Another DAVF?

Hello Everyone,
Sorry haven’t been In touch for awhile. After my first Embolisation, I had hearing issues and also found out I am prediabetic. Been busy trying to keep sugar level and weight under Control .

All was going well, until I had a fall in the first lock down. (May)The lock down made it impossible for me to see GP
Has my balance issues weren’t going away. My GP refered me back to my Nuero Surgeon in Charing Cross hospital.
October I got a call from my Neuro Surgeon, who then arrange for a Mri and Mra scan.

March 2021 had my scans done, June consultant rang to say they are arranging a angiogram to be done in 3 months time.

Possibly another fistulation?? September 8th I’m going in for my angiogram.

Just needed to talk . Thank you Reena

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Reena

Great to hear from you! I know you had your embo just before I had mine. I was very encouraged by how you got on.

I hope you get somewhere with the neuro… and not too long to wait now.

Lots of love to you. I hope you get on well with your appointments,

Richard

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All this COVId stuff really bites for so many people - at least here at Barrow, they seem full force - i hemorrhaged during the worst of it & they handled it so professionally

But, from what I am hearing the only reason why I get this special treatment is due to being a stroke patient - what a win < sorta

Good luck to you & us all :pray:

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I haven’t followed your status, so I can’t make detailed comments.

I had an embolization of a marginal + sigmoid sinus dAVF at UCSF on Aug 21, 2018. The surgery went awry and most of the OR time was spent in repairing a new tear, caused by the withdrawal of the catheter, so I had terrible balance and excruciating headaches for about 10 days after the op.

I did what are called “vestibular exercises” to help get my balance back, and was again climbing cliffs 24 days after the operation.

However, I continued to have occasional vertigo. At the end of that October, I was on a hike when I suddenly got expressive aphasia for about 1 hour. I e-mailed UCSF that night, and they asked me to come in for an angiogram in early November 2018; they were fairly sure I must have leaked around the embolization.

Long story short: they found no new dAVF. These surgeons tend toward caution.

I still have sequelae, which I’ve learned to accommodate-- occasional poor balance and scintillating scotomas, loss of some peripheral vision on side of operation and the iatrogenic dAVF.

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Hello Reena
These lock downs are so bad and I am so sorry to hear that you are having balance issues.
I am glad they are being thorough and following up with an angiogram -
Please let us know how it goes and I will be keeping positive thoughts
Hugs
Angela

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Thank you everyone for your kind words and wishes. Lots been happening since I spoke to you all.
Nhs test and trace ping me , saying I been in contact with someone who tested positive. I don’t need to self isolate as I’m doubled jabbed, but to get a PCR test done. Thank God test was negative.
The following day I was down with tummy bug and sickness, just 're covered from it last week. :pray::pray:
Yesterday had my blood test/ covid test all done , if all ok
Angiogram will go ahead on Wednesday the 8th September…

Normally when you go in , you also get to speak to the doctor. I wanted ask about the report they sent, and what it means.
Suggestive of some arterialised flow within the anterior superior sagittal sinsus, which maybe suggestive of some ongoing fistulation.

Nerves are kicking in now, going to keep myself very busy and also been told got to self isolate. :pray::pray:

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@Reena

Good to hear from you. An exciting week or two! :grimacing: :grimacing: I got pinged in the week just prior to the change in rules on double jabbed people not needing to isolate, so was obliged to isolate, and back in November had to have a biopsy to rule out cancer somewhere, so I’ve been through similar preparations as you. I spent something like 3 or 4 days pre procedure in isolation and at least 2 weeks post procedure in isolation! (Hopefully you won’t be required to isolate afterwards).

So long as you’re keeping yourself occupied, I think that’s good. And I think keep your MIND occupied is the main thing.

How are you thinking? Do you want them to find something that could then be embolised? It would you rather them find nothing? I know that when I didn’t feel fully fixed post embolisation no 1 I was happier with the idea of “a little something” that needed doing that would just set me right.

Will be thinking about you this week. Are you managing to isolate outside in the amazing weather or are you shut in and missing it?

Lots of love,

Richard

Hope you’re having a good day today!

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Hello Richard,
So sorry didn’t reply yesterday, was all over the place.
Anyways all went well, this time they did it through my wrist.
So all ok, I’m good to go home .
Thank you Reena :pray: :kissing_heart:

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That’s awesome!

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Awesome is the word!

Anything seen on angiogram or not discussed the angiogram with you yet?

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According to the radiologist, all looks good. No new fistula.
He said have to sent report to my Neuro Surgeon and they will confirm everything.
Thank you for Checking up on us.

Lots of love
Reena

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Sounds good.

If it helps, my head felt very weird for at least a year to a year and a half after my embolisation and I got checked out but the overriding message was “there’s nothing there to see. If there is anything there (and the brain is very sensitive to disruption) then it’s so small as to be invisible. And if it’s too small to see, it’s definitely too small to do anything with”.

Good to get checked out, though. Hopefully you can relax again :heart:

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