Big Update: I will be having an embolisation and craniotomy

Support
,
1

Hey all

I plan to document everything properly this time. 2 weeks ago I got huge news.

For anyone not familiar with my story, I was diagnosed May 2017 with a high pressure medium-large left occipital lobe AVM. I had an embolisation which partially treated which successfully stabilised my AVM but also triggered a stroke during the OP. (More info here: My left occipital embolisation story)

I was told until now during every MDT meeting that further treatment would never be an option. (More information here: My MDT meeting news)

2 weeks ago I had another MDT meeting. The neuro team started the call informing me that they think I should have another surgery and have my AVM fully treated. They might be able to get it all with an embolisation but will likely need a craniotomy back to back.

For years I have asked about surgery and every time I’ve been rejected. I asked about whether I would ever need surgery and whether I should get it out the way and they said I’d monitored for foreseeable future.

Suddently I’ve been told I should have full treatment because long term my likelyhood of a stroke is increasing cumulatively. I was told they weren’t afraid of radiation exposure with an embolisation. They are not concerned about significant danger in treating me. I will still with 100% certainty have full RHS visual field loss but other than that the team is confident that it will be this alone. 1% chance of anything to go wrong.

I will have an embolisation by the same neuro-radiologist who expects to take about 3/4 of last time, so about 6 hours. He will try to glue it all but might need a craniotomy to make sure it’s all gone.

I’ve been told to be prepared that this surgery will put me a step back in my recovery. Worsened fatigue is to expected. Another intensive embolisation means I should expect to have hairloss all over again after I’ve finally got beautiful longer even and thick hair. My scalp has recovered and my hair grows at the same texture. So I’ll likely have to go through this process of hair growth again (more info here: Post embolisation hair loss - my hair recovery (pics and dates)).

Inspite of wanting this for so long, I have had lots of emotions. I’ve gotten so far in life. I feel beautiful again, the same as before I started feeling Ill. I’m fully independent with a full time job which I love and living in a flat alone and fully supporting myself. My energy levels are the best they’ve been since… I can’t even remember. Don’t get me wrong I’m still always tired but much less tired than before. I had a breakup for the 2nd time with my ex but I’m finally feeling better in myself 5 months later. I’m in a great place in life.

I have been told to expect to be back at work within 6 weeks but I still feel heartbroken over the idea of taking a step back in my progress. I have felt angry about being uninformed and not being given the opportunity to have this dealt with sooner. They made this decision based on my Jan 2018 embolisation and August 2018 angiogram scans. So these decisions aren’t a result of changes to my MRI scans which are consistent.

But in the end I know this is something I need to do and something I will get through. I want it out the way and to put it behind me. It’s hard knowing this has set my timeline back from realistically finding love so I’ll have to go through it single again. Someone can like me now but what about when I’m part bold again? It sucks but it is what it is. It’ll be behind me.

As for dates I am planning to book the OP for March/April 2022. I will have been at my job for a year in January and I’m anxious about telling them before hand. Not long to go!

Corrine

4 Likes
2

Wow!

You don’t do things by halves do you?

I completely understand the feeling of taking a backwards step but I guess the question is, is it the right step, especially longer term? If it is, you know the answer.

I am sure I would be at least as mixed up about it as you.

Do you feel at least as though you know much more what to expect than you did going in blind (metaphorically) first time? Does that knowledge help? I hope it does.

You know I’m with you all the way.

Richard

2 Likes
3

Great to hear from you Corrine! I think this is fantastic, and while a bump in your recovery the end result is the goal. You are in a position of knowledge and experience, that will make it so much more manageable. I love the saying there is a reason the rearview mirror is smaller than the windshield. We need to take a peak at what is behind us but most of our attention and energy is looking forward!

I echo Richard, with you all the way.

John

2 Likes
4

@DickD Haha I know right?! I’m living a more “interesting” life than I had hoped for!

@JD12 @DickD thank you both so much for your support and it means alot being able to talk to people who know everything.

I have always felt this was inevitable. I know statistically the odds aren’t in my favour long term and all things considered I think I’ve coped with knowing that pretty well. But I don’t want to live with this forever, I don’t want a high risk pregnancy or to have to have a C section out of stroke fears, to worry loved ones and hold back to be “sensible”.

Having this surgery is a no brainer (ha) when thinking long terrm. 1% immediate surgery risk vs 2% cumulative added risk each year. I just wish I had done this all sooner, so I didn’t have to go through it again 4 years apart. Knowing what to expect both helps but also adds to my grief. There isn’t the “ignorance is bliss” luxury and this time there is no hope that I’ll come out of this unscathed, I’ll lose the remaining RHS visual field permanently. I’ve been told that I’m young enough for brain plasticity to help better then if I were older but that also means fatigue in the process.

