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AVM Survivors Network

Headaches and pains

#1

Hello Friends,

Last June I had an embolisation done for my dural AV FItsula. The docs could not close the whole thing because they said it was too deep at the time. They used Onyx to close it. Soon after that dizziness started and so did aches at the temples and behind the eye balls. I had another procedure 2 weeks ago using onyx and the docs confirmed closing the whole leak. Im hoping to recover . However I have been having a very tough time as whenever I lift anything even as light as a shopping bad from the grocery store, I start getting a headache from the temples to the top of my head and at the back of my eye balls and this continues for a few hours. I feel totally handicapped. I never had these symptoms before my procedures. Has anyone experienced these symptoms ? Any idea what it could be ? The doc say that these symptoms are not related, but I know for sure that they are as I was totally fine before the procedures. Please help !! thanks and regards atul

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#2

Atul,

I think the thing is that it is very soon after your latest procedure and it may have impacted much deeper / more significant parts of your brain than before.

I would say when I had my DAVF embolisation in 2017, it took several weeks to feel better and, indeed months and years to feel more normal. So two weeks post op is very, very early.

Have you got a re-scan in a month or two? Unless you get anything sudden or acute, I’d try to be patient and see how you are about the time of the re-scan.

An embolisation sounds very straightforward but in reality it is quite a big impact on your brain and it will be feeling quite assaulted at the moment. I would hope you’ll feel gradually better over the coming months. Take it easy, meanwhile but if you get anything serious going on, go straight to hospital.

Hope this helps,

Richard

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#3

I would agree with what he said. I had my most recent embolization Jan. 30, 2018. My doc said it could take 6 months for the blood to figure out what way to go instead. For the first 6 months, every Sunday I could look back and say, “I feel better than last Sunday.” Most of the time the improvements were measured in inches not feet.

I’m now 14 months out and I still don’t feel like everything is “settled” where it should be.

As a former teacher of mine liked to say, "Patience is a virtue! AND I AM NOT A VIRTUOUS PERSON!

You.are.not.alone.

TJ

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#4

Hi Richard, thanks.
After my first embolization last june, i did have a brain scan after 4 months but the MRI did not detect anything and showed all normal. It was after a brain angio DSA a few weeks later, that they found out that the leak was still there ( high flow). Then that is when i went in for my second embolization 3 weeks ago. The symptoms I kept having was dizziness as i expected but what was confusing and scarry was that whenever I lifted anything it would cause pain to my temples, behind my eyes and top of my head.
Now even after the second embolization I feeling the same pain when i lift anything. The docs surprisingly say that these symptoms are not connected and I really don’t know !! Was just wondering of anyone has gone through these symptoms of pain when lifting anything.
thanks

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#5

Hi TJ,

Im with you ! What are the symptoms or trouble you face ? is it just the usual dizziness ? anything else ? Whats surprising is that the docs told me that I would be completely normal in 3-5 weeks !!

regards

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#6

I agree the issue behind your eyes is not normal and would seem to be related to your AVM or the treatment that you’ve had, though could be a long way removed from where anything that has been done, hence the doctors insisting on there being no connection between the two.

If it were me, I would be bothered about it just as much as you but I would hope it abates as your brain settles down post-operation. I’d definitely ask them to have a look in that area when you go back for a re-scan. Meanwhile, if anything significant occurs, go straight to hopital; otherwise take it more easy than you have been and I hope it abates.

Very best wishes

Richard

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#7

AT,

I’ll give you the short version…
Headaches - constant on left and forehead, pulsating on the right half of my head. Vary in intensity but they are non-stop. For 14 months so far.

Ears - 60% loss of hearing in left ear, 20% loss in right ear, pulsatile tinnitus (present in right ear before it’s about 3 times louder) and left ear sounds like the whine of a jet engine when you are sitting in front and the engine is behind you. Once again, all the time, just varies in loudness - often too loud for me to hear normal conversation.
Oh and extreme noise sensitivity - including sometimes when my own voice vibrates up through my skull.

