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AVM Survivors Network

Third Stage - Degradation Post Embolisation?


#1

Hi guys

I thought I’d share a bit more… I seem to be into the third stage of my “AVM journey” :frowning: by which I mean to say that I’m starting to feel a bit poorly again.

First stage of my journey was diagnosis and waiting for treatment…

Second stage was getting a date for my embolisation, going through that and being allowed to drive again.

Stage three is that I have not felt, for the last few weeks, that I was getting better. On Monday, I finally cracked and went back to my General Practitioner (GP) to say “I think my head is feeling worse over time, not better”. I feel a bit pressured in the head, I can hear a clear pulse at night. Motion, in the car especially, is disturbing. He agreed to refer me back to neurosurgery for an outpatient assessment.

I can’t quite feel a pulse on the back of my head, as I could before my embolisation, but I do feel with my head on the pillow at night there is a bit of a pulse, a bit of head-lifting going on. The GP had a listen with his stethoscope but couldn’t hear anything untoward. Although, I think the effect is more in my neck than my skull this time and he was listening to my head.

As the week has progressed, I’ve become worse. I would say from some point on Wednesday I felt noticeably worse and I decided not to drive to work on Thursday. I’ve not driven since. I stayed off work on Fri morning to see if good food, a good lie-in, etc. would help me feel OK. I do work hard, so maybe I was burning the candle too much. No, I was just as funny in the head on Friday, and for that matter on Saturday and today. Darn, eh?

I’ve been having brief deafness from time to time, as well. Not sure if that is relevant.

So, I thought I’d share with you guys and see how I get on in my next set of appointments going back to see the various doctors and the interminable waiting it all brings… I’m slightly disappointed that I’ve managed to wait till the cold weather hits before needing to queue for a bus in the mornings! But then, I’ve never been lucky. If I buy an investment, it goes down; if I sell, it goes up.

I hope by sharing my next bit of the journey, it will help others one day. It also helps me keep a bit of a log.

Lots of love,

Richard


New And Lots of Questions re DAVF
All the AVM symptoms but no diagnosis yet
Introdution
#2

I hope you feel better Richard. Good luck with your appointments I hope you get some answers.


#3

I often feel like I am not getting better. My AVM is pretty much gone, but I still have the side effects from the brain bleed… fatigue, memory problems, and sometimes trouble processing. This month in fact will mark 11 years since my bleed.

Four years after the Gamma Knife, which I had in 2007, the doctors determined that I needed the Gamma Knife again. I had a couple angiograms first, but it was like being thrown back into my younger years. I was 10 when the bleed happened, and by the time I made it to high school, I thought that dealing with surgeries would be a part from my past… frail, “Little Julia” needed brain surgeries, but confident teenage Julia should have been done with them… and yet my second week of grade 11, I spent in the hospital and at home on bedrest. In my small town, most of my classmates had known me since before the bleed, and while even as I got older they saw me as a high-achieving student, I think it was a shock to them that I was still dealing with that single headache that had turned everything upside down all those years before. One student that I had only known for a few years even asked me to show him the screw holes under the band-aids on my forehead, which I did no problem. Now, I was never treated any differently by most students, but there will always be this “unspoken understanding” among everyone I know that while I look healthy, I am dealing with the effects of my AVM every day, and I will never forget it.

Thinking of you… Julia


#4

Thank you, ladies. I’m trying to do the right thing by not driving but I’m concerned I’m limiting myself so much and it’s likely to go on for months.

I’ve actually got a job interview for a job that’s posted in a different city, perhaps less than 20 miles away but getting there on a bus is 2 hours compared with 35-50 minutes in a car, depending on traffic. I applied several weeks ago and now the interview comes up just as I’m feeling disabled! The only thing to do is get through the interview and then see whether there’s a big issue. I want to be open & honest with them but i want them to judge me on my ability not my disability. It’s going to be interesting!

Julia, thanks for your post. I know my close friends get my condition, though I am sure they’ll be shocked that this thing can recur. I also know I am in such a mildly affected state from my AVM compared with so many people here that I am concerned I’m making too much fuss. The only real obstacle I have is the driving. I could put up with the slightly odd feeling head if it didn’t feel dangerous to drive. Normal doc has asked for a further conversation about driving so seeing her (& job interview) on Thu.

