Struggling with depression and anxiety after left occipital brain AVM diagnosis

Hi all!

My name is Corrine. I am 22 years old and in my final year of my masters engineering degree and live in the UK. I was diagnosed 3 weeks ago with a AVM situated on my left occipital lobe.

It all started with me getting migraines with aura more frequently than usual (2-3 times a week). I called into my doctors but was told to see a optician as it had been more than 3 years since my last eye test . Tests showed that despite having perfect eye health, I have lost my peripheral vision in the bottom right of my right eye. I was sent to a ophthalmologist for further testing with confirmed the results which led to me being sent for an MRI on 4/5/17.

A couple weeks before this MRI (week of 17th April 2017) migraines had developed from being regular to a full week of migraine. The worst migraine Iā€™ve ever experienced. Then they reduced to daily migraine attacks for the next 2 weeks. Since my diagnosis on the 8/5/17 I was informed by my ophthalmologist that I will have been refered for an urgent meeting with a neurosurgeon. It has been 3 weeks now of waiting despite having both my ophthalmologist and GP try to follow up, but that is NHS waiting times I guess. I tried to get more information from my ophthalmologist but he seems to not much more than what Iā€™ve already been told.

Due to the dizzy spells and migraines I had to defer my final year may exams which have been delayed to August for the time being. I still have my fourth year project to complete but Iā€™m struggling to focus and my depression is making it even harder to be motivated. I have a meeting with my head of department to discuss an extension.

I keep checking my post every day and waiting by the phone to hear from the neurosurgeon when Iā€™ll finally be able to get some more information. I have no idea about size of the AVM or what treatment is possible. I feel exhausted, I cant stand loud noises, I have dark squiggly lines jump at me when I go out for walks, I struggle focusing my vision at times and my migraines have become less fequent but seem to be replaced with dizziness.

I was so excited to finally finish my degree, enjoy my summer holidays and do whatever I want. Now I feel like Iā€™m living with gloves over my eyes with no idea what will happen. I donā€™t feel myself and Iā€™m watching all my friends be productive and all I do is lie around. I was already struggling with depression and anxiety before my diagnosis and was getting better with counselling and medication but now I feel like Iā€™ve taken 5 steps back in progress again.

Sorry for the rant, im not in the best mind set right now. It really it would be wonderful to hear from people who have had similar experiences? I feel so alone right now and it would be great to hear from others having a similar AVM story or symptoms?

Thank you for those you that have gotten this far, this is an amazing forum and ive appreciated reading so many stories already.

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Hi Corrine, John here from Canada. I have an AVM in the left temporal, diagnosed just over a year ago due to a bleed. Spent some time in the hospital, and then recovering at home, it was a long haul. I was fortunate to have my wife and children but found my world got really small as I basically stayed at home and didnā€™t want to go anywhere. My family encouraged me to get out and gradually I again became comfortable, but it took some time. I understand I may have been fairly grumpy as well. Iā€™ve learned lots about, AVMs, and myself. One big thing is patience, 6 months after my bleed I had gamma knife, and now 6 months later. While my friends didnā€™t understand what I was going through they were really supportive, I jut had to let themā€¦John

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I too have an avm(well, 2) one right behind the other in my left occipital lobe. I am going in for radiation on the 13th of June. I have already had two embolisations. The waiting is the most frustrating part. It may be different in the U.K. by herein the US you really have to be your own advocate.
I literally called repeatedly to get appointment times, and on three occasions went so far as to go down to the Neuro dept at the hospital I was dealing with to make and set appointments. Keep in mind I was always apologetic and polite and I think when you ask for copies of your films, they take notice. They may even ask if you are planning on going somewhere else. I, like you, do not like having my life on hold.
If you havenā€™t had an angiogram yet I would be pushing for that and make yourself known to them, but in a good way.
In the long run, this process is longer than any of us want, but you can use it as a learning experience and practice with patience. I started out with a seizure and a car accident 1st week of March 2016. I never thought I would still be waiting to get back to work more regularly.
Iā€™m 49 and I have 2 children, 10 and 13 and they are very active so this has really changed our whole family dynamic. Iā€™ll tell you what it has done thoughā€¦, it has made me appreciate every day as a gift. I did have a bleed 10 days after the car accident so I now have some deficiencies, but nothing thatā€™s going to stop me from livingā˜€ļø. Hopefully a while after the radiation I will be able to really get back to work.
Hang in there, keep your chin up, focus on the blessings not the struggle. We are here for you so rant away if need be.
Donā€™t be afraid to push the envelope a little to get appointments though, just make sure to be very polite and nice while doing thatā€¦lolā€¦ I will be keeping you in my prayers, so keep us posted.

