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AVM Survivors Network

Newbie with a DAVF


#21

Scott

Thankyou lots! I’m glad that this has put things in life into perspective. Once your all treated, you’ll move on with life and this new look at the world will stay with you - will never take life for granted. As much as no one would sign up to have an AVM, I think we are gifted in a way, so many people waste their whole lives coasting and not really appreciating life where as we will never do that.

Thankyou! I’m feeling pretty chilled for the angio just hoping that I’ll be low risk for my final treatment/s :crossed_fingers:

Hmm that is odd, hopefully a false alarm or if it’s epileptic I’m sure they will be able to control it with antiseizure meds. If Lamotrigine is an option that would work - I would recommend asking them about it. I have no side effects with it and my medic friend (who also has an AVM) also recommended it to me and uses it without side effects - though I know everyone is differant / reacts differently.

I will be thinking of you on thursday, please do let us know how you get on!

Corrine


#22

Scott,
A couple of decades ago, I got my large AVM fixed pretty FAB by the neurosurgeon Dr Robert Spetzler, Phoenix, Arizona at Barrowlogical Neuro Institution. I hope he is still doing miracles there! Good luck, and may
God be with YOU!
Lisa A. Stuckel


#23

Hi all,

To update, I had the embolisation on Wednesday morning and just arrived home after a couple of nights in hospital.

Procedure was a little more complex than originally thought, they went in through both groins and embolised the fistula through two arteries with the procedure taking just a little over 3hours.

Apart from a sore head and a little bit of light headedness / dizziness I feel pretty good. They are reasonably confident they fully occluded it but plan is to have a follow up MRI and perhaps angiogram in 3-6months.

After I woke up my vision was not great (peripheral blurred and lots of visuals) but it returned to normal 4 or 5 hours after the procedure and Dr is pretty sure it’s because they used a lot of contrast during the procedure as opposed to anything longer lasting.


#24

Scott,

It’s great to hear from you and know it went well. Well done!

I think I might have mentioned but I had some visuals (i.e. aura) for about 3 weeks or so after my embolization but they faded after that. I got another brief set of aura after the repeat angiogram, so I’d agree that it is likely to do with the contrast.

Glad you’re doing so well. Keep it up!

I’d say be sensible about what you take on for a while, keep well hydrated, rest properly and consider that you’ve had a bigger op than it feels. Don’t rush out and rejoin life too too quickly, though it is also excellent to mentally rejoin life and put all that worry behind you.

Let us know how you get on.

Very best wishes,

Richard


#25

Thanks Richard! Been sleeping a lot, and still finding that I need the paracetamol for headaches (small price to pay!).

Only other concern I suppose is how long I take Keppra for, my neurologist was certain that my only seizure was because of the fistula and I’ve been taking it for a few weeks so far. They want me to keep it up for a year before doing another EEG and then see how we go after that. Suppose it makes sense to play it safe for now at least.

I’ll also follow up with an MRI in 3 months and maybe Angiogram in 6 to make sure all is still well.


#26

As you’ve seen from the auras, your brain is a bit upset at the moment. You’ve got contrast material plus the solvent from the glue all going on (tastes a bit bleh, doesn’t it!) so I would stick to the Keppra while you’re getting better. I think you said before that the docs were keeping you in it for a year, which my be a fine idea.

Do you drive? I assume you’ve had to stop & advise DVLA. If you don’t drive (or don’t need to, being in London) then there’s no pressure but if you do drive, you may want to talk to the doc about when to come off / whether it affects your ability or permission to drive, etc. Since you’ve had a seizure already, DVLA may want you 12m clear of any seizure before re-granting your licence.

My car rotted away a bit while I was not driving, so if you do have a car, considering getting it regularly moving (by someone else) is worthwhile or keep in a garage. I think it was the brakes and the aircon that copped it on mine.

It’s good to know you’re doing well. Paracetamol was my friend for a couple of weeks, I think, maybe 3 weeks.

Very best wishes,

Richard


#27

Keira,

Not completely forgotten about you… How are you doing?

Best wishes

Richard


#28

Yeah, hopefully won’t be too many more auras. Ones I had when I first woke after the procedure were pretty strong (jagged rainbow coloured lines and blurred practically blind peripheral vision with flashing coloured dots). My Dr was surprised I was alarmed at all as I had an angiogram before and assumed I had same affects but I didn’t have anything like that last time (few white dots and a hot flush was all).