Eyes - double vision, focusing issues, auditory processing disorder (not fully diagnosed yet but if it quacks like a duck…)

Numbness - left ear, left cheek and jaw, and down into throat, vocal chord, tongue and associated parts down the left side of my throat - causing speaking, swallowing, choking and coughing issues.

Phrenic nerve on left side is damaged so my left diaphragm only works at 50% power. So I’m basically operating on 1 1/2 longs.

Nerve damage, numbness and tremors down my left arm and hand. I always get my flu shot in my left arm because I never feel a thing. It’s not that it hurts less. I.don’t.feel.a.thing.

Oh and what my ears hear a and what my brain hears are different - so it appears we have an auditory processing disorder and we are inching through the process to get additional testing to see if there are any other processing disorders. I know that there are certain things that don’t work like the way they used to.

There, sorry to load it up at this time of night but you did ask for it…

That’s also why I’ll be here for a long time.

TJ

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#8

AT - another thought - anytime I do anything (except sleep or watch mindless tv) it raises my pain levels. Get shoes and coat on - headache goes up. Sometimes I will get delayed pain - family birthday party one night, headache the next day (I call it my hangover without a beer)

And the beat goes on…

TJ

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#9

There isn’t going to be another scan for some time so I would not know …Moreover the earlier follow up scan I had from the first embolization didn’t show the AVM until we did a brain angio !! So I think scans don’t always tel the truth. As for the eye pain I think I will go to an eye specialist. Ive ben having thoughts…do you think the ONYX glued up some of my nerves on the way ??
thanks

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#10

Dear TJ, thats wild !!! Im so sorry to hear that you are having and have had so much trouble…I would do a brain angio to see if it has really been closed fully or not. Some of our symptoms are similar - like the shoes and coat etc… also the echoing in the ears when i watch tv or listen to music…maybe you need to get another opinion ? take are bud !

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#11

Have these symptoms become any less over the past 14 months or so What do you do or exercise ? walking ? or does that give you pain as well.

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#12

AT, Thanks. I appreciate the support. It is wild - and blows the minds of everyone in the medical field as well.

One of them said I’m something like the 1% of the 1% of the 1%. That rare. And to think, it takes social security 8 months to deny me the first time and then we’re looking at another 12 to 15 months for the appeal. Apparently they think I can spend all day on the phone, on the computer and meeting with people. It makes my head hurt just thinking about it,

Second opinions - we haven’t gotten a second opinion on the treatment of the AVM because we’ve seen enough data afterwords to verify that what he did is what needed to be done. We have gotten second opinions re: the headaches, the ears, the throat, the voice… And many of the doctors we are working with now (and rehab therapists) are not the ones we saw first.

Am I able to notice progress? Absolutely. In March of last year, I could hardly get out of the recliner because any movement would send of sharp pains through my head. Now if I keep a calm, moderate, steady pace in very quiet places (I wish there were earplugs that filtered out everything except voices. I would love to have those. The earplugs I have for noisy situations filter out 25 decibels which is a huge help - but there are voices I’d like to hear that I can’t with them in. Most of my progress came in the first 6 months. Since then it has been progress I’ve “learned and earned” in training my brain to adjust to the differences. Mainly in two things - balance and pace.

I think I answered all of your questions - but that’s another thing that is a challenge. I’ll be on one website and switch to another one to put in data from the first one - and I forget already…

TJ

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#13

Do I think the onyx glued up some of your nerves? No. However, it could have glued up blood supply that something relies upon – there is always a danger with surgery or glue that the doc isolates a little bit that he or she didn’t mean to. But I think it is also possible that you’ve got a bit of swelling / disturbance going on because of the glue or the irritation of the catheter or the solvent from the glue. Your brain definitely gets upset from the foreign material injected and it doesn’t take just 3 or 4 weeks to settle down.

See how you go.