Feel free to reach out with more questions too.
-Lorna

Corrine,

Welcome to the site. It is great to have you on board and I hope we can all help you fight your corner but be patient.

I was diagnosed with an AVM back in August last year and, rather like you, I spent weeks waiting for more information, for the phone to ring and set in the next appointment. I have to say it took AGES and youā€™ll do as well as you can not to live day by day, waiting for the phone to ring because it will take a long time and it really doesnā€™t help. Do whatever you can to keep your mind active on real life stuff that matters rather than hoping for the next step.

Having said that, if at any point you get worried about your condition, go straight to hospital if it seems acute, or go to see your GP if it is a more gradual decline. I have to say I had a mixed experience with my GP, as it is a rare condition, so sometimes it can feel that they canā€™t answer your questions or concerns but by the later weeks of my waiting, my GP was clearly on my side, provoking the hospital to get me further up the waiting list.

As you might imagine, on the NHS, every case is prioritised so that the hospital get to everyone in the right order ā€“ dealing with people in clearly dire circumstances first. Use your GP as your advocate if the hospital seem to drag their feet. My treatment took a very long time and I got as far as making a formal complaint, so use what tools seem most appropriate.

However, donā€™t worry too much. It will take some time and you will need to be patient as well as pushy.

My AVM was a dural arteriovenous fistula in my right occipital lobe, which has now been embolised (filled with glue).

Keep in touch. Weā€™re all with you.

Richard

Hi there John, Thank You so much for sharing your experience. You had to wait 6 months for treatment? Iā€™m already struggling to wait after 3 weeks, I sure will have a big development in patience by the end of this. How was your experience with the gamma knife treatment?

Im thankful that my mum and step dad are really supportive though Iā€™m struggling with how to calm down their worries when Iā€™m terrified deep down too. My fatherā€™s side of the family are not so tactful with being compassionate but Iā€™m trying to not let it effect me. Itā€™s hard to deal with when either people donā€™t take it seriously or look at me like Iā€™m a dead girl.

Was it apparent that you had a bleed from your MRI or was a CT scan needed? Iā€™m worried I may have had one but my Ophthalmologist may not have noticed it since he appeared to not to know too much about AVMs other than recognising it was thereā€¦

Thank you so much again, Corrine

Hi Lorna, Thank you so much for your reply and good wishes :slight_smile:

I am wondering what made you chose gamma radiation? I am glad to hear there wonā€™t be much longer to wait now to finally have treatment and hope for a swift recovery!

I am glad to hear I am not the only one pestering the hospital and doctors for me to be seen lol. I am planning to call in again tomorrow to see my doctor and ask how much it would cost for me to go private and tell her about the new symptoms Iā€™ve been getting (pain when I hear loud noises, squiggly lines jumping at me). I will definently ask if its possible for me to be ordered for a CT and angiogram asap for the time being even if I canā€™t be seen straight away. Having the report on my MRI also will be hopefully helpful for my case with my university head of department.

I am so sorry to hear about you being in a car accident and seizure, if finding out about the AVMā€™s wasnā€™t already enough! Iā€™m inspired by how positive you are and i hope i will see things the same way soon.

Iā€™m sorry it has been such a long haul for you in your recovery, wish my grandma could see this instead of complaining about me deferring my exams and end of year project. Your right though, Iā€™ve never appreciated living more than I do now. I used to feel so invincible and now i realise how delicate we are as humans and not to take things for granted so much.

Thank you again, Corrine

Hi Richard, Thank you for your reply and I am so grateful for this community! I felt so alone before and it feels good to hear from people personally who have been going through this all too.

