Intoduction, Sharing and Caring

General
1

Hi Everyone

Apologies in advance for the long thesis that follows!

I’ve recently joined the network but have been loitering around the site for a while and I’m ready to speak about everything thanks to another member (xSarahx) who posted something similar. I’ve just passed my 8 month anniversary of my third surgery and have had trouble accepting everything for what it is. I think before I was too scared to speak out about it all - In my head I just thought; ‘It’s out! Let’s move on with life!’ I wanted to put it all behind me and get back to how things were before this all started, something I’m sure many of you can relate to.

A little bit about me before I raise my questions. I was diagnosed in October 2017 in Hong Kong after experiencing what felt like the inside of my head on fire. I took a cab to A&E where I told them that a few weeks before I had got hit on the head by a car park barrier (which didn’t seem to hurt at the time so I didn’t get it checked out). They then gave me a CT scan which revealed a bleed on the brain. Later after an MRI scan I was diagnosed with a cavernoma in the right temporal lobe (just above my ear) and was sent home with the doctors saying ‘no big deal’. After a few follow ups I was offered the option of surgery which I opted for in July 2018. A week after the surgery I was at home and the right side of my head had blown up and I ended up looking like Sloth from The Goonies movie. Turns out I got an infection so they had to open me up again and clean it all out and was on antibiotics through a catheter for a month.
After a few months and some more MRI scans and an angiogram, it turns out that the doctors misdiagnosed my cavernoma - turns out it was an AVM and also, part of the AVM was still in there. An AVF had also formed in this time. This is when I decided to return to London to have the next procedure done privately - which was in February! The surgeon was brilliant, took out the AVM and the AVF and here I am writing on this board.

Now to the recovery!
8 months on and I’m aware it’s still early days but I find that if I strain myself the slightest bit (for example, even fast walking) I find that my head becomes foggy, my mood will shift severely and usually become very depressed. There are good days and bad. There have been a few occasions due to stress, lack of sleep and overdoing it physically that I have had a few focal seizures thow me into a state of paranoia and fear that I won’t be able to shake off for about 1-2 weeks. Funnily enough I used to experience these focal seizures from my late teens but only sparsely (sometimes i would go for years without having them) - but I didn’t realise they were focal seizures until I was diagnosed with the AVM and explained to the doctors what these feelings were (this whole time I thought they were just panic attacks).The best way I can describe it is: Imagine a cold large egg has been cracked opened at the top of your head and it just trickles down you,followed by an immediate fear for your life along with paranoia and a detachment from everyone and everything around you.

Before I discovered I had an AVM I was quite an active person. Since the surgery I am tired easily with mood swings and to top it all off I have put on quite a bit of weight that I can’t seem to shift!

Throughout the recovery period I have slowly been changing lifestyle habits which seem to have helped (No caffeine, alcohol or strenuous activity). My surgeon says that all the symptoms should all die down over time albeit a long time. I’ll openly admit initially that I have been very impatient during my recovery (something I’m sure many of you have experienced) and pushed my limits where I know I shouldn’t have. I am still fearful that these symptoms will never go away and am still slowly trying to accept this possibility.

I’ve wanted to share my experience for a long time, I’ve just been too scared to to be honest, as silly as it sounds. I’ve been wanting to reach out and see if anyone has had similar experiences; how long their recoveries have taken or are taking and how they have coped with the side effects, if any. Above all I just wanted to take that first step to connect to others, finally and start to deal with this in a way that I haven’t before and maybe even help some other people too.

I have been truly blessed to have the love and support of my amazing family and friends as well as my girlfriend who has been unbelievably understanding throughout this time. I really don’t know what I would have done without any of them.

I would love to talk to anyone who feels or has been through the same or similar experience. If you made it this far, thank you so much for your time and apologies again for the super long post.

:slight_smile:

Lun

2

A big welcome to you! Another amazing story of strength and courage. It is great you have such a supportive family, and hope you find another one with all of us here. We have an awesome crew from the UK here that are likely close to home for you. Once again, welcome and Take Care, John.

1 Like
3

Thanks for the message John, really appreciate it! Looking forward to getting involved here :slight_smile:

4

Welcome to the site Lun! As you read through some of the stories on here you’ll realize you’re definitely not alone and yes 8 months still very early 4 years since my AVM removal and if I don’t stay within my limits I still get focal seizures also; though the body might feel like pushing it the brain doesn’t always want to keep up with the rest of the body.
if I walk too far and exercise too much or get overheated my brain put on the brakes and doesn’t care what my body feels like doing, it’s a frustrating learning process but your brain is still healing so hang in there.

1 Like
5

Hey Mike

Thanks so much for the welcoming and the reply. Your response was super reassuring and comforting too - I definitely hear what you are saying. It’s interesting to hear about the heat too as I’ve found that sometimes even if I use the sauna it sets me off. It’s still quite frustrating not being able to do the simplest things but like you said - early days still. I’m glad to hear you are doing well.

