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AVM Survivors Network

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#1

Hello Dear friends, I am atul and live in New Delhi. I was diagnosed with a Dural AV fitsula 2 months ago and finally had it embolized June 6th. Got out of hosiptal on the 9th and been home since. This came as a rude shock to me and I feel like life has come to a stop suddenly.
It is going to be 2 weeks tomorrow and i still feel dizzy. I have started walking on the treadmill for 15 minutes a day slowly but don’t have the strength to do anything else. My doctr says thatthe procedure went well and i have to have an MRI/MRA done ina 2 weeks to confirm if the blood flow is ok. The procedure took 7 hours and was very long I was under general anesthesia.

Can anyone advise me as to how long is the dizziness going to last ? What are the other side effects ? Will I be normal again ? I have been losing hair in the back of my head and the doctor says this is because of the long procedure.
thanks

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#2

I had radiation and embolizations. I had a good bit of dizziness in the beginning and about a 1 inch patch of hair came out. I had 3 treatments and hair came out all 3 times about 2 weeks after the procedures. I am thinking maybe the dizziness may be from the blood flow having to adjust to new pathways. Just my opinion. I would suggest you touch base with your doctor to get their professional opinion. I had started on seizure medicines at the time too, so may have been a combination for me. Are you taking any type of seizure medication?

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#3

Atul,

I think it does take a long time to calm down. The idea of glue seems really low-impact but actually, it can still take a long time to settle down. The following post is after my operation, and you can see over the subsequent weeks how I felt. I had my operation at the beginning of April last year.

My Update - Dural AVF Embolisation

It is fair to say that it has taken me over a year to feel 99%. I am still going through some checks to make sure everything is alright – I have a full head scan this coming Saturday – but if I am honest with you, I’ve started to feel pretty much back to normal since the last couple of months.

So, patience, I think. You should get much better.

Very best wishes,

Richard

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#4

Hi Melissa thanks for your response I am glad to be in this group. Maybe you are right dizziness may be from the blood flow. I did ask my doctor but he thinks I am depressed. Im told to have an mri again to feel satisfied myself but I know for sure I am dizzy.
Im not taking any medication at the moment. Only for after a week of my embolization i was taking blood thinner injections daily and some oral steroids daily. I was told by the doc 2 days ago to take biotin for the hair fl and that it was going to happen to me because i had a very long procedure of 7.5 hours. The dizziness has improved a it but its still there. Im not very confident of driving my car at the moment. I would feel more confident after hearing all the patients reviews and feed back on this group because its actually you all who have gone through this.

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#5

Hi Richard, very encouraging thank you. Im so glad for you and wish you all the very best and a complete recovery. Its been 2 weeks for me…i cant wait to get back to normal life…i want to ride my motorcycle again !! This came as a rude shock to me and i still cant believe this happened. The headaches are not too bad but its the dizziness and the “non confidence” of doing things on my own ( like driving, going out to work, etc etc) that i am worried about.

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#6

I know exactly what you mean.

In the UK, you would not be allowed to drive in this period after an embolization. I think being allowed to drive after a DAVF embolization is dependent upon the doctor’s advice. I don’t know what rules about stopping driving are in India but I would recommend you find out and meanwhile, do not drive.

My doctor was happy for me to drive after my check angiogram which was about 7 weeks post op. I had to go through other checks and was allowed to drive about 2.5 months after the op.

My own experience is that full recovery – feeling back to normal – is remarkably long. And today, I’m feeling less well than my enthusiastic 99% yesterday. Dizziness seems to me to be a common characteristic after a DAVF embolization. Whether it indicates further medical work to do, I don’t know.

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#7

Atul…I am a 60+ female and I also had a dural avm fistual (it bled) embolized with coils in 2016. I too had injectable blood thinners for a month after. The surgery was a great success, both my neurosurgeon and I agree. Two years later the dizziness has started and has lasted for 6 months while I go through the usual tests and opinionated drs. My neuro did an angio when it first started thinking the coils had slipped or a new fistula but all was ok. Now back to the neuro and, after discussions with his neuroradiology team, has recommended a stent be placed in the left side vessel. Apparently the veins on the right side have remained abnormally large and blood flow pressure continues to increase and a stent will allow the blood to flow more easily, relieving pressure. Not 100% guarantee it will work but no other options. Living with this severe dizziness is not an option. I feel like a ticking time bomb. I am scheduled for this procedure in mid July. Actually I’m scared spitless! So it seems this is never over…

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#8

Jenny,

Very interested to know how you get on. Hoping the very best for you. Any idea which vessel is an issue for you? My neuro is quite adamant there is nothing wrong with me and I rather feel arrogant enough to know he is right.