I am glad Iā€™m not the only one who has gone a little crazy with the waiting. You are totally right, I need to try to keep my mind off it. Itā€™s hard when Iā€™m getting calls from family every day asking for updates on whether ive head back yet and how i am and voicing their worries. One side of the family is in panic mode and the other side is like ā€œwell if it was that serious you would have heard back right now, you need to focus on your education commitments and not excuse yourselfā€.

I feel so pathetic for not doing my exams on time and slacking so much in writing my final project report but I just donā€™t have it in me. I used to be able to do crazy all nighter shifts and work without a problem each day. Now I canā€™t even get myself to read a non-academic book. But reading others stories and knowing im not the only one who has struggled with coping with all this reminds me that Iā€™m not the only one.

I just canā€™t stand my life being on stand still. Seeing all my friends working on their revision for their exams or dissertations, getting ready for graduation. Going on nights out and drinking lots. Planning their summer holidays and looking forward to their grad jobs. I feel so unproductive and I hate not being in control of planning my life schedule. Hopefully Iā€™ll snap out of this self-pity-pit soon and I am looking forward to seeing my counsellor to vent a little more too :sweat_smile:.

My doctor has told me the same thing, and I do understand the logic that there will be many people in dire situations that will be higher up in the list. This will be a big developmental lesson in patience for me!

I was wondering how the embolism has worked for You? Did you have any side effects? Have you had any symptoms before treatment due to the AVM?

Sorry Iā€™m still in whiny mode, I will try my best to be better to talk to! Thank you so much for your kind words and the much needed reminder that everyone has had to wait and I will just have to keep pushing through!

Corrine

Corrine,

I had a number of symptoms before and after embolization. The later part of my story is here, with a link back to the beginning, when I felt just like youā€¦ My Update

Any questions, just ask.

Richard

Good morning Corrine,
Interestingly enough, I didnā€™t know about the AVM until I had the bleed 10 days after the car accident. The first hospital for the car accident was more of a birthing hospital so they assumed I missed s dose of anxiety medication which caused the seizure. When I had the bleed I went to the research university hospital which is a little farther but much bigger. They knew exactly what it was.

I chose the radiation because after the two embolisations, my Neuro surgeon felt that another bleed was just a matter of time if I didnā€™t have the AVM obliterated. Itā€™s too deep for traditional surgery and itā€™s right between vision and languageā€¦ two things I would like to keep, ā€¦ so radiation is the only other real option. Itā€™s very pinpointed and I believe it will put me back on the road to healthy. Itā€™s so important to trust the team you are working with. So far mine have been great and I really couldnā€™t ask for a better outcome as of right now. Iā€™ll let you know after the 13th, and give you the truth about what itā€™s like. Iā€™ll be praying for youā˜€ļøStay positive.

-Lorna

Yeah 6 months seemed a lot at the time but I had lots going on. The bleed was discovered via CT scan. I had to wait 6 weeks for a follow up after being released from the hospital in hoping the blood cleared, that was an MRI day. The doc then wanted another angio done prior to the decision to go gamma or craniotomy. That took a wait. Then a wait to see the gamma surgeon, and then to schedule. All in all I was happy and in pretty good health given all factors when I had gamma.

Great to have the support, and yes your support is like mine, really worried. I have had a 10 and 12 year old, now 11 and 13, who also were a little confused. Their dad who admittedly had a little swagger was suddenly not as bullet proof as I or they thought. The had never seen me sick or seen me cry, which I did when I explained to them the I was scared and that was alright. Now I think it has made us all stronger.

Iā€™m going to be off line for about a week but if you have any other questions feel free. You can see Iā€™m a fairly open book, particularly related to the whole AVM journey.

Take Care, John

@DickD @Lorna @JD12 replies and updates!

Richard I just got through reading it all and you sure have had a tough journey before finally getting treatment. Iā€™m so glad to hear that your embolism was successful, I wasnā€™t aware that embolism alone without GK or open surgery could fully treat the AVM. My thoughts are with you hoping that your dizzyness and other remaining symptoms subside soon.

Lorna I hope you have a successful radiation treatment and swift recovery, my thoughts and prayers are with you :slight_smile: Iā€™m glad to hear your story, I am nervous about whether my AVM will be treatable by open surgery but im glad to know it can still be treated successfully even if itā€™s not easy to access. I am excited to meet my team and finally hear about my options. Hearing your and everyoneā€™s replies has helped calm me down and keep me positive.