I feel horrible about losing my hair again as vain as it sounds. I hate the thought of being deeply exhausted again and being single through it all again. I feel like if I don’t do it now, it’ll come up again in later years as something to worry about. I’ve spent most of my 20s either deteriorating or recovering. I’ve only got my late 20s left now which are being somewhat taken from me too.

I think the thing I’m trying to get over is being heavily misinformed. That my position hasn’t changed for almost 4 years and they could have done this in 2018. If they had done right now I’d be in the exactly the same position in life but with less sight I’d have had a whole almost 4 years of recovery, I’d look like I do now and I’d have it all behind me.

I feel like misinforming me has taken years from me. Now instead of being in this position at 27, I have to work my way back up to here. The med team threw “we were working around you” somehow making this delay my fault when I’ve consistently said I’m ok with losing the sight aslong as I’m not high risk of anything worse happening. Now I’m told the risk of anything else happening is so low, that they’ve gotten the hardest bits to reach and radiation exposure is no longer a concern. It’s all totally opposite. I’ve been clear headsd and never gotten emotional during hospital appointments, nothing to imply I wasn’t mature enough to make my own mind up.

I think although it would be scary atleast if there was a change in my condition and it now became important to have surgery then I’d be able to get my head around that the scale between risk of OP vs risk of leaving it alone has changed and has affected the advice. But knowing the scales haven’t changed at all and I’ve been misinformed is really getting to me.

Legally my company cannot sack me although as per my contract I can expect to be put on SSP after a week. I know they will have to make reasonable adjustments too, if I need to be remote more then I’ll have to be supported. I’ve also got my 1 bed flat and with the SSP and some savings, I’ll be fine to support myself independently. I’m near to my support network and close enough to get some help from family but not need to move back. So those are some good things going for me.

Now it’s a matter of telling the rest of my friends, deciding when to tell work (I’ve been clearly less productive recently) and what to do before I go for the OP.

This has turned into a whole vent. Hopefully it’ll help looking back. I will properly document and hope it helps others who might be or come to be in my situation.

So appreciate your support and we must catch up on both your ends!

Corrine

2 Likes
5

I think the way I look at things when life takes an unhelpful turn is just that: from time to time life does take an unhelpful turn and the only thing to do is to knuckle down and deal with it. Your thirties are going to be perfect, so don’t worry about scribbling all over the “best” of your twenties: thirties are no different at all. It’ll be fine. In fact, John and I can tell you that nothing really changes even as you find yourself in your fifties!! (I think the only thing that changes at all is when children come along.)

Good to know you’re rationalising this well. Put the reasons for delay behind you: they’re only going to put you off course.

Oh, and I’m not sure there’s any real bliss in the ignorance we had pre first op, is there? We all worry ourselves to bits about the unknown, so I’m hoping you can look at this and know what you’re in for, that it is doable and you can get out the other side and work towards a future with this behind you.

Lots of love,

Richard

2 Likes
6

I am so happy to hear things are going better and progressing in a positive way. It will be great to follow your updates along the way. Will certainly keep you in my prayers.

1 Like
7

Hi Corrine

As I’ve met you a few times, I’m finding it easier to write a more measured response.
I wish medical decisions and discussions could offer more certainty and clarity but I think they never will, especially in brain AVMs, due to the low number of cases and massive range of individuals.
I’d take the treatment and the step back because it is more likely that you will make a stronger long term recovery than if you wait.
As I’m over 50 I don’t think you should be bothered about age, however I know I was bothered at age 20 to 28 about being left behind. The right person for you will understand and you will meet them.
I just wish you all the best.
Tim

3 Likes
9

@DickD @JD12

I’ve had some time to process everything more and gotten over the initial shock of it all and I feel significantly better. The anger has lifted and I feel positive!

I think I do agree, knowing what I am going into is going to be helpful. I’ve got a stronger support system than before who I can rely on and I’m going into things physically and mentally healthier, I’ve got independence with my career on track and a flat to myself when I return home from hospital. The neuro team are going into things far more confident than last time and I’ve been promised that I will be leaving the surgery AVM free!

Oh do I hope that I don’t lose as much hair or it’s just shaved off rather than it falling out - that will make for a very happy me!

3 Likes
10

Hi Tim,

So good to hear from you!

