My left occipital embolisation story

[corrine]

Hi all, the bold eagle has landed! I am very sorry for the delay in updating you all on my embolisation experience. I was intially working on writing a very indepth account of my experiences however I have decided to cover the main bits here. I will then post my blog on here with a lot more detail once it is ready - it has been started and I am working on it almost every day between naps.

I found out on the day of the surgery that I the information I had been given about my AVM was a misunderstanding of the angiogram scans. What I initially believed was I had a 4cm left occipital lobe AVM which was eloquent and relatively high flow and that brain tissue around the AVM all looked healthy so there was a chance the sight I had already lost might return - I wasnt too fussed about that but it would be nice. I was advised that I would be having several embolisations, reducing my AVM in size by no more than 30% each time to keep risk low, and that any remaining would be removed by gamma knife. Any sight loss post operatively would most likely be due to swelling and temporary.

My neuro-radiologist was shocked I hadnt been given a meeting weeks in advance of my surgery to be informed. He informed me that I had an extremely rare and aggressive AVM, that I was already getting preminent brain tissue damage and that the vessels surrounding my AVM looked very unstable. Essentially that I was an incredibly high major rupture risk. He said it was critical that he reduce the AVM be as much as possible all in one procedure. He also said that any sight loss would most likely be perminent with very little sight possibly returned due to swelling going down. He gave me a 1% risk of death, 5-8% risk of total right vision loss in both eyes, deficits in communication, right side paralysis and potentially other major deficits. He made it clear it was my decision if I needed more time to reschedule but it was clear it was urgent. I had 10 minutes to sign or not sign the consent form.

Considering what I had just been told and also what I knew inside of me, seeing myself deteriorating over time and how it played on my mental health and will to live. I went through with it.

My parents were told it would be a maximum of 2-3 hours in surgery. It took 7.5 hours. My amazing superhero of a neuro-radiologist sucessfully reduced my AVM from 4cm to roughly 0.4cm! I spent 12 days and 11 nights at the hospital.

I unfortunately suffered a controlled stroke during my operation which has left me almost completely blind on my right hand side in both eyes due to the brain damage already confirmed on the MRI. They do hope a little will return as swelling goes down but most is perminent. I have luckily kept just enough central right vision in both eyes to see full faces, read and have depth and motion perception. I will never be able to drive. As a result of my vision loss I experience hallucination images in my blind side called “charles bonnet syndrome” they initially made me feel very nauseous from the jerking of the images but they dont anymore and they are less frequent. Most of the time I just see white light disturbances. The neurologists believe it will eventually subside to nothingness.

I have lost half of my long very thick hair due to all the radiation over the long procedure which I wasnt warned about because it is so rare. Usually people only lose a little section if they do - but then again my surgery was rare in how long and intensive it was, so I guess they didnt fully know what to expect.

EDIT: here are some photos of my hair transformation:

And the total freaky collection of hair malted from my sore sore scalp:

Also and I beleive these four might be down to just swelling since they have all happened since I stopped the steroids, over the past week. I am waiting to hear back from my specialist nurse:

• My left leg feels funny, I can walk and feel it but I cant balance on it and it feels as though I sat on it for a little too long. I cant balance on it at all either I immediatly call onto the other foot where as I can just about balance with effort on my right foot.

• Admittedly didnt try writing before this week but I now find it difficult. It is not that I struggle to remember how to write or forgot the words. It is that I struggle to co-ordinate the pen to write, taking me longer and my handwritting has changed for the worse.

• I also have been having intense dreams and waking up talking out loud which I did again back in the hospital but not since until now, never did it presurgery.

• since yesterday I have began to have a pulsating pain around when my avm is and it’s been happening on and off ever since.

All this at 23. But even then after all this, I am so happy I did it and I am happier than I have ever been. For the first time in my life I wake up in the morning completely awake and refreshed. I have energy I never had before, I had always just considered myself a lazy person and it became a part of my identity as I was always tired ever since I can remember. But now once im AVM free I want to go for hikes, I want to enjoy runs and really work this beautiful body! I do get tired out by too much visual stimulation but it is only 3 weeks since my surgery. I can finally focus on conversations and feel so much calmer for it. I also for the first time after living with low self worth all my life can honestly say I fully love myself and despite being half bold and chopping the rest of my hair super short, I feel more beautiful than ever.