Thanks for being friends and offering support. It’s what we are about.

Richard


#5

Sorry to hear things are as they are and sure hope your appointments come together quickly. I know the waiting game and there’s a couple ways to seed it up, none of them good! You’ve been such a great support t me and many on here so know you have my complete support, thoughts and prayers for it to al come together. Knock 'em dead at the interview, honest and ethical people are in demand! Take Care, John.


#6

Thanks, John. You’re a great encourager yourself.

I’ve got myself prepped for the interview tomorrow and my GP is planning to call me, too. I just hope they don’t happen at exactly the same time! What are the chances?

I usually hate interviews. For the moment, I’m feeling comfortable, I think… Will let you know how things go. Could be far more than I should ever take on…:open_mouth: but I want to properly wow them.

Many thanks,

Richard


#7

Good luck in the interview,
And thank you for being a great support on this site, it has been a great help for me and I’m sure most of the people on here. Stay strong and take care
Sarah


#8

… so today has been a remarkable day.

  1. I think the interview went very well. I think there’s a danger I might be offered the job.
  2. My GP just rang and reminded me of the criteria for driving re dizziness, which is that we may not drive in the UK if you are liable to sudden and/or debilitating episodes of dizziness.

I can say that my dizziness is neither (yet) so she is comfortable that I can continue to drive.

That is so better an outcome than I expected today. If some of you were busy praying on my behalf, I might have to start to believe in the power of prayer!

Richard


#9

Any word on the interview Richard? John


#10

Not yet. Difficult to know if that’s a good thing or a bad thing. I guess it means I’m not a complete no-hoper!

If I do get the job, I’m going to feel really guilty. I’ve moved role within the team I’m currently in, as I’ve indicated to the boss I need to do something different. I’ve been doing essentially the same job for 6 years and a similar job for the last nearly 8 years. My boss, being a good egg, pointed out the job I’ve applied for.

Now, having got to the decision time, the lady who took over my immediately previous job has told the boss “I’m pregnant. I’ll be leaving by April”. And this week, another lady in the team announced she had resigned to take up a role with a car manufacturer… so if I go, that’ll be a good percentage of his team off!

… and then, the job I do drives me mad on some fronts and shows windows of interesting work on the other. As you might know, some of the more interesting stuff is just on the horizon…

So it’s going to be interesting. The roulette wheel is already spinning. The bets are laid!

Richard


#11

Holy, lots of moving parts! More waiting though…just for a different reason this time. I’m guessing it’;; work out well. Take Care, John


#12

Ok. So the roulette wheel stopped with the ball in “no”. I didn’t get the job but apparently the “presentation” section of the interview pretty much blew them away. So I’m really happy about that.

Equally, I was worried about the location move and how my health might change. Overall, I’m fine about the outcome. I should do some longer term preparation on my weak points so next time I just blow them away completely!

So… No big new adventure yet.

Strangely, I’ve been feeling a bit better this week. I can’t decide if I’m merely getting used to being a bit more dizzy but the more significant dizziness I felt that prompted me to stop driving for a week has gone away, I think.

I have to say my regular tinnitus is quite a noisy whistle… just like when you’ve been to a too-loud concert and come away into the quiet. Slight warbling / different sounds in right ear recently. And I’m convinced the tinnitus doesn’t sound in my dreams! Completely impossible to be sure but I am of the view that in a dream I had the other day, none of the “action” (whatever it was) was marred by whistling. Quite interesting.

I do lose sound on my right occasionally. Pressure in head feels OK at the moment. I do think I get a pulse that lifts my head off the pillow slightly, more in my neck than my head, and with my head at the wrong angle, I can hear my ear being moved against the pillow by a pulse somewhere.

Off to London on Sunday to meet up with Corrine, Lynster and some Facebook AVMers. Have a great weekend all!

Richard


#13

Sorry to hear about the job, things do or don’t happen for reason it seems. Have a greta time in London, I’d love to be at that table! The personal connection is always so great. Take Care, John


#14

Update…

Finally got a letter through, inviting me to an outpatients appointment to discuss my degradation of symptoms… It will be in March!

