Struggling with depression and anxiety after left occipital brain AVM diagnosis

Hello Corrine,

If you can read anything else at the moment it’s worth reading these, I read all of them during my diagnosis and waiting for my treatment period,all but the last one, I heard this in chapters read on Radio 4:

Saturday -Ian Mc Ewan
The Alchemist Paulo Coehlo
The Pilgrimage -Paulo Coehlo
The Star Rover- Jack London
How I escaped my certain Fate- Stewart Lee
The Doors of Perception- Aldous Huxley
Acid Dreams: A complete Social History of LSD-Martin A. Lee and Bruce Shlain

Do no harm- Henry Marsh- I’m pretty sure this is still on the BBC I player.
All of these helped, with depression, dealing with Doctors dealing with me, thinking and non linear thinking, understanding my brain understanding what brain and body do. The last may seem odd, but Doors of Perception is a great piece of writing. Stewart Lee’s book is great on the way we dissect our choices and on making your way, I think he’s funny but it’s a particular flavour

I know its hard and i can personally understand how you feel battling these issues…BUT please stay strong and keep the faith that there is light at the end of the tunnel.

We are all here to support eachother as best as we can but if you feel things are getting really tough please seek medical advice as there may be ways that may help you overcome this battle just that little bit easier… God bless!

No problem at all. I wish you all the best.

Lulu

Corrine,
First of all, look at your supporters here!
Yes, it IS scary finding out about such an unusual brain issue that you have. HERE, though, you are NOT ALONE. Pray’s God this AVM support group is here. Way, way back, @ 1979, when I was 18 years old in college, I found out that I had a ‘5’ AVM! Back then, it was somewhat of a new problem, and for over a decade, I could not even find ANYONE who had what I had. WOW, did I felt ALONE. What I am trying to say is that even though you have this issue, the medical technology is SO MUCH MORE ADVANCE then the older days, and so much CAN BE DONE w/AVM now!
GOOD, GOOD LUCK, and May God Be With YOU!!!
Lisa

Hi Carely,

Sorry for such a late reply. I’ve been so emotionally up and down recently and been focusing on my mental health. You are right, all I can do is try to stay positive and focus on enjoying life the best I can right in the here and now. I am really happy to hear that you are getting back to work now and things are looking up after such a tough journey. My biggest fear is losing any more of my eye sight but I can’t focus on things I have no control over right now. Thank you so much, for your positive and bright perspective on things. Don’t know what I’d do without this community.

Sending love and hugs your way!

Corrine

Hi John,

Haha I might steal that pun for the future! I hope you had a good trip, I’m ashamed to day I had to use Google to figure out where Manitoba was :confounded: hopefully once things are better I can go and see more of the world! It’s good to hear the specialists were all very confident in agreement with your treatment choice - I hope to have the same, I am eager to know what options will offer the least risk. My migraines have come back to almost daily again but I’m making the most of the time inbetween- learning how to play the ukulele and spending time with loved ones.

Corrine

No worries Corrine, Manitoba is certainly not the best known Canadian province but a great place to live, you just need to make friends with winter!Sorry to hear about the migraines and I hope your able to get some relief. I look forward to hearing how things are going. Take Care, John.

I have all of them all the time. My eyes go in and out too. I can’t work no more, and many days I can’t do nothing but stay in a dark room. Doctors don’t know what to do about it now.

UPDATE

I’m sorry everyone for being MIA and not replying to everyone! I’ve been kind of an emotional wreck and been avoiding talking about it all. I decided to go private to see the same consultant I was refered to on the NHS. It’s amazing how quickly you get seen when your paying £250 a meeting.