Aura brought back memory of my seizure as I had coloured flashing blobs just prior, which I guess is my visual aura from the occipital lobe. Dr only used 1.5ml of Onyx (not sure relatively whether that’s a lot or not) but did mention that my fistula had a significant number of draining veins and was fed by multiple arteries - so a lot of change in blood flow to get used to I suppose!

I’m finding a few paracetamol a day is tiding me over at the moment, pain seems to be at its worst if I move my head downwards so trying to keep upright as much as possible. It’s early days though I think I’m marginally better today than yesterday (not as dizzy) and as long as there’s some sign of improvement I’m happy.

Thankfully I’ve not had a car or drove for a couple of years, being in London I’ve not found it necessary. Hugely beneficial with a condition like this, I’m very lucky in that regard!


#29

I had auras for years, preceding migraines, but they stopped almost completely after a PFO closure (perhaps coincidentally). I had two post-onset for pulsatile tinnitus, and have also had a few since my embolization Aug 21/2018. I didn’t learn how I could control my migraines till I was 22, and didn’t have to go through a full one again. The auras were always my warning to take action back then, but they were troubling; they would make a portion of my vision disappear, typically about where I needed to put my hands.


#30

Hi all,

How nice of you Richard to remember me. Im not doing to great still having all the same symptoms and still no letter in the post for my angiogram. Im having a aura and chronic pain right now, but learning to live with it!
Iv made a few decisions the last month, iv taken a year out from university as the stress causes my symptoms to worsen, which has made me really upset, I hope and pray I get some sort of treatment so that I can return next September.
I feel as if they don’t care until something serious happens.
I would drink up to 2-3 coffees a day but I used your advice and don’t drink coffee at all, I very rarely drink alcohol and havent had any since your advice, however I have a family christening end of October 1 or 2 won’t harm right??

how is everyone? any one had any treatments lately?

hope to hear from you soon
Keira xx


#31

Hey,

It’s good to hear from you.

I’d say I’m doing ok. I’ve got something like vertigo going on a bit. Otherwise I’m fine.

I think it’s a good idea to reconsider what you’re doing, so well done for being so sensible about uni. I have to say that my feeling of neurosurgery is exactly like yours: they’re not really interested until you’re lying on the floor already. However, I found my GP to be quite shocked by how I was regressing and she obviously said something appropriately worried to my neuro interventional radiologist that I got to the front of the queue at the point at which we started to worry a bit more. So use your GP as your advocate if you’re worried and not making progress with hospital.

Well done on all points!

Look after yourself!

Richard


#32

Hi,

Glad to hear that your doing okay, your vertigo how does that come on?? iv had a few episodes and there is no warning signs this wave of dizziness just hits me and I need to hold onto something. It happened to me once while packing shopping at the super market.

I didn’t make the decision lightly and was very upset not having to return as iv been having such an amazing journey and love what iv been doing. But health is more important! I will return back to university next September hoping that something has been done to return in a better state.

Im going to the Doctors again tomorrow because this last week my symptoms are really bad again, the last time I went I was given a nerve painkiller amitriptyline, any body else been given this to help with symptoms??

Keira


#33

Keira

I’ve no idea. Im used to a bit of dizziness but I got out of bed about 3 weeks ago and my balance was affected. First time ever. GP decided its benign paroxymal positional vertigo because it happened when I had my head at a specific angle. But I think it has led on to more of the dizziness rather than necessarily being a balance thing that has stuck to its original parameters. I might need to go back to him to discuss. He didn’t relate it to my AVM but things like vertigo or Meniere’s like symptoms seem very common in the DAVF community to me.

Good luck with the doc today!

Richard


#34

Hi Keira,

Have you, if it’s a possibility, considered going private? I’m a big fan of the NHS and it’s great when you need emergency care, though it’s under resourced and funded so preventative treatment it’s not so great for. Costs aren’t that high (relative of course) for scans/consultations etc so it may be an option to speed things up.

I’m back to work today (2weeks since embolisation) feeling a bit nervous but I’m also feeling good. Headaches pretty much gone, puncture sites fine apart from a little achey and I feel perhaps a tad unsteady/dizzy (could also just be a little bit of anxiety though).

Either way, don’t be afraid to push your Dr a little today. Use them to push you up the list for the angiogram as Richard recommended.