Absolutely agree, it’s best to get it done sooner than later. I am healthy and as my neuro-radiologist said, I am sufficiently young that my brain’s neuro-plasticity will cope far better with recovery. I am prepared for getting through it and hopefully this time around will be less awful.

Can look forward to having a family without worries and just move on. Seeing how great I am doing now, it gives perspective that there is a light at the end of the tunnel. During the first period of recovery I can refer to now, if my hair falls out I can look back to how beautiful my hair has grown out now and can look forward to that again.

I’ve actually been on a few dates post dates with 4 people, been totally upfront on the first date about everything to expect and… none of them freaked out?! They actually admired my confidence and transparency. I’ve continued on to dating one of them who I really click with. He knows about the likelihood of hair loss and everything but he seems to still like me anyway and wants to take things seriously. We will see how it goes but it’s a huge confidence boost to know that there are people who don’t see it as a put-off and can see my other qualities as worth while.

My ex got to skip the crap period and get back together once I was finally looking more “normal” again. I feel like I deserve someone who can love me through the tough period rather just get the best of me post recovery again. My search for love hasn’t been paused and even if I don’t find someone until I recover, I won’t stop giving the chance that it could happen before!

Just thinking about sorting out a get together soon, will keep updated here. Would be lovely to see you if you’re still in the UK?

All the best.

Corrine

11

@Corrine

Can I tell you that if you lose your hair again (and hopefully you won’t be under the x-ray as long as last time, so maybe you won’t lose it) that you absolutely ROCK the hairless look. Seriously. While losing your hair is a big deal, especially for ladies, your pictures from last time show that you have eyes that dazzle and your hair line doesn’t matter at all.

All you say about the team being more confident today than they were a few years ago is great. It’s a challenge for you: we all understand that: but it sounds much better than last time. I’m sure what they saw to start with was quite daunting, and you said that it was more complex once they started with you than they anticipated, so it makes sense that now they know you, now the difficult bit is behind you, that it looks less daunting.

Time to rationalise it with yourself definitely helps and letting the disappointment of delay go is good therapy. Be positive. It’s much better.

Wishing everything good for you (as usual)

Richard

12

Thank you alot. This means ALOT. I’ve had a bit of a on-going wobble self-esteem wise overthinking things about the risk of hair loss all over again. I guess one positive is my scalp has had plenty time to totally recover so should be capable of healing back again if I do lose hair again. Just difficult getting compliments when I know full well I am not going to necessarily look like this in 6 months…

I think I will get creative on cover up options for the period of time it takes before the hair evens out again. This time I’ll have regular hair cuts and enjoy different hair styles as it grows out. I will be pretty much VI and passing like I am now but hair loss is far more visible however it is temporary!

I feel quite confident about the op going well for the same reasons you’ve given. I found out that actually my memory/concentration/visual and hearing processing delay issues are actually due to temporal lobe damage which won’t be touched cause the remaining AVM is only covering the central vision centre now. So that is a positive!

Have got this! Amazing to have you all on my corner too!

Thank you Richard :slight_smile:

Corrine

1 Like
13

You have got this!

This kind of stuff shakes us. It does. So it’s ok to be shaken by it a bit. But I don’t think you should feel low on your self-esteem. The other people you’re comparing yourself with haven’t had to deal with these challenges. They don’t know. So you’re better than them because you’ve been through the mill and pulled yourself up again on the other side. Yes, it took time. But you did it. It takes everyone time.

You’re always welcome to a big virtual hug from me when things get a bit tough. You’ll get through it. Have a hug when you need.

Lots of love,

Richard

15

It matters rather more to the ladies.

16

Sorry, I think I can post a solution.

Hair extensions?

$600

They last 3-6 months

What u meant to say is health is more important. But I see what you mean

17

Corinne has been through this before. I think she looks A•MAZ•ING with absolutely no hair (if you look for her hair update post in AVM101 you’ll see) and I think she managed to get a wig (usually available for ladies going through cancer treatment) from somewhere that specialises, so we know wigs work, too.

It’s just she’s not looking forward to all the trauma again.

I mean, we know, don’t we? But she’s going to be A•MAZ•ING again. I think.

Lots of love both,

Richard

18

Hi Connie, this is Mary and I’m new. You just described, better than I could, how my future looks. I love knowing I can just vent like you and it’s to fellow patients that can and do support us. It’s all that keeps me going. Just keep sharing and know we hear you and care.

1 Like
19

My hair is almost perfect now

2 Likes
20

I did my first hair cut :haircut_man: after surgery
The lady said she can barely see the scars

3 Likes