Saw the Consultant yesterday. I wish I could say I feel more positive and relieved after the consultation. I’m left feeling kind of empty. So he told me all i already know about what an AVM is and where mine is located and what the usual options are for treatment. Then he showed me the MRI scans, and I realised how large it is. He confirmed my feild of view loss on the lower right quater is due to brain damage to my LHS occipital lobe. He told me he believes it is 4.5-5.5 cm.He told me he confirmed Spetzler-Martin AVM grading system he believes my AVM is a 4:

Size = 2 (potentially 3 but a angiogram is needed to confirm accurately)
Eloquence = 1
Drainage = 1

He believes my AVM would be best treated with several embos to shrink it followed by radiation surgery. He believes open surgery would inevitably make me lose more if not all of my eye sight on my right hand feild of view. He said the risk of losing more eye sight with embos is there but less than open surgery. He has referred me to a neurovascular surgeon that he knows personally at UCL hospital in London for me to see privately. I can then request for my angiogram and following treatment to be done on the NHS. I will know more information once I’ve had my angiogram.

He said there is considerable risk in leaving the AVM on having further brain damage. But on the positive side he is confidence from seeing the MRI scan so far that it is treatable.

I’m glad I went to the appointment with my mum and the neurosurgeon gave some words of reassurance to her.

Something odd I found though is he said it is not certain that my migraines are due to the AVM. I can’t help but disagree and hope he is wrong. It just seems too much of a coincidence that around the time the AVM developed to the point of brain damage that my migraines became more frequent. He said he isnt sure that even after my AVM is gone that the migraines will stop or reduce. Has anyone else been told this?

Thank you everyone for your support and sharing your experiences. I will reply to each one of you as soon as I can. You all have helped me feel less alone and filled my heart with gratitude and love for you all.

Corrine :kissing_smiling_eyes:

Corrine

Its good to hear from you! Embos + gamma will be a long journey but I look upon craniotomy as scary, so I would be more comfortable with your “plan”.

I think it is fair to say that the neuro may not fix everything. Mine warned that his focus was to address my stroke risk, I might still have pulsatile tinnitus or other symptoms. I agree that the migraines feel linked… he’s just warning they might not be.

Great to hear from you!

Richard

Hello Corrine, it’s good that you have gotten a bit more information and great that you have a referral to UCL. Keep us posted and great to hear from you!
Lx

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Hi Laura,

Sorry for such a late reply. I really appreciate your messages and compassion. I’ve wanted to properly reply sooner, I’ve just been an emotional wreck to be honest with you. Things have been very up and down. Thankyou for sharing your experience, Im glad things are looking up for you and that I’m not the only one with the depression.

Have your migraines reduced since your craneotomy? How has your recovery been?

Yes I’m really struggling with seeing everyone around me move on with their lives. I completed my masters courses however I have yet to do my final exams or write up my completed research for my dissertation report. I’m not too worried about that though. It is just so much to handle, accepting that it will be 1-2 years if I’m lucky before I am done with treatment. I want my independence, I want to move to the next stage of my life - my own place, career. But it is hard accepting moving home, dealing witj my parents panic and being treated like a wounded bird. I’m moving back from my university town, and i have few friends back in my home town. And my boyfriend has just broken up with me because he found me too much… I’m struggling to cope with everything. I’m just going backwards rather than forwards. The degree I’ve worked so hard towards is worthless until I’m well enough to use it.

Once I’m done with the havoc of moving out of my uni flat and moved back home I will take time to look at the books you recommended. I need a light at the end of the tunnel soon and hopefully reading some positive books will help me in the mean time.

You are right, things could be worse. I know I am lucky that my condition is treatable before i lose any more eyesight or worse… I’m being ungrateful and negative. Hopefully the adaptation to being back home will be ok.

Hopefully I can message you again in better spirits soon!

Love, Corrine

Thankyou Adrian,

I hope there will be an inkling of light at the end of the tunnel soon. I was hoping my first consultation would be a positive experience for me, but I’m still getting my head around it all. I was really hoping for a craneotomy and recovery within a year (very optimistic I know). However knowing now it will be a slower process is hard to come round to. Antidepressants haven’t helped, its been a few weeks since I’ve had the dose increased but im still a wreck. Hopefully getting another counsellor once i move back home will help me cope better.

Thankyou so much for your wishes, how is everything on your end?