May I ask about your focal seizures and what the experience is when you get them? It’s just I haven’t met anyone else who has them.

Thanks again mate :slight_smile:

6

my focal seizures are generally triggered by heat and/or dehydration. they usually start with a dizzy spell along with the odd taste and smell of super glue. I usually just have to sit back close my eyes and let the feeling pass and drink a lot of water and rest and it’ll usually resolve itself in a day unless I really pushed it and then it might take a couple of days to resolve.
My neurologist told me that the super glue taste and smell is basically an aura accompanying the focal seizure. Apparently my focal seizures are centered around the parietal/ occipital part of my brain where the damage was so I don’t have much more than tremors.

1 Like
7

Hey Lun, it’s great to read your story.

If I have anything to help, it would be that my recovery took so much longer than I thought, that I think you should be positive about the road ahead. I think it will still level off somewhat and you may feel better than you do today a year from now.

I had a dural AV fistula discharging into my right transverse sinus in 2015-2016. I had it embolized in April 2017. I didn’t feel “fixed” as the level of change on the blood pressures in my head was so big, I felt really weird. I pursued my doctors for the following 18 months to eventually be told “there is nothing to see, and if we can’t see it, we definitely can’t do anything about it.”

So, I think it can take a long time to feel right after an operation, and it really takes a long time. It took a long time but I’m fine today. Honest.

So, be of good cheer. You’re getting better. It just takes unreasonably long to feel better than you were.

Also, it’s much better to talk than bottle this up yourself, so well done for sharing. I’m sure it will help other people, too.

Very best wishes,

Richard

8

That’s really interesting to hear Mike - it’s just I haven’t met anyone with focal seizures before and seeing how they differ. I know that a big lack of sleep also affects me too. It’s good to hear from you and I hope you’re keeping well with it all.

9

Hi DickD. Thanks so much for the reply, it’s really helped reassure me with everything. I too ha an AVF too in a different part of my head now but my surgeon said I shouldn’t be too concerned about ti and I will see him soon to discuss it.

When you had it embolized, was that a surgical procedure or non-invasive?

Also, about the talking, I find you are right on that too. I think what’s hard is not wanting to bore people with the same stories again you know? I know I shouldn’t think like that but that’s honestly how it feels sometimes.

10

I understand that DAVFs are assessed on a different scale than AVMs for whether intervention is valuable – it is called the Cognard scale and a “1” is at the “not needed” end of the scale. I was never told where mine was on the scale but I was getting dizzy and “thick headed” so I was convinced I needed to do something about it.

I had an embolization as an operation. It is (in essence) very much like having an angiogram but rather than only injecting contrast material, they inject glue or coils or other occluding material. I guess it can take a long time and they need you to be perfectly still throughout, so I am sure it is always done under general anaesthetic.

I feel embolization is an ok procedure to have. If the choices available, it was the one I was most comfortable about, though the only option I was offered, too. It was so ok, if I needed to go through it again, I would do so without hesitation. However, it is definitely an operation and it is not to be put down as uninvasive, as your head is smarting from all of the glue and the solvent and the contrast material, so it is perfectly “ok” but it isn’t quite a walk in the park. I can point you to my detailed story if you would be interested.

Re talking to people, is important to be able to do so. You’re right about ensuring you have at least one person you can download to without driving them away but if you have a partner or a friend or a parent of good standing, I hope you’ll have somewhere to talk. Whenever you need, you can write here, too.

Wishing you the best.

Richard

11

Thanks for the info Richard. I actually have an AVF at the top of my head but my surgeon said that it doesn’t need any intervention, however I will be asking him about this as I want to double check. Please tell me more about your experience if you can.

Thanks for the kind words.

12

Hey, you’re welcome. I’ve been pretty much where you are and it’s a big shock. I found talking to the people here who met me as I was in a bit of free fall really helped.

The Cognard classification is here:

I remember talking to another person who had a Cognard I DAVF and was advised that intervention was not considered necessary but he wanted it sorted, so he went ahead and had an embolisation I think. I’m sure mine was further up the scale. I am convinced I had reflux flow going on.

I’ll find a link to my story for you. In all, it came out just fine. It took 1-2 years for me to feel near enough normal and yesterday and today my head feels not quite right but the docs have plugged the hole and can’t see anything else to do, so I put it out of mind now, until I get any firmer sign that there could be anything to do.

I’m a complete operation wuss, so if I can get through this, anyone can. Honestly.

I’ll find you that other link.

Cheers,

Richard

13

This is part of my journey from waiting for an operation to getting out the other side

14

Mate, thanks for the links. I was actually reading them all already! It seems you have had quite the journey and I’m super happy that you are almost back to your normal self. So just to clarify, at first it was believed you had an AVM but turns out it was a DAVF which you got removed? Sorry for the questions I just keep going back and forth - it’s a bit harder these days to read and keep everything straight.

15

It’s fine.