I lived my life in a negative cycle before: never feeling good enough, letting people push me around, worrying about peoples opinions of me, getting into relationships where my feelings and needs were not important but id constantly be looking to earn love and go above and beyond to meet their every need and want, holding onto resentments and hurt feelings. Having my life saved has really changed my mind set and I have let it all go and im just left with happiness.

I dont dwell on who wasnt there for me but I think of and feel so so blessed for who was. I went through a break up with my boyfriend of 2.5 years a week before christmas because I couldn’t handle the stress anymore. I was scared but I am so happy now that I did and proved to myself I could stand single and survive what ended up being alot more complex and intensive surgery than originally expected!

I would give up this sight any day for the feeling I feel now. I feel like a better me and I feel so grateful to be alive. Life used to feel like an option to me and now I have had to fight for it, I refuse to take it for granted. I have lost sight but gained alot more perspective!

I know the journey isnt over for me yet. But I am out of the major danger zone and the specialists believe they now have time to fully investigate in depth all options now: craniotomy, gamma knife, a final embolisation or if they assess the risk of losing the critical remaining sight compared to leaving it be, they will monitor it. I feel safe in their hands and it is out of my control so im focusing on my recovery and taking it easy without guilt for once.

This experience has also inspired me to founder “UK AVM meet up events” where I have hosted two events already. And I am now working on a blog sharing my AVM journey and other personal challenges I have faced. I have met some amazing people on this journey and even had 3 AVMers come to visit me at hospital including @DickD and @Shimarlie which means the world to me and truely warmed my heart <3

As long as I can read, I can complete my masters and graduate. I can become the chemical engineer I have worked so hard to be. And I also plan to spend the rest of my life advocating for minorities and people with disabilities and being a positive example. I dont see my visual impairment as a sob story, I see it as an opportunity to overcome and grow as a person. I have been terrified of losing this sight for so long and now that I have I realise it is so easy to make something in your head when you havent experienced it yet, the end of the world. There is some fear of what is to come but I dont let it take over my life anymore.

Another positive is the EEG results have shown I am not a seizure risk so I’ve managed to wein off the Topiramate, whose side effects I hate.

So that is my update!

I will be back on the site alot more now and anyone who would like to ask any questions - feel free to. And if anyone would like someone to talk to about anything, welcome to PM me.

My bestest wishes to you all and we are all in this together!

Corrine

[JD12]

I’m so happy to read this update, and while some of the side effects will take some adjustment, it is clear that you are a truly amazing human being! You have such a fantastic attitude and outlook, you may not realize it but this impacts many people in an incredibly positive way. You will make us all stronger. Thank you, John.

[corrine]

I have always been forced to break the odds and go against peoples opinions. In highschool my science teachers told my parents: Corrine will never succeed in the sciences, she should take her foundation science GCSE so she can get a C and pursue something else. I went on to study the highers GCSE syllabus at home with the help of my dad and achieved a B and A and went onto Alevels in all three sciences and maths and an additional extended project AS.

The first time around I didnt do so well and the school teachers and careers advisor urged me to go to a second rate university through clearing. They said few students who do an extra year ever suceed to go to a better university. I demanded to do the extra year and sucessfully got into a top 10 university in the UK for both chemical engineering and overall as a university.

At the beginning I got into a emotionally, physically and sexually abusive relationship and didnt get help. It eventually ended and I was kicked out of the house in the middle of my second academic year. I luckily managed to get out of the contract and find a new place to stay but my mental health was very bad for the remaining year and I had lost alot of my support system. I failed almost all my modules and passed the retakes by the skin of my teeth. So there I was with a low 3rd which this time it counted 50% towards my overall grade. My dream and goal was to do the MEng course, my head of department said it was just highly unlikely, without a incredible turn around since a 2.1 is needed to get in but if I really wanted I could attend the extra module needed to take the masters. I worked and worked and worked. Igoring when class mates would warn my boyfriend at the time that I was the dummest person in the class and he could do better. Igoring when people would look disappointed when they found out I was in their team and would talk down to me. And at the end of the year I achieved no less than a high 2.1 in every exam. Although overall I had a middling 2.2 I was given the opportunity to take on a masters, this was the first time it had ever been done. My head of department defended my case that he believed taking on the MEng with the fourth year now worth a 1/3 of the overall grade, that I would graduate with an overall 2.1. I finally earned the respect of my fellow classmates and my lecturers.