John I really appreciate your openness and Im happy you had so much support and grew closer with your family through this journey. It is scary accepting that we dont have full control and arenā€™t invincible but at the same time it makes you appreciate each good moment that much more. What made you chose radiation over craniotomy? Iā€™m glad your specialists were very thorough in testing you and determining the best course of treatment.

UPDATES

So yesterday I called into the hospital (Preston hospital) asking if there was any information on when I could possibly be seen. I was then told that the only files they had on the system were from the 26th last week. I then got referred to someone else who then told me that they had lost my files and when my doctor called in last week to try to push for me to be seen she had to resend my files. I was incredibly frustrated. I asked her how long she thought it would take me to be seen and I was told anything up to 17 weeks unless the consultant decides it is urgent when he gets round to seeing my reports.

I called in to have an emergency doctors appointment since my symptoms have gotten worse since last week. My doctor was really worried and said she and her assistant would be calling in to the hospital and make sure that the consultant sees both my MRI report and symptom records ASAP. Got a call at 2pm yesterday and was told by my doctor that she had gotten through to the neurology department and was assured that the consultant will be seeing my information the same day! So I should be hearing back within this week! Nagging for the win! A big relief knowing things are finally moving forward and being taken seriously.

I also had a meeting with my head of department at university bringing my MRI report and letters for evidence. He was so supportive, he assured me I am allowed to defer my project report to whenever I am well enough and the same with my exams - either August if im well enough or if not next year may. My project supervisor was also supportive of this. So atleast I dont have my university work to worry about for now and can focus on my health.

All in all things are looking up! And I feel positive although admittedly still a little terrified about hearing my options for treatment. Result! :grinning:

Thank you for all your support and i will keep you posted!

Another update

The doctor recieved the news today that my consultant at the hospital reviewed my files and has classified my case as ā€œurgentā€! meaning I should be seen within the next week since when I then called into the hospital I told there are very few urgent cases in the neurovascular department. Both exciting and terrifying but Iā€™m looking forward to getting some of my questions answered! :sweat_smile:

Corrine,

I agreeā€¦ exciting and a bit scary. Remember, I was labelled as ā€œurgentā€ for 2-3 months, so just make sure they continue to move you forwards urgently. Your GP seems very effective: use them if you need to, just as you did this week.

Good luck! Sounds really good progress.

Richard

Hi Corrine. Iā€™m so glad that you found this site and welcome. Having and living with an AVM can be a very lonely experience. But please take heart - you are not alone. All of us here are struggling with similar issues caused by AVM or related conditions. My own journey started when I was 12 and began to get ā€˜migrainesā€™ with vomiting. After 2 years of them getting increasingly worse and being on various meds (none of which worked) I was sent for a CT scan. The docs then found I had Hydrocephalus and needed urgent surgery to insert a Shunt. Roll on 15 years and another 2 operations to change my Shunt when it blocked I was offered an MRI and angiogram. This showed a large AVM in my Cerebellum. The damn thing is so deep that any treatment would be highly risky. So I have chosen to take my chances and live with it. Fortunately for me the deficits so far have not been very severe. But I understand that if you are suffering as you are it might be the way to go. Treatment options are generally surgery, embolization and gamma knife. Good luck.

Hi Corrine, I am Carey, my best advise is keep positive no matter what treatment you may be facing. I took had an AVM and not in anyway to scare you I had to have a craniotomy due to a burst. The doctors said it would take months to get back to ā€œnormalā€ if there really is such a thing. The burst occured in my left frontal loab, which caused me to have to learn how to read write and do math all over again. With strong support from my friends and family a return-to-work in one month my brain surgery occurred on December 5th 3 years ago I return to work on January 13th. No matter what medications that doctors give you I strongly suggest also looking for natural ways to get rid of your depression. And always remember everyday you put your feet on the floor is a great day and you can and weā€™ll get through this. Stay strong and try to be positive. And if you ever need to talk no youā€™re talking to a survivor.