Remarkably, I had two or three days early this week when I felt really pretty good. So all is not going south. Maybe I am still just getting better slowly with some ups and downs.

I can still hear a good pulse somewhere; I’m quite sure there is a pulse I can feel on the back of my head, behind my left ear; and my head feels a bit odd when I’m driving (I think a motion-sickness kind of feeling) but rather less recently than in November.

So a March date is a heck of a long way away but I’m comfortable I can get there safely.

Hope everyone has a great Christmas!

Richard


#15

March will be here before you know it, and nice to make some headway. The exercise in patience never seems to end! Take Care, John.


#16

So… we’ve made it to March. How am I feeling?

To be honest, it’s a bit like going back to last year, before my embolisation. I’ve been getting gradually less well, I think, over the past few months. It is interesting to see what I recorded above as the basis of my concern at Christmas and it is pretty much the same…

  • tinnitus, which seems worse than I used to have pre-embo and seemed to step up in the summer. Not noticeably different since the summer. The occasional warbling noises I talked about before, as well.
  • pulsatile tinnitus, or at least a pulse or throb in my left ear. Correlates greatly with fullness in the ear which is predominant in the left ear but I would say if my blood pressure goes up, pressure appears in both ears. When driving, want to pop my ears to clear them. Recent days, popping my ears a lot of the time.
  • I’d say head pressure towards the top of my head, again predominantly left and the odd feeling when driving, sometimes when walking.
  • flushed expression. I look in the mirror like I’ve been in the sun and gone a tiny bit pink. Somebody complimented me today that I was “looking well” but I haven’t been out in the sun greatly so I wonder…
  • bit of a thick head. Not enough for me to describe as a headache but present and constant enough to be something.

As I sit here this evening, feeling a bit poorly, bit pressured in the head, bit borderline might stop driving.

Tomorrow, off to hospital with my son. He has a couple of things to look at on the back of his head, one of which is a birthmark, so want to get him checked out that it is as simple as a birthmark.

Thursday off to hospital for myself for an outpatient appointment. Does the doc think any or all of my symptoms above are a sign of a resumption in my AVM or another one sprung up on the left, or some anastomoses that have lain dormant pre embolisation have now opened with the right pressures now occurring in my head?

I always have to recognise that I think I am well off compared to some people here, so whilst my intent is always to share with others in case we have similar symptoms and can learn from each other, don’t want to come across as an empty vessel, making more noise that it’s worth. Difficult balance that I worry I don’t hit right.

Anyway, that’s my position this week. I’ll let you know how I get on. As a consultation, I’m not expecting miracles but one step along the way.

I did promise someone a few weeks ago to ask about something… can’t remember what. So if that was you and you remember my promise, give me a nudge. No real brain, you know. That’s my trouble :slight_smile:

Richard


DAVF embolization tomorrow at Cleveland Clinic
#17

It was @DanielleCollins. I’ll try to remember to ask explicitly about my head pressure / thick head.


#18

Hey Richard,

Thankyou for the update! I’ll be thinking of you and your son tomorrow and excited to exchange updates on our thursday appointments :smiley:

I’m sorry to hear that you feel your feeling much the same as pre-embo, but glad the specialists are finally making steps to figuring out whats happening. Glad that you’ve kept a close eye on how your feeling in yourself and kept your doc in the know.

Best of wishes and love,

Corrine


#19

I’m better than pre-embo, so I am convinced that doing the embo was the right thing to do. But I feel I’ve been going downhill Nov to Mar in much the same way that I was declining Nov to Mar last year. I’ve just been quiet about it in the meanwhile this year as I know better this time what the doctors get excited about and what they take as not urgent… least I think I do.

Swap notes on Thursday. As I say, I’m not expecting great revelations.


#20

Richard, I’ll be thinking of your son and you this week. Disappointing to hear about your symptoms persisting, it has to be frustrating. I can relate to the pulsatile tinnitus, I think mine is getting worse over time. I guess its good to know my heart rate but would prefer to determine that another way…Hopefully this week will be beneficial. Take Care, John