Finally during my fourth year my health started to deteriorate. I had all the blood tests done and nothing came up. I still knew there was something very wrong with me. My individual project supervisor noticed my lack of focus and progress. He started comparing me to my peers and being very critical of me despite me saying I was trying my best and struggling to keep up. This all took a toll on mental health and I started counselling but it wasnt fixing my problem. I eventually pushed hard enough on the doctors that they demanded me to get an eye test which confirmed my sight loss but I had a long time to wait before I got diagnosed later in May. I made the decision to categorically refuse to complete my exams or write up my dissertation on the basis of my mental health since I had no evidence of any other health condition. I was pushed and pushed that this was a bad idea but I just knew I couldnt do it anymore. I ignored some family members dismay, friends and class mates comments, even my dad not believing me. Now I realise I made the best decision I could have done, only last month finding out, the stress of continuing my studies could well have cost me my life. I am glad I listened to my body and not other people.

This is not meaning to be a brag post. It is meaning to show that if I, a girl from a working class family, who completed schooling in a pretty rough school bullied through most of it, who has lived with pretty low self worth most of my life can beat the odds. Anyone can. Anyone reading this, you are stronger than you think. Let my experiences be a proof to you. Things can get tough and really unfair and people who are meant to be lifting you up sometimes don’t. But you are beautiful, you are worth it and you deserve to be happy. I wish I realised that sooner but I finally do and I won’t ever let that go <3

Happiness for me all came from the realisation of a strong sense of self worth, a sense of personal empowerment and the knowledge that I can and will overcome any challenge, and letting the built up hurt I had carried for so long go and replacing it with love to be shared with others

Thankyou John for your very thoughtful and kind words and your encouragement. It means more to me than you can know.

Love and the best of wishes,

Corrine

[Amanda13]

Welcome back Corrine,

Wow you certainly have been through the mill, you should feel extremely proud of yourself. Your strength is amazing and an inspitation to us all!!! I am so glad that everything went ok with the op. Take time to heal tho. By the way your hairstyle rocks, it really suits you !!!

[corrine]

Thankyou so much Amanda, I really appreciate the hair compliment too - I really like what the hair dresser did with it too, I was just planning to go for a complete bold look initially! But this is much nicer and looking forward to it all blending in but really your kind words mean so much to me. As @electrician said, all of us AVMers make a new definition of strong! We may not have signed up for it but it sure builds charictor

I will take my time I promise, for once, I am in no rush and ill leave the work to the specialists and let mum help me giving her lots of cuddles in return until im able to help more

Lots of love,

Corrine

[DickD]

Corrine!

Welcome back! What an amazing transformation! Everything you’ve written is so strong and positive, it’s fantastic. It really is. I hope you do look after yourself, take it steady, and keep believing. You’ve written some great stuff above that I hope you can always refer to.

You got me worried a couple of times when you went quiet on us but it was great to catch up with you a little offline and to surprise you in hospital (I managed to get the clerks to point me to the right ward, armed only with “Corrine B” and your operation date, so it was good to be able to actually see you, having got as far as the hospital front door).

You’ve done a brilliant job of organising some meet ups.

I completely agree with you about your transformation: you’ve managed to take very difficult circumstances in all that you’ve set out above and make the right choices. Get well soon and all power to you!

Lots of love,

Richard

[corrine]

Thankyou richard for your supportive and compassionate response as always, you are a sweet angel of a man and I am so proud to call you my friend

I fully intend to use this post and my blog posts I am working on to refer back to during the challenging times that life so generously gives at points and maintain the positivity we keep on fighting through as one, together!

I am very impressed with you managing to find me, I forget that you dont have facebook to remind you of my last name. I was sucessfully suprised and very glad you managed to find your way to me. Seeing you was a great comfort to me

I am excited for you to finally get some answers in march, time has flown by quickly atleast it has done for me! Do you have the dates for both your boy and you? I’d like them so I know exactly when to send out floods of positive energy and loved filled wishes

I am sorry that I have worried you - things really did turn out to be more complex than either of us imagined! I know I tend to be an odd ball but I hadnt really expected my neuro-radiologist to call my case a “one in a million” case and I was very much distracted by it all as you can imagine. It has nice though in a way knowing I am in so many peoples thoughts including yours. Definently a blessing having this wonderful community.