Very best wishes,

Richard

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#14

Im sorry to learn this and have been thinking about you and your troubles, Im sure with time they should get better. I agree that one might have to earn to adapt to things like pace and balance, though its tough because a lot of folks are fully cured. Thats is quite mean of the social security folks as well !! You deserve better !!

What baffles me the most is that all the docs here said that i would be fine in 2-4 weeks. Even though i met several docs after the procedures they all said that these symptoms were confusing and not related hence i am worried.

cheers !

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#15

Sir, you may be absolutely right - the onyx could either have glued up something or some part of the blood supply somewhere…but what do I do about this and how do I find out ? It would be very helpful…I know that the first embolization procedure the doc mentioned that a small tiny part of the catheter was left inside…but that was ok and sometimes it breaks off and there is no worry about that…could that be really true ?

If there is a swelling /disturbance going on because of the procedure, could there be a medication or something that can subside it ?

The second procedure doc did however confirm that the first onyx casing looked intact. Wonder if Im allergic to the onyx in any way ?

regards

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#16

I honestly think you’re worrying about it too much too soon.

I felt OK at 3 weeks to a month but no way back to normal. I had my embolisation at the beginning of April 2017, I had a check scan sometime in the May – about 6 or 7 weeks later – and I was pretty good, but I remember getting permission to drive in (late?) June. I did start driving again but I can tell you I was quite unsure and didn’t feel the slightest bit “normal”. Indeed, I spent at least a year to 18 months getting near to “normal”.

So, I really think you should relax as best you can, get better. If anything serious goes on, go straight to the emergency department but if you still have your concerns in a few weeks, reach out to your neurosurgeon or interventional radiologist. Indeed, tell them what is happening now but perhaps ask more strongly for a review in a month or two if you are still not feeling better. It sounds like you’ve already mentioned it to them and they are comfortable with what you describe, hence I suggest taking more time getting better before becoming more insistent.

The reality is that in order to do any surgery, etc. it has to be visible on a scan of one sort or another. If nothing can be seen, it is possible that there is something there but it has been missed, or that there is something there but it is so microscopic that it cannot be seen on any scan. As my doctor told me very plainly: if he can’t see it, he surely can’t operate on it.

I hope this helps. Sometimes worrying does you little favour.

Best wishes

Richard

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#17

This was me, just over 1 month post embolisation

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#18

Hi Atul,

I agree with the other writers here that maybe you are rushing your recovery. I had 2 embolizations in early 2017. The first one was with coils and I felt fine a week later. The second one was with onyx glue and the recovery was not so quick. I received a severe burn to my scalp and the doctor wasn’t sure if it was caused by some glue that may have made contact with the scalp or because the surgery was 7 hours long and exposed me to a lot of radiation. My scalp turned very bright red and within a month developed a large scab, which fell off about 3 months later along with a patch of hair which still hasn’t grown back. For what seemed like the longest time after my onyx procedure my head was extremely sore all over. I could barely lay on a pillow, nevermind get to sleep. This went on for months. It’s 2 years later and I finally can say the scalp pain has subsided greatly. I still have pain by my right temple (especially if I touch it), but I think that’s because they decided to drill a hole there and feed another catheter through from there to reach everything. I haven’t had problems with lifting things, but I do get dizzy and headaches when I bend over with my head below my heart. Best of luck with your healing. I would ask your doctor for a referral to an ophthalmologist if the eye pressure/pain keeps up.

Carol

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#19

Hi Carol,
Thanks for your feedback. I underatand that recovery takes time and Im ok with it. Have to accept it I guess we have no other options. Yes when I bend neck down the dizziness gets worse. Its the pain that happens immediately while I lift anything that is troubling my mind. I’m not sure why this is happening and therefore was wondering if anyone in the group has had this symptom of pain in the temples, top of head and behind the eyes when lifting anything even slightly heavy. The pain is almost right away and i think it could be due to some vessel being closed or something being damaged or a nerve problem in the area while the surgeon was performing maybe ?
Regards

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