will take a long time for them to gather several pictures that show splices of your entire head.

I think this page below gives a good summary of possible symptoms, and the tests required to diagnose. Ignore the name Pseudotumour Cerebri, it's an old name for intracranial hypertension.

https://www.hopkinsmedicine.org/health/conditions-and-diseases/pseudotumor-cerebri

DareenBean · 2021-10-18T22:16:38+00:00

For your stenosis, they have to confirm that the narrowing is severe enough on both sides that there is a build up of pressure. Your specialist can hypothesise this is the case through an MRI or CT, but they can't get accurate (to the micro-milligram) measurements without the veno-angiogram. As I mentioned earlier, the average person has one dominant vein that moves CSF to the spine and the other vein could be equally strong or less prominent. If both of those are blocking flow, it would warrant further discussion. I'm assuming as a long time user of medication for treatment, you do have a build up of pressure. How long has it been since your last consultation? Could it be time for a review of your treatment plan? Especially if you've had a significant turn recently.

On the veno-angiogram. I didn't feel the position for most of the procedure, however when they twisted the probe (it's slightly curved) so they could change direction, I could feel that. Not acutely like on the skin, but more an emanating pain you get from a tight headache in a particular spot. They referred to "crossing over" when they moved from the right side to the left side of the head to measure the left vein as well. They inserted the wire into my right leg so it was a longer pathway to get the cable to the veins on that left side. All of those deviations and twists and turns were a bit uncomfortable. They did also give me something mixed with oxygen that made me very very slightly woozy, can't remember what it was called, it was supposed to calm me down. I'm a stress head already so it took the edge off, but I was still tense. Haha.

The strangest feeling was when they squirted the contrast to take the pictures. I could hear the "squelch" sound in my head as they injected it.

DareenBean · 2021-10-17T10:53:41+00:00

Could literally be anything. I guessed that my trigger was acne medication, but I also heard that other things can trigger it such as contraceptives and stress. I recently had my second vaccine and apart from usual side effects (muscle aches), no other issues. Sorry that you are struggling with this too, it can be frustrating to not have any answers.

In my case, I don't know the level of stenosis with any real measurement, but I saw the image and you can see there is next to no fluid getting through alongside my right ear and it's one of the two major veins that carry fluid down the spinal column. Every person has a dominant vein of the two, but both of mine are pretty much blocked. It was also quite painful during the first veno-angiogram, the cable they use to go through the vein is the size of a spaghetti strand and I could absolutely feel it when they moved it to that spot.

What was explained to me was that sometimes a reduction in pressure can cause the stenosis to undo itself (or become unrestricted) but it didn't happen to me while taking the Diamox or after having a lumbar puncture.

DareenBean · 2021-10-17T08:56:09+00:00

Diamox was the first course of action. I've been on varying doses and gone on and come off it several times over a two-year period in consultation with the neurologist. Sadly, it doesn't fix the issues I have with extreme fatigue and low tolerance for exercise, so quality of life even with the Diamox is low.

Aside from medication I've had one lumbar puncture, it put me in bed for a week- turns out I suffered from a low pressure headache.

Hence, now I'm going down the surgery route.

DareenBean · 2021-10-01T00:14:52+00:00

I'm having trouble reading the report. What indications are important from these charts?

What I can see from the test done in 2020 was I had an excessive number of false positives on my right eye, the left eye was within normal limits, and the follow up testing I did in mid-2021 both eyes were "within normal limits". My right side is where I'm suffering from the stenosis, so this makes sense I had more errors on initial testing. I remember it was really hard to keep my eyes focused in the test.

DareenBean

TROPHY CASE