Facial Flushing after 1 month of DAVF embolisation

Hello,

Newbie here. So far feel very blessed to have had the wonderful Richard offering information and support to my previous posts.

Today I have a different question. Has anyone experienced facial flushing 1 month after DAVF embolisation? No other symptoms besides fatigue, and progress to date has been steady until yesterday when it began with a headache which was treated with pain killers and then the face flushing started intermittently. Ongoing today as well.

We thought it could be a reaction to the radiation or blood flow readjusting to its normal routes, but unsure.

I will call the hospital on monday but wanted to see if anyone here has had a similar experience or any thoughts around this.

Thank you.

SRMi

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I’ve actually never heard of anything like this personally. And I’ve not experienced it. I’d see what your doctor has to say.

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Is it on the side where the embolization was done?

I felt like my head/face were on fire for about 6 weeks after my embolization. Along with periodic odd aches & throbs throughout my head.

Have you had your follow up angiogram?

All of this is definitely a science, but not perfected science - that’s for sure

Like Richard told me, it takes time to heal & symptoms will gradually go down/away.

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Hey SRMi,
I am yet to hear of anybody having exactly the same route on this neuro journey. We are all wired differently, so the outcome can also be very individual. One month post procedure is still relatively early on in your recovery and that idea of ‘readjusting blood flow’ makes sense. I had a craniotomy but the flushes I experienced were not regional, but from head to toe and it would roll over me from head to toe like a wave. And those headaches, just WOW intense, the painkillers only just touch the sides, reducing the pain but not killing it completely.

My whole body temperature regulation was a mess. When it’s cold, I sweat, cooling me further and the heat knocks me badly. I have to be able to control my environment with refrigerated air conditioning in the heat and be able to wrap up in the cold, to try and assist my body to manage. It has improved somewhat over the years, but some day’s I just hibernate. Admittedly, I’m in Australia, so for 1/2 the year the heat can be a bit extreme. Yesterday we got to 90F, the temperature outside today is 95F, so I hibernate under an air conditioner.

I am now years on from my last major neurosurgery ('13) and I’m still on a seesaw (ie up/down/up/down) of symptoms today. Some days that’s manageable, some days it’s like ‘Stop the world, I want to get off this ride’, I never can tell what today will bring.

I MUST also agree with both Mike and Richard

How long? No one can say with any guarantee. For some the symptoms dissipate fairly quickly, for others, not so much.

Merl from the Modsupport Team

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Agreed for sure!

I so far, have been very fortunate - everyone is different - that’s a fact

Biggest issues I deal with is extreme anxiety(which has never been an issue before) - physically, I seem to alright

But, yes - body temperature regulation was a huge issue for about a year. Now, I seem fine - so far - sort of. . . It just got cold here again & it hits me so different - I just get the shakes all the sudden. Last year when it gotten to the cold season, my head just started throbbing & I actually written a thread about it - ever since the brain got “new plumbing”(neuro’s words, not mine) everything has been quite different to say the least.

Personally, I feel very “lucky” :pray: to where I am today mentally & physically - but, it’s definitely different to say the least

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Hi Mike,

Thank you for replying, especially given the state of our UK health service, we cant even speak to the specialist nurse until Monday

The flushing is all over the head, face and hands. It comes and goes. Really strange.

I am so glad to hear that you have come through the other side of this journey. And what a journey this is!!

Gah, i keep forgetting to answer your question - angiogram is booked for May 2022!! Dont know why the delay.

SR

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Thanks Merl

So helpful and reassuring to hear this. Panic is immediate with unknown symptoms, and not having the specialists at hand to alleviate fears is problematic as well.

Its just the fear that new symptoms=failure of embolisation :roll_eyes: Hard not to think that way, but hearing that symptoms can vary individually is heartening. And to hear that you had similar symptoms is also heartening. :pray:t4:

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Merl,

Just wanted to say that you have had one hell of a journey and I really commend your courage and fortitude.

Reading through all your experiences gives us hope and determination to win this one. Thank you.

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I think you need to talk to the neuro team about it but how long does the flushing last?

I’m asking because (as you may have read) I got scotomas for several weeks post embolisation. I attributed them to brain irritation and effectively migraine aura or migraine-like aura. They lasted typically – in line with aura and scotomas generally – about 20 minutes before going away again and they became rarer as the radio contrast material was dissipated by my body. I’m just wondering if the flushing is very temporary like this whether it is similar in source but affecting a different part of the brain, so giving a different sensation.

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Thanks srmid,
I don’t know so much about ‘courage’ nor ‘fortitude’. When it comes to neurosurgery, they don’t do it unless it’s REALLY needed and by that time courage doesn’t actually come into the equation. Sure I could have said ‘No’ to surgery, but the likelihood is that I’d be dead by now. And once I started the process, well, it has been a huge rollercoaster, I had to grit my teeth and go with the flow.

I must also agree with DickD, you need to consult your neuro team about the flushes. Hey, it could just be a post op side effect. But if it’s something that needs some further investigation then the team needs to know so they can make such an assessment.

Merl from the Modsupport Team

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Hi Richard,

Thank you for your thoughts.

Spoke to the neurologist who suggested we speak to the GP as he thinks it could be unrelated to the surgery. The nurse, on the other hand said that it could the blood vessels creating new pathways, which seems a more sensible explanation.

The flush lasts for 5 minutes or so then abates. It has reduced in frequency I must admit.

We will watch and see.

SR

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Spoke to the team Merl, and as i replied to Richard above, neurologist says unrelated while nurse says new blood vessel routes.

As you say, this is a learning curve, we will take it one day at a time.

Again thank you for your input, really appreciate it!

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I’d mention “migraine aura?” to the GP and see if they think it a possibility. I always wait until they’ve run out of ideas before I pitch in my own rather than lead the witness but maybe worth questioning, especially if it is getting less frequent like mine did.

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Just a quick note from TJ. Never underestimate the effect of inflammation on Everything. The closer you get to the brain stem (and the parietal lobe is about as close as you can get) the longer the inflammation takes to go down. We are talking months sometimes.

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Hello @srmid I do agree with everyone to contact the neuro team regarding the flushing- the only time I have had this happen is non related davf allergic reactions- as someone meantion we are all different
There is also something called Dysautonomia and there many different types and many drs dont know about at least here in the states. Dysautonomia International: For Patients

I have something called Ehlers Danlos where many of us have some form of Dysautonomia my younger sister has the form POTs pretty badly and gets flushed in the face - I have a different form where I dont sweat, but we all including my mother have really low blood pressure.
It was only normal range when my DAVF was in full swing,

I believe there used to be someone on here called MountainGirl ? that had an allergic reaction to the medical glue but I am not sure about her symptoms. I had glue and onyx during my embolism but I am also dealthy allergic to Iodine so I am not a good benchmark,

Please keep us updated on your husband and I hope he feels better .
Hugs
Angela

Dear Angela,
Thank you for your thoughts, we will look into the conditions that you mention.
Husband is improving, fewer flushes, still with vestibular issues and otherwise doing well. So grateful to have caught this in time.
Best
SRao

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This definitely makes a bit of sense. When I first came out of mine, my temples would take turns throbbing - due to the new pressure being pushed through outside of my head

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