#35

Hi Keira,

I am sorry you have had to take a year out of university, I can relate to your situation. During my fourth year of university my symptoms got considerably worse and my health declined at a fast rate (had a really aggressive AVM). I had not been diagnosed yet but my migraines and concentration got so bad I decided to refuse to take my summer exams in april-may 2017.

I got diagnosed during exam season and decided to take a year out for treatment. Best decision I could have made! The stress of trying to focus on studies was overwhelming with the symptoms already too much to cope with.

I am considerably happier in myself both physically and emotionally since my year out. I am listening to my body instead of over-exerting myself. The year out was certainly not wasted, it gave me time for self-development - I have grown and become a much stronger person. I value my time and life in general alot more.

As for careers wise, no company I have talked to has responded negatively to me having taken time out or my disability (resulting from my AVM). Certainly nothing to worry about in that regard.

It is awful having to wait to be seen! Hope you hear back very soon! For now I would say try to take it easy, enjoy time with your kids and have plenty of TLC.

It easier said than done but try to avoid thinking what could potentially happen “don’t worry until there is something that happens to worry about”. For example I spent so much time worrying about the potential of vision loss. It actually happened and I regret having wasted so much time worrying when I wish I had lived in the moment instead - it wasn’t as horrible as I imagined. When we imagine scenarios we underestimate how strong and adaptable we are.

I definently agree with @DickD and @howoriginal : using your GP doctor to help put pressure on tbe hospital to get seen sooner is also what I’d recommend.

Best wishes,

Corrine


#36

Keira,

I tried amitrytaline but it didn’t help me personally not everyone is differant! Let us know how you get on with it :raised_hands:

Corrine


#37

Hi @howoriginal,

I am really happy to hear you have recovered well since your embolisation! I can imagine the dizziness could be your head adjusting to the new blood flow now the AVM is gone! It is wonderful to hear that they believe your AVM has been fully treated - that is amazing :heart_eyes: :crossed_fingers:

Your puncture sites should feel lots better soon but is quite achy initially for sure. Everything is sounding really positive :smile:

Best wishes,

Corrine


#38

Hi All,
corrine, @howoriginal, DickD thank you so much for your replys. Makes everything your going through much easier when you know your not alone, I’m glad I found this site it can be truly inspirational. corrine I am still disappointed about missing time from University, but I know the stress would just make me worse, and I’m actually doing what you said, I’m using this time to better myself! I have found myself over worrying which is getting me down and making me feel worse, so I have started getting fit eating healthy and meditation, spending heaps of time with the children when I’m not in work.

My trip to the Doctors didn’t go to well, I had a very rude obnoxious doctor and when I was telling her things, she was rolling her eyes and at the end of the appointment she said I feel your frustration, which I did not believe. I came away with amitrytaline, its okay but not great still have severe migraines and pain in. my head, but know what works for me now.

@howoriginal I didn’t know you were having a embolisation, hope you are feeling good now? did you have any symptoms afterwords? and also I wouldn’t be able to afford private, I would have otherwise, I just want to be sorted as we all do, and to feel normal.

Lovely hearing from you all and your stories

Keira


#39

Thank you @corrine! Have you heard anything after your angiogram yet on possibility of Gamma? How are you getting on generally?

I’ve been back at work for a little while now and I’m super lucky. My headaches have subsided (I find if I push it to beyond a 12hour day my head is a bit achey but I suppose it’s no bad thing for me to cut down the hours a little!) and I don’t feel dizzy. I spoke to my Neuroradiologist today who wants to bring the follow up MRI forward and do it ASAP so hoping that is all clear as well as I feel good.

@kjjames118 sorry to hear about your experience with the Dr, keep pushing them and don’t ever feel like you’re being a nuisance. Really hope you start to see some progress, any news on your angiogram date? Thanks! After my embolisation I had some vision issues but they only lasted a few hours (swelling combined with contrast dye I think). Just over a week of headaches after that (manageable with paracetamol) and nothing else really. I think I’m very lucky that the embolisation seemed to go well, I just need to have follow up scans to confirm all is well now.


#40

HI I went in twice last year for embolizations at queens in Romford with davf, was fantastic. Had a couple of weeks off and was fine. unfortunately there is one bit that cant be reached, and requires a craniotomy,im under MR V ,the neuro surgeon, ive just learnt on here about caffeine, so will try to knock it off!!