Lots of love,

Corrine

[DickD]

Corrine,

I worry about everyone that I wish well into an operation! The idea I had back in June to have a prayer diary was a nightmare for me. This is a very old historical reference to the Falklands Conflict but I felt like Brian Hanrahan counting everyone out to hospital and counting everyone back. I’m so glad you’re safely back.

I’ve not been public about my son but we are both up to hospital 7th & 8th March, so we could use some positive thoughts or prayer at that time. He has a birthmark in almost exactly the same place I had my AVM, so we want to get it checked that it isn’t an AVM. And I’m getting mine checked out again – at least starting the process – as I went dizzy in November and I think I’ve got another AVM or some other residue going on.

I have to agree that having this community is a great thing, to be able to get support from people who’ve been through the same mill, and to be able to offer support is fab. As you might have noticed by now I’m ODing on the giving but I hope it is a good thing.

Lots of love,

Richard

[corrine]

Haha Richard, you always have the best referances! I know you do and that was such a wonderful idea on your part too - you are always so active here in helping people your right but in the best way and it honestly does so much for all of us. This place really wouldn’t be the same without you but ofcourse no pressure to keep consistantly giving - just your presence whenever you have time is amazing.

Eep. I didn’t mean to out you! I was under the impression your sons scan was originally placed because of his skateboard mishap - which I considered a little less personal - Im very sorry I wildly misjudged there and should have thought things through more before hand. I am glad to know the dates I will put them in my calender now! Since I am still a total scatter brain - some things don’t change I will be wishing for a quick fix for you and a false alarm for your boy

So so proud of our community

Lots of love,

Corrine

[Kell]

Best of luck Richard hope all goes well.

[corrine]

Update

I got a call from the hospital apparently the neuro-opthalmologists who were orignially not keen to see me again until may, now really want to see me next month!

I am going in on the 8th March at 11:30AM. And you can bet me and mum will be going for dimsum in china town as a treat when we are done with all the eye tests. So they haven’t forgotten all about me

Also finally got in touch with my specialist nurse and she said will email my neuro-radiologist now to decide whether I should take a scan first or they should just put me back on the steroids and see if the funny symptoms calm down. Result! Now I can stop worrying about it and leave it until she gets back to me

EDIT: I just got a call from the hospital and have been booked an appointment to see my neuro-radiologist on march 6th at 2:30PM, looks like the first week of march will be a busy one!

I have a graduate scheme assessment centre on tuesday next week too, the final stage of the application. They have been very understanding and have booked me and my mum a twin room since I don’t feel ready to travel great distances to an unfamilar location alone! Would be great to have a job to look forward to once I am hopefully fully recovered in september

Lots of love and positive energy to all,

Corrine

[BoxBarge]

Corrine, WOWOWOWOWOWOWO!!! Congrats your WILL to get things done for yourself! Way back in 1990, I got my very large AVM fixed quite well but what a journey it was. I suffered 2 strokes during 7 brain surgeries, and when I was started to recover, I was like a baby starting over w/EVERYTHING. I was 29 then. With me, I was told recovery will take @ 12 years, but year by year, AFTER THAT, I am STILL recovering! I hope I will recover FOREVER, and I hope you will TOO! ‘Power from WITHIN’ and ‘Strength From Above’, anything IS possibe!! Good luck and May God Be With YOU.

[Lulu1]

HI Corrine. Thanks so much for updating us. Sorry to hear of your deficits but it sounds as if you are definitely looking at the positives in your life now and are much happier for it. You are one very brave lady and I really do admire you.

I understand that you had to go ahead with treatment really as you were at a high risk. If there is anything I could ask you it is whether you would have still gone ahead if you were low or negligible risk? I ask because my own AVM is unruptured and untreated. I have wondered about treatment. But as my AVM is stable and low-risk I don’t know if it would be stupid.

Thanks
Lulu

[Stevek350]

Hi Corrine;

Your story is very inspiring! I also went to Engineering school after my AVM and found College and later University to be very Therapeutic in my healing and dealing with my changed life. Best of luck to you!

[corrine]

Month post embolisation update

So some things have changed and happened since my last update.

