Hi
I am Reena , last time I spoke to anyone in this forum
was June’16. I been awaiting for nearly 6 months to get
my results back from charing Cross hospital. Anyway I got
my results in November and its been confirmed its not a AVM but Right Dural AV Fistula connection around the paracentral lobule and the proposed treatment plan is Endovascular Embolisation.
Been put on waiting list now.
Got a call Friday the 13th January I have to go in on the 1st Feburary and the treatment to be done on the 2nd February.
I been keeping myself busy, but I get panic attacks when I am scared or stressed. I been told I am not allowed to take anything to help with the panic attacks.
Advice how to get through this much appreciated
Thanks x
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Hi Reena, its not fair that you cannot have meds to help. But you start thinking right now that you WILL be FINE, Because you will be 
, This mind set will help loads for the procedure and any recover if needed. Good luck and hope it goes well , Take care
Martin.
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Thanks Martin for your support.
Hey Reena,
I’m doing a similar thing. My AVM is described by my interventional radiologist as a dural fistula in my right occipital, reaching round past my right ear. It is giving me pressure in my head and dizziness.
I had a first confirmation in Aug, MRI Sep and neurovascular/interventional radiologist diagnosis in Nov. Now waiting for my appointment for a catheter embolisation in March.
But it’s a good thing. I’ve got a catheter embolisation procedure down as relatively straightforward compared with some options, and the plan is that it gives us a risk profile more like every day non-AVM people.
It makes perfect sense to be apprehensive and keeping going with normal things / keeping busy is a good plan. There are lots of people here who have been through an embo, so we should take some heart from that.
I’ll be following you all the way! Best wishes,
Richard
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Hi Richard
Thanks Richard, it really helps to talk .
take care
Reena
My dad and his wife have spent years, first one, then the other having challenges – poor health often, of one kind or another. But their marriage makes them strong. They lean upon each other and make it through.
It’s a great thing to have friends to lean on. You might lean on us a little at the moment but I’ll need to lean on others, soon. It is what this community is best at.
We’ll lean together. We’ll not fall down.
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My son had a small avm is 27 and scared too had bad panic attacks and anxiety just hang in there in there OK just keep busy try actupuncture if possible really good for stress and anxiety doesn’t hurt but I use it for my own anxiety stressful time and theore u go it helps check about low income places if u can’t afford a regular Dr we have one where I live it’s GREAT
Hi Reena!
I’m Nina, and i saw your post and had to reply. I have the same condition as you but on the left side. Also weirdly i am having my second embolization on Feb 2nd too! Ive been dealing with this since October 2015 and i just wanted to say good luck to you, and that i hope the fistula can be resolved for both of us after the 2nd so we will never have to think about it again!
Feel free to contact me if you need to because i’m sure i can relate!
Best wishes!
Hello Nina
Thank you so much and I wish you all the best too.
After 4 years of monitoring things have changed for me now.
just about got through the angiogram. Got the confirmation letter from hospital yesterday to go in 1st February 2 p.m and Embolisation on the 2nd of February. As it getting closer to the date for my Embolisation my panic attacks are getting worse
Drinking camomile tea to help me relax.
Are you based in UK? How did your 1st embolization go.
I hope you don’t mind me asking why they doing another one.
Good luck and all the best
Reena
Hi Poodlepamm
thank you I might look into acupuncture.
Best wishes
Reena
Hi!
Yes i am based in the UK. I’m being treated at Kings college hospital.
When i was first diagnosed i was having panic attacks too! The heart rate moniter was going crazy when i had my first angiogram. But it’s something i’m used to now. My panic attacks just faded with time. There is no magic cure i can tell you. I just came to accept my situation, because worrying made me exhausted. It’s always in the back of my mind of course, but that’s where it stays because no matter what, life goes on. So honestly time and just learning to accept my situation was all that helped. It took me a long time to get to this point i wont lie. But all i can say is you’re not alone! And i hope i’m evidence that the panic attacks do get better!
My embolization went fine. There was a strange feeling in the back of my head after. But that’s all. Unfortunately i got another fistula, but that’s very rare ive been told by my surgeon, so don’t fret! I’m sure you will only go through it once as most people do.
Fingers crossed this is my last surgery!
Nina, Thanks for helping with your great replies on this post , What I can say as a fellow UK AVM’er is that the if you have panics about Angiograms the doc will prescribe small amounts of meds that will help, I had a bad experience during one angio and this was noted in my files so the next one I was given a very small dose of meds to make me a little calmer, I’m not sure if it worked but I just relaxed and let them do what needed to be done . Thanks again
Martin
Hi Nina
How’s it going? and thanks for the information. My angiogram
the night before my GP prescript diazepam to help with relax and sleep. on the day of my angiogram my blood pressure went sky high twice they wont give me anything waited for me to settle
and eventually it settled I just lay there praying to God. I got through.
I been told I have to stay the night before the embolization treatment.
what sort of things should I take with me
I have never stayed in hospitals before.
I hope the Doctors will give me something to help me to relax and sleep the night.
Did the hospital give you anything to relax?
so many questions going through my head I hope you don’t mind me asking all this questions.
Take care
Reena
Hi Reena, I’m sorry about your situation. Positive thoughts and prayers being sent your way. All I can think is being positive really. Before my AVM embolization/surgery, I would read a lot of books based on positivity, because I was going through a rough patch when I was diagnosed. I also was around my family and friends more often, because they would comfort me in my OMG I’M STRESSED-panic moments. I also am a huge dog lover and am owned by a lovely Labrador who takes me on walks
Hope all goes well, wishing you the best, take care.
-Ruby
Guys,
I’ve had a message from @Reena yesterday that she meant to go to everyone… good news:
Hi all
update… my embolisation went well on Thursday . It took 4 and half hours using onyx.
Out of icu yesterday in normal ward now. Got low BP .hopefully will be going home tomorrow.
Thank you for all your prayers
Reena xx
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