Post Embolization symptoms and sensations, new psoriasis, and wheezing

Types of Avm's Brain DAVF
1

Hello all, this is a long one, I've thrown together my post op symptoms. Bear with me.

I'm 7 weeks post Onyx embolization for 1 dAVF, 1 scalp AVF, and 1 face AVF all on same side of head. What I have noticed over the weeks in the area of the embolized dural AVF are:

-a vibrating-like sensation (a mild yet fast paced vibrating twitchiness) on my head in the area of the dAVF. I don't see it or feel a twitch with my hand but I feel it from within my head. I would compare it to standing next to a 18-wheeler or helicopter (engine running) not hearing the rumbling, but FEELING the rumbling on my head in that general area. This is more generally more noticeable in the evenings after being active or having too much caffeine, however sometimes also right after waking (if I wake up very cold or if my blood pressure has been pumping from having a nightmare)

- a scalp tightness over the dAVF, like somebody is pulling the hair in that spot. The feeling radiates to around and behind my eyes but hasn't affect my eyesight (knock on wood).

- a dull aching, bruised-type feeling (like how your head would feel a few hours after hitting it on something hard) For this feeling I sometimes take a 1/2-1 500mg tylenol

Post embolization of all 3 I've also had a moderate psoriasis flare and mild acne flare on my left side of face (AVF's are all left side of head). I've had psoriasis for 10+ years but never had it on my face like this. Left cheek has about 20+ bad psoriasis spots, started 3 weeks post op. But no new psoriasis on body. Managing it with Tazorac topical and fish oil intake.

Not being able to handle/ quickly adapt to sudden changes in temperature anymore (going from humid outside temp to AC, or from cold AC to hot/humidity outside, even if I'm dressed for it) taking me more time to physically adjust. Especially adapting to cold. I live in Florida and I love the cold, but now going from 85 degree humidity outside and then walking inside to 75 degree AC I have to throw on sweatpants, slippers, and a robe. That sounds so cheesy and ridiculous because us Floridians get made fun of for not handling cold, but this is majorly different from what I used to feel.

Dull teeth pain that comes and goes, mostly top teeth. I don't know whether it's from the radiation exposure during procedure or because they embolized some of of the mandibular vein for face avf.

Most concerning, I also have had about 8 episodes of what I believe to be asthmatic episodes. I've never had breathing issues prior to embolization and no major allergies other than horses and Iodine contrast. On the last day of taking methylprednisolone post-embo, and 6-7 times over the weeks since then, I've suddenly started wheezing. Grabbed and took 1-2 25mg Benydril/diphenhydramine. Wheezing started out of the blue but on one instance it was after catching a whiff of a cleaning agent. I worked around scented perfumes and candles for yearssssss (not currently) and never had a problem with breathing until post embolization. And if I go sniff my perfumes/candles, I'm A-OKay, so I don't know why it's happening. I'll be making an apt to see a pulmonologist.

2

The vibrating/buzzing sensation is likely to be turbulent vascular flow and that is why it is worse with caffeine, exercise etc - same amount of blood has to go somewhere else after embolisation so new but hopefully safer vascular pathways are likely!

About your shortness of breath - I'd see your GP or whatever your US equivalent is to rule out PE, especially if your symptoms were of sudden onset, accompanied by pleuritic pain, unexplained light headedness or acute breathlessness.
If you have a thrombophilia this is especially important.

3

Hello Emmy I had my davf embo done in April and I am still having weird sensations in my head just like you have described. I went back to see my neurologist last week who said the symptoms I was describing was a form of migrain. I don’t have head pain just sensations of a bruised tight feeling at the back of my head which radiates to the top of my head. These sensations can waken me from my sleep, like my brain is moving in a wave like sensation. I also have tender areas on my scalp when I feel or press my scalp with my finger. I have had one episode of a visual aura with no headache, which came on as a total surprise. In July I had a CT angio performed to see if the Davf had stayed occluded, which it had. I was told prior to the embo in April that I could be left with migrains. My neuro has booked me in for a further MRI next week, this he says is to put my mind at rest as he is almost certain that these sensations are migrains.

4

I don't want to say it was sudden, but it never happened before the embolization. So it has happened about once a week since the embolization with the first being a few days after. I don't have an exact thrombophilia diagnosis, but my bloodwork with prolonged PTT-LA on more than one occasion was enough for my hematologist to say "don't ever take hormones" (I wasn't on hormonal birth control during bloodwork). However she said it wasn't enough clotting proof to prescribe blood thinners. Unexplained light headedness is an almost daily, random occurrence for years now.

5

Hello Emmy. I was just wondering if you are experiencing head sensations still. Have had a consultation with my Neuro to get the feedback from the MRI scan I had in Dec. He says all looks ok but as I am experiencing these strange head sensations he recommends putting me on a drug which is used to treat epilepsy! i was curious to see how you are going on and if you are still experiencing any problems with your head after embolization.

6

Yes, I am still experiencing all of the sensations and some increase in headaches. What is the epilepsy medicine he wants to put you on?

7

Hello Emmey he has prescribed a drug called Lyrica, apparently you have to take this for about a month before you notice any change. I am on my second week, no difference so far! These head sensations are so annoying .

8

Any improvement?

9

How is it going now? Your initial post sounds so painful; I hope there has been some improvement. Sometimes I would keep noticing improvement for a full year. Whole different AVM for me; but what I feared was a sign the treatment made me worse, was actually a sign that the procedure was helpful.

Of course, you had some serious symtoms there! You had to address the serious ones first/ Immunology springs to mind. Is you sed rate elevated, indicating extra fluid/plasma ratio. I used to follow Mountain Girl here; her body reacted to the onyx like a foreign body. Her symptoms continued way too long, so she went to immunologist. Read her profile if you think it is related.

Maybe you are doing just fine: I hope so.