• my writing has returned back to normal, hand writing is back to original style and no longer finding it challenging

• I beleive some upper right hand sight has returned to be confirmed on the 8th March at the neuro-opthalmologists

• my image hallucinations have returned, but not constant like when I was at the hospital, they tend to come up when im extra tired or had too much visual stimilation. Ive noticed when im well rested, my blind side tends to fade to nothingness (with no white light disturbances or images)

• on sunday last week I had an odd visual disturbance: as I was looking at my phone screen I saw a bling dot in my right central vision. This dot grew gradually in side until the circle stopped growing. It didn’t take up all my central vision but enough to make me unable to read. This showed up in both eyes. I felt drowzy and light headed and fell asleep after about 30-45 minutes of this. When I woke up I had a non-migraine like pain in my back of head and neck and very wiped out.

-since weaning off the steroids a week after leaving the hospital, I have had a steady decline in energy levels. At this point my energy levels are very low and I look very pale.

After reporting all my concerns to my specialist nurse and on this monday got a call with an urgent appointment made for me on wednesday this week with one of my consultants team.

This put me in a tricky predicament since I had already said I would attend the tuesday to wednesday graduate scheme assessment centre. Luckily I called them up and they were completely understanding and said not to worry, health goes first. I am going to be booked in for their next assessment centre date instead

So wednesday this week was a bit of a stressful experience to say the least. Had to wait an hour to be seen in a very cold waiting room then we were seen by once of my consultants trainee regestrars. I told her about all my symptoms, she tested my slightly numb leg and saw it had full strength still. She tested my balance and saw that its very poor on my left leg. The saw my hair loss and was shocked. She told me that what I was told was wrong: that the hair loss has nothing to do with radiation from long intensive embolisation and it was due was a vascular issue. She explained that blood circulation was cut to my scalp during my procedure and the hairloss was likely to be permanent. She also said the scalp can sometimes turn black in time too. My heart dropped and I was pretty much in shock leaving to go for the MRI.

When going for my MRI thank goodness the neuro-radiologist who preformed my angiogram rushed up to me. She had just gotten off the phone with the regestrar and told me what I was told was absolutely wrong. That my hair loss is 100% due to radiation although the extent of loss is pretty much unheard of so is the intensive procedure performed. She is now going to refer me to a specialist to do an investigation regarding my hair loss and see how much radiation I was exposed to. She said aslong as I havent received over the thresehold level of radiatiom, my hair will most likely grow back with time. That was a big releif to have some reassurance. She said my energy boost and pain disapearance whilst on the steroids was a side effect of the steroids - so she was not suprised at all by me feeling drained out whilst off them since I now feel all my body has gone through. Went for the MRI and got to go home.

Got a call back on thursday morning from the regestrar. She admitted the hair loss was due to radiation but that she had never seen a case like mine. She didn’t apologise which I am annoyed about after apearing so 100% sure without consulting a neuro-radiologist. She said the specialists will discuss me in their board meeting on next monday looking at my scans. She told me my scans had been analysed and my swelling has gone down considerably, my symptoms are not due to swelling and I will not need to go back on steroids for the time being. The next step is going for an angiogram to determine the cause of the symptoms and also discuss further treatment. The board is also very interested to see my visual field test results when I go for my neuro-opthalmologists appointment on thursday next week.

Another update from yesterday (thursday 1st march) is I have lost more hair since the last photo update shown below. At this point the hair style just wasnt working anymore…

I decided I was ready to say goodbye to my remaining hair yesterday, I think I made a very bald move…

Ooo but I be wurrrrrrking it! Feels like a relief to be honest, didnt have enough hair remaining on the left so it all kept flying upwards.

Edit: yesterday was also big because I went out of the house alone for the first time. Kept it locwl but managed to go to post office, go to the shop to buy bread and go to the salon - all without slipping or bumping into anyone! So that was certainly empowering

So that is the update for now folks!

Sending love and best wishes to you all

Corrine

[corrine]

Hi there Lulu,

Thank you so much for your very kind words, im glad all my blabbering can help!

Hmm my answer depends on some things…

In this scenario: how is my life affected by my low/negligible risk, stable AVM: Do I have to take medications with awful side effects for it? Do I have symptoms that affect my quality of life much? Do I need to take precautions that really bother me/limit my preferred lifestyle?