Love and good wishes,

Corrine

Thankyou so much Lisa,

You are right I am so lucky that there are options for treatment available and that technology has allowed a platform for us all to communicate and share our experiences and support. Thankyou for giving me some perspective. Things will get better eventually, just need to keep pushing forward!

Love,

Corrine

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Hi Donnel,

I’m sorry this is happening to you too! What medications have you tried so far? It really is horrible not being able to work and not even be able to do the small things some days. Its hard not to feel depressed when your in this position. I’m here to talk whenever if you’d like, I know it is a hard place to be in. I hope the doctors find a plan to help give you some relief soon.

Thinking of you,

Love

Corrine

Hi Richard,

To be honest with you, I find my plan more scary. I was hoping for a more straight forward/relatively faster plan of action and to hear a craneotomy would be a safer bet. But your right many people would be happier with my plan and I need to look on the bright side.

You are right, there isn’t a promise that the migraines go though i sure hope they do! Just need to focus on being well again, both physically and mentally. And be more prepared for changes in things from my expectations.

Great to hear from you too!

Corrine

VERY WELL SAID, Corrine!

Remember nothing is impossible and you may very well be okay within a year after having surgery if thats where it ends up…all good on my end i guess still living day to day thanking God im alive to help others like yourself go through what i went through… God bless!

Hello Corrine,
Don’t apologise!
It sounds like you are truly on the rollercoaster. In answer to your question, I have occasional migraines, but they are different and far less regular and I can usually spot the signs so I know what to do- usually take painkillers, anti sickness medication and take myself off to a dark room but in terms of frequency, it’s more than half the number I was getting pre diagnosis. I can also anticipate what is likely to bring them- tiredness, heat, sugar levels and dehydration. I try very hard to avoid the situation where this happens but in my line of work it is a difficult balance, I am freelance and it’s about being quite hardline about food and breaks.

I don’t look at recovery as over, I think of it as a continuous process, the intensive recovery period was really hard, because to look at I didn’t look very different pre op to post op, it’s a real issue. People need to see a missing limb or a discernible deficit almost to accept or understand you’re ill- or at least that was my experience, it was a hard time. But I was lucky enough to have an understanding employer and my family did care for me as my partner was away working on an important contract in his career. It was a weird set of circumstances.

I was angered initially by friend’s reactions and I also found out I was going through the menopause which is kind of how I think all of this came to a head- massive hormone fluctuations and migraine activity. I have lost a few friends, I do feel like this period and the period running up to diagnosis were a kind of crucible, it was a bit of a forest fire of friendships. I do feel though that it was no bad thing, the relationships that ended hard reached a point where they weren’t working very well. When it came to the choice about how I wanted to use the energy I had I didn’t want to spend it on them and I prioritised my family partner and a few other friends who were the right energy to be around.

In terms of your degree and education I would argue that you have enriched your mind and that truly can’t be taken away from you, a degree in the classical sense is about learning how to learn and creating a broadly understood level of qualification among scholars. The collation and synthesis of information that you have learnt how to do and the knowledge you have picked up cannot be taken from you as a skillset . You can’t unsee or unread information you have read, I always tell myself this, it lays dormant and it will come back when you need it. I see my mind as a series of interconnecting rooms that it has taken time to furnish, this helps a good deal. It reassures me. I also take a non linear attitude to time in the sense that other things happen while you are making plans to do something else. I used to get very hung up about not having 'made it ’ in my career by 27, actually this is nonsense, the ‘it’ by that age is a name and naming and being identified as one thing does not leave a lot of room to change or transform. The way to have a long lasting career is to change and transform and recognising these moments and turning them to your advantage. There is every good chance that you will have a long lasting career, perhaps see this as an opportunity to develop something different, this time, 1-2 years will not be wasted, it’s a time of transformation and transition, if you are open to it you will learn some amazing things
I hope that helps you,
Lx

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For a while, I could not connect w/AVM SN. I believe I got the issue resolved.

YA HOO!!!

Lisa