Thank you Richard, your right i will have to make sure to keep on their backs if I dont hear anything in the next week or so. It is ridiculous that you had to wait for so long! I cannot wait to vote this week and hopefully our NHS system will get more funding ones the votes are in :muscle::muscle::muscle:

Corrine

Hi Lulu, That is such a long time to go without a diagnosis! I am glad to hear that you are managing well with any deficits and that your keeping in good spirits. Your right Iā€™m feeling much less alone once i found this site! I guess it is just frustrating when people ask me about graduation and i have to explain to them that ive had to defer it till im better. But this is hopefully a temporary struggle or atleast the symptoms are!

Thank you so much for your reply and sharing your story and your kind wishes.

Best wishes,

Corrine

Sorry for the long delay Corrine, I have been away in northern Manitoba and off line. The decision was really quite easy for me. I told the euro surgeon prior to the last angio that once he had all the results I would ask him what he would do and I would appreciate the honest answer. The decision appointment we discussed all, he looked at me and said that if it was him, he would go gamma. Decision made and he referred me to his partner who does the gamma. The reason being is that although mine is small it is quite deep, and would likely leave me with a number of effects, vision, high risk of seizures and a few others. Gamma, while still risk presented less risk. Of course the risk of a re-bleed is the piece that weighs heavy while waiting. So really the lad who would have done the craniotomy told me he would opt for gamma. I thought it was a no brainerā€¦.poor attempt at humour!

Hello Corrine,
I have liked your post but that feels a bit odd, itā€™s all I can do to say I empathise with you. Itā€™s almost exactly two years since I had a craniotomy to remove an AVM. It took 6 months from diagnosis to have surgery, I realise now this is relatively rapid in comparison to other people. I did hustle quite a lot to move things on. The time it took to be diagnosed was years though. I also experienced migraines in the world of what you described when I was your age and doing my degree. I am now 37. My experience, I experienced extreme migraines but moved house a lot and didnā€™t push with doctor to be diagnosed and actually initially hormone fluctuations were blamed and at 22 I decided to have a break from the pill and this is purely personal but I found my migraines happened less regularly and less extremely, however, 10 years later I started experiencing them again more regularly and intensely. I also manage another condition called endometriosis and this was blamed for a lot of migraine activity. However in 2014 I started to feel like I had a constant hangover, was sensitive to bright light, noise and was constantly tired, to a level that made me feel there was something very wrong. Initially I thought it was years of freelance film and theatre work catching up with me but then in Summer 2014 after an intense project I had a massive migraine and could not stop being sick, my partner called the doctor because he was so concerned. Eventually after continual patch ups and pain killer medication I had two massive seizures in December 2014 and the AVM was diagnosed.
I understand your feelings of watching your friends and feeling like they are all getting on with their lives, this is certainly how I felt and still feel very often. I certainly felt like my life was in suspended animation and it made me depressed, very depressed. I know looking back at the time of my degree I thought everything is about to start I have got to cling on and stay focused and well. I also felt like this when I was diagnosed a little over 10 years later. But everyoneā€™s life also takes different routes and with anything you it is worth accentuating the positive- you have found out about your AVM before reaching a critical point- you will see from other peopleā€™s experiences on this site how valuable this is. Itā€™s actually a great gift, I appreciate this might not feel like it to you. But do try to look at your situation objectively. It will pay dividends.
It is worth taking the long view on your situation now.
Iā€™m guessing as you are on a Masters, you have already acheived a degree. You are experiencing exceptional medical circumstances and it is worth communicating this to your tutor and making sure you keep up good communication with them or with another colleague in the department if they are not very receptive. You have good cards in your hand, but try to see things in the round and donā€™t get lost in in self diagnosis (internet searches) do do research into treatment but I have found itā€™s best to stay sanguine and do plan for how you want to make a stake in your future. This is a segue way in your route and really arenā€™t we all making it up as we go along? Above all trying to keep an open mind and an open heart is hard but worth trying to do,
L

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Hello Corrine,
I read your second post, thatā€™s all amazing news, the way I kept on the case with Consultants was by always having a file with me at appointments of letters, discharge notes and scan information if I could get it and having a list of questions prepared to talk through in the consultation. Also I made sure that I knew the name of the Consultants secretary and their contact details- this helps massively in navigating through outpatient diagnosis appointments. I then checked in with them a lot and kind of made my business their business. I was pushy and I took up a hobby to try to stay calm!
Keep on keeping on!
L