I think AVM is the generic term used for these things and the ENT doctor I saw detected it using a stethoscope – we could both hear the whoosh of blood going from artery into my transverse sinus; (I even managed to record it on my mobile phone by pressing the microphone to my skull before I met the ENT guy, so I knew I wasn’t imagining it!) – so described it as an AVM initially but on completion of the MRI in Sep 16, the image showed the “AVM” to be a DAVF, clearly limited to the dura. No real penetration to deeper brain at that point.

I’m pretty sure it grew arms and legs between the September and March/April because I was feeling more poorly and my GP re-plotted my head with her stethoscope and then told me how big an area she could hear a pulse over. It was inflating veins on the outside of my skull by this stage. Quite worrisome, as may come across from my write-up. It would lift my fingers off my skull if I pressed down. I’m sure that was evidence of retrograde or reflux flow.

The DAVF was literally glued up. Not removed, just plugged up. This is called “embolisation” and is done via a tiny cut in your groin, a fine tube navigated up to the naughty artery and the glue or coils or other “occluding material” injected to block off the flow.

About as uninvasive as you can imagine, other than that you’ve just had a few mils of contrast material sent round your brain so the arteries illuminate nicely on the x ray machine and then the glue. You spend the next day breathing out the solvent from the glue. Unpleasant but no worse than that.

I had a 6mm cut. That’s all. Even I can have that kind of brain surgery!

But, as you see, it is not quite comfortable and it took a few weeks for me to feel OK.

Hope this helps.

Best wishes

Richard

16

Thanks for the confirmation Richard. I’ve had a couple of angiograms so I know the feeling from the groin to the head, it was however minus the plugging.

Thanks for all the information. I really appreciate it. Hope everything is going as good as it can be now.

Did i read somewhere you were quite active before? If so, what do you do for excercise now?

:slight_smile:

Thanks
Lun

17

Richard,

At least they used to, but I’ve had probably 11 different embolizations and 9 of them went the way you describe it. My last one, well, let’s just say I’m part of the 1% of the 1% and leave it at that. A couple of my angios - back a couple of decades - they had to have me awake so I could move in certain ways and so they could monitor if it was affecting anything. A tiny drop of anesthetic came out and didn’t go where it should and instead went into my brain. i now think I know what the 60’s and 70’s (at least in the states) were so bonkers over psychedelic drugs. Not for me though - the world turned bright green really fast. Sorry, shouldn’t be scaring anyone with stories of old medical treatments.

Lun - I don’t believe we have been properly introduced, but that’s my fault. A very quick overview of my life - diagnosed with an AVM in left neck and shoulder in 1978 (no, that is not a typo). I keep waiting for someone to pop up and say that they have been diagnosed more than 41 years ago. I had major issues and major procedures in 1978, 1987, 2009 and 2018. The first three, after a recovery period, I basically was back to where I was before. I’m realizing now that I was fooling myself thinking that because I wasn’t, it was a slow slide. 2018 I had embolizations done - “30 coils and a whole bunch of super glue” in my brain. It was successful in that it reduced my risk of a brain bleed. It was not successful in the sense that it gave me some nasty side effects that affect me now, 20 months later and they really haven’t changed since June of 2018.

Questions? I’ve got way more questions than answers but I’m not afraid to discuss hard stuff on here. This group is great for that.

TJ

18

Lun:

We are a great group! So, welcome to our AVM family. We all have our, stories of fear, anxiety, acceptance, depression, treatments, why’s, how long, what’s normal, what’s not, and will I ever be normal again! Next month will mark my 5 year AVM journey! My AVM in my Cerebellum ruptured and a coma followed. It has not been easy, but it has gotten easier as time goes by. Five years ago I was a mess, but today, I am alive and thriving! I am thankful for everything big or small. I’m truly a better, kinder, more patient person than I used to be. I’ve had 2 Gamma Knife Radiation procedures and still, a small percent of my AVM is still taking up space in my Brain. You can reach out to us any time you have questions or concerns. Chances are, many of us will share things we’ve learned on our journey’s with you. Of all the doctor appointments, test, scans and angiograms, my go to remedy is P&P (Prayer & Patience). Try it. Blessings to you and your family as you navigate your AVM journey. We are here for you. Again – welcome!

Sharon D…

19

No, that’s not me! :rofl:

I’m waiting for work to calm down a bit. Then I’m hoping to get exciting things like a decent walk, some regular cycling and maybe a bit of badminton in. I tried the badminton rather soon post embolization and I don’t think it did me any good at all. So, whatever you do, whatever you used to do, is to get back into it carefully post op.

It’s a good thing to keep basic cardio work like a good walk or a bit of a bike ride or whatever going because it keeps the blood pressure down: sitting round doing nothing would be inclined not to help. But avoid strenuous exercise while you have the AVM untreated – avoid putting your blood pressure up – is the advice I believe to be correct.

1 Like
20

Thanks Richard. It’s been 8 months post surgery and I still can’t really do alot of physical activity. Feels like lately it’s gotten worse and just brings me down quite alot of the time. Good to see that you’re keeping active though!