Best wishes

Richard

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#9

I feel so fortunate that I have one of the best neurosurgeons in North America on my side. I don’t question his opinion or recommendations. I can’t remember which vessel is being stented although I’m sure he told me. The last scan read “I do note the persistent appearance of multiple enhancing supernumerary/enlarged posterior vascular structures and veins in the posterior upper cervical spine on the right side. These appear to relate to the previously diagnosed and treated vascular malformation. There is a prominent occipital draining vein communication with jugular bulb and increased venous structures in the upper cervical segments.” Like a foreign language to me. Apparently my neuro speaks this language though! I’ll let you know how it turns out.

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#10

Sounds kinda like the same part of the brain as me, maybe lower down… more cerebellum and upper spine region where mine was occipital with no mention of the spine. Thanks for sharing!

I’d say my dizziness has gone, really. I get weird feelings, more top of head, and can still hear a pulse. I’m just not worrying about it.

Let us know how you get on. If I get anything out of my scans I’ll let you guys know, too.

Lots of love,

Richard

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#11

I wont be driving for at least 4 weeks for sure. That would be risking it I think. When you say full recovery - feeling back to normal- what do you mean…physically or mentally ?

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#12

Hi jenny, I hope and pray that you feel better soon and bounce back to better than normal. I think this takes time and maybe its also mentally in our heads…just the thought…that something wrong was happening with us…i had onyx and no coiling so don’t know what the physical difference would be…best wishes !

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#13

Physically. The dizziness, getting used to the different pressures in my head took a lot longer than I ever thought.

I could drive after a couple of months but it was a challenge going long distances. By 6 months, I was comfortable with the driving, except I had a week when I went very dizzy again, which put me off.

In terms of mental health, I think that is more up to you and how comfortable you are with what’s happened and your enthusiasm and strength in just getting on with life.

I’m sure both will be very variable, depending on you and your AVM.

Very best wishes

Richard

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#14

It’s your brain not a twisted ankle, everyone my AVM ruptured or I have had a procedure for it, I’m out of commission recovering for 4 months. Let your brain heal.

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#15

I agree , but can’t believe life is taking a turn…how long is my worry !

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#16

How long did the dizziness take Richard ? Im feeling very tired most of the day and depleted energy…maybe the long procedure of 7.5 hours under general anaesthesia ?

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#17

Atul

The extreme loss of energy can be caused by your operation. A good proportion of people who have an embolization or gamma knife report a loss of energy. I don’t remember how long that takes to clear or how variable it is. I think some people can suffer from it for a long time. I hope yours is more temporary.

Like Joe says above, a brain assault, whether by surgery or embolization is a big thing. Think in terms of months before you feel better, not days or weeks.

The other tips I’ve seen include:

  • Make sure you’re staying well hydrated.
  • Go to bed early and get proper recuperative rest. Trying to just carry on as before is overdoing it.

As for my dizziness, my head felt quite dizzy afterwards. See the link I included in my post last week. It faded away rather than just clearing up. It became more of an odd feeling in my head – when walking or driving, it felt a bit unsuitable for driving – but my doctor gave me some rules regarding driving as to whether I needed to stop and my consultant encouraged me that recovery takes a long time. He didn’t say how long!

I had a recurrence of more significant dizziness in November but it passed in a week.

Today, I’d say I’m not dizzy. I fell pretty good – I said 99% the other day – but I do have less good days. I think if your operation is significant, it can take a long time to be back close to 100%. And 99% is very, very good. Much better than some.

Hope this helps,

Richard

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#18

you are probably right. need to get a lot of hydration and yes have to explain to self that things can take time…how much time is the key thing…is there anyone in this group that is back 100% normal after an embolization ? will it ever happen ?

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#19

I’m sure there are some great successes. I’m thinking just now about @Reena. Reena, how are you getting on, about 18 months after your embo?

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#20

Hello Richard
I am doing OK …thank you. My two teenage kids keeping me very busy. I am going on the 9th July for my angiogram after a year of my embolisation. Feeling nervous past few weeks keep hearing whooshing sound . Hopefully it’s nothing.

DVLA just returned my license back to me . Even though my neurosurgeon gave the all clear.

Do you need to inform DVLA every time you have a angiogram.

All the best to everyone

Reena x

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