Now regardless of these ubove questions, I think I would have to go to get several opinions with neurosurgeons and neuro/interventional-radiologists experienced with treating AVMs either way.

This is because even if I am low/negligible risk and stable AVM, I would be aware this could change down the line so I’d rather have opinions on my options to make a thoroughly educated decision. Id still check back over time too just incase there are new developments and the opinion changes if I got a “don’t touch it” when I first investigated ages ago.

Now if I talked to several specialists and they say “treatment risks such and such deficits, more so than leaving it alone” and their opinion taking into account the affect this AVM has on my life is “dont touch it” then I would not touch it.

If I found one or two respected specialists who are confident my AVM is treatable with little risk of deficit, or the risk of deficit is worth it to me compared to the affect this AVM has on my life taking on the good chance of living AVM and symptom free. If they think its treatable and a good idea. Now id really have to think about that.

Regardless of whether I needed my op being at high risk. The effect of the AVM on my quality of life would make it hard to give up on treatment. If my AVM was low/negligible risk and stable but everything else remained the same I would have taken the slower less risky route. I would have reduced my AVM in stages with several low risk embolisations, with just temporary sight loss to worry about. Or had several treatments of GK over a number of years if that wasn’t an option. I’d have the time to take treatment at a lower risk. The crappy slow treatment journey would still be worth a chance at a better quality of life at the end cause I was truely miserable with the side effects.

I would not however have gone for the major risky op I had if I could afford to not do it, id be willing to be patient. The deficits I risked… I feel I’ve come out relatively well considering. But I personally would never do it purely due to impatience when safer routes are available if I can afford to.

Hope this makes sense!

Lots of love,

Corrine

[corrine]

Hi there Stevek,

Thankyou very much! I’m excited to finally finish off my MEng and finally graduare. Proving I can still do it and suceed - that will be the theraputic part I think! Excited to enter the working world too

Did you stay in engineering? How do you find it?

You have a very inspiring story too! Its amazing you got back to college so soon after your bleed too and later pursued a degree in Mechanical engineering. You sound like a highly motivated and driven individual

Best wishes,

Corrine

[corrine]

My goodness @BoxBarge, you sure have been through it!

Thankyou so much for your encouragement and very kind words and wishes, and ofcourse for sharing your amazing story with me!

You remind me that even on the bad days I am never alone in this journey. You are right, we do have to keep onto that power from within. Recovery can be longer than anyone could imagine, some sooner than others or for some of us its a life long road. But we remind ourselves and one another of the beautiful things still there in life to fight for and be happy about. Reminding ourselves of what we can still do and sometimes exploring new passions or “purpose” rather than focusing on what we now cant or struggle to do.

You have a very admirable positive view on things and inner-strength

Lots of love and best of wishes,

Corrine

[Stevek350]

Hi Corrine;

Yes I did stay in Engineering.

The Degree and Professional Status opened up a lot of doors to me career wise and I’ve had some great and not so great positions, but a lot better positions than I would have had without going to school. I think the studying saved my mental life and made me focus on getting better without stewing about the ‘why me’?
To get through schooling so soon, I was very lucky to have the support of fellow student friends and especially a wonderful patient, woman (future wife) that I really owe my life to.
Your new ‘hairdo’ rocks! I was thinking of doing that myself but my wife said my scars from the drainage tube and recent brain surgery would reveal an ugly scalp, unlike your smooth top.

[corrine]

Hi Stevek,

So glad you went for your degree and had so much support! It is also so wonderful you met your wife during such a hard time and she was there through your recovery journey. I wish to find such a supportive partner one day, worth the wait whenever they come! your right, it is a degree that opens many doors and even though I had many gruelling modules through my four years, it is all worth it!

Thankyou so much for the compliment I am enjoying it too, no regrets, feel a lot better now than partially bold. To be fair, it is a rather drastic move and unless you kinda have to, Id agree with your wife - scalps in general aren’t the prettiest of things! But if you gotta, might aswell work it.

I may have shed alot of the beautiful hair I was very proud of, but my bald head represents to me my journey to recovery, and so I am embracing it. Your scars, like my bald scalp, might not be ideal but they represent your journey too, so even though your not going to go skin head, they are a beautiful sign of your journey to embrace too

Best of wishes,

Corrine