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AVM Survivors Network

Left occipital new symptoms, advice please


#1

Hi everyone, sorry to bother you all again but I need your advice. I’m at hospital after going to A&E last night and staying the night.

So the last week I have noticed some things: needle like head aches, I have been bumping into people and blocking people considerably more oftern that usual, been struggling to visually focus on things more than before.

On friday I felt really wiped out, staying in bed all day, this was the first time since my op I’ve felt so out of it. Only went to the gym once last week on monday so doesn’t make sense (3-4 times a week before) and didn’t push myself as much as I usually do.

Yesterday I felt completely burnt out, exactly the way I felt before my op when my AVM was extremely high flow and subsiquently causing brain damage. The back of my head and neck was hurting and what alarmed me to call 111 was my vision going in and out of focus being very blurry. When walking I felt nauseous and light headed when looking side to side to make up for my right visual field loss (result of stroke during embo earlier this year).

I am now at UCLH. Sight still blurry when moving my head or moving around. I had a CT scan during the night and results show I have had no bleed or heamorrhage. The nurses wanted to make me go home but then decided to let the day doctor team see me. They can then contact my neuro team to decide whether I should have my angiogram brought forward. Should I push for this? Do you think blurred vision could be relavent to my left occiptal AVM?

I haven’t had an angiogram since my embolisation (26/01/18) due to having over radiation during the embo due to stroke (in op) causing extensive hair loss. Plan is to have an angio in September to ensure my scalp is recovered and all is stabilised. I feel worried my AVM blood flow might be high again which might explain why I feel like I did pre-embo. Do you think this is rational or over-thinking? In your opinions do you think it makes sense to push to be seen by my neuro team even if the non-neuro docs decide not to bother since I’ve had no bleed?

Please let me know your opinions - I understand your not specialised medics but still would help assure me

Many thanks,

Corrine


#2

Hey,

Sorry to hear you’re not well. I think it’s right to get checked out. The needle headaches would worry me (don’t know why particularly, but they would) and the tiredness but then I do think you keep quite late hours, so maybe you should rein in what you’re trying to do.

I’ve just been telling @atul that severe tiredness can be a feature and to take it easy – possibly for months – so I think the same advice applies.reflecting on my own progress post embo I went downhill a bit at 6 months. So maybe this is reminding you that really you’re still in recovery.

I lost focus in my left eye the other day. I noticed it when driving at night, as there are so few other inputs when driving at night that it is easier to isolate the problem. I decided I had decent peripheral vision and sharp imagery in my right eye, so carried on home. During the day, I had been using cleaning fluids which said “in case of contact with eyes, wash out thoroughly with water” and I decided maybe I had got some in and not noticed, so washed left eye out thoroughly and went to bed but it could have been my brain getting upset at something I guess. I was fine in the morning, thank goodness!

Insist? Don’t know. Get checked out? Yes.

Good luck!

Richard


#3

Hi Richard, thankyou so much for your reply :heart:

Updates:

So last night at 11pmish I got told by the nurse that the CT scans were misread by the radiologist and the NHNN neurosurgeon double checked the scans and had just called in to confirm that the scans show that I’ve recently had/having a heamorrhage and that I’m being transported by ambulence straight to the NHNN. Well, the ambulence took forever, only got to the NHNN by 6am since there was a miscommunication apparently.

I have been put on “nil by mouth” since finding out last night including no water incase I have surgery. Had a MRI and MRA at 10am today and now waiting for my scans to be read so they have more information about the bleed to decide what the next step is. I am stable but still blurry vision, wiped out and back of head hurts with easy to find pulsating felt when touching the back of my head. Have a cannula attatched to a IV to get liquids in but still feel super thirsty plus they messed up with it so I bled out into the tube, it got clogged and then they had to switch tubes and “flush” the cannula which really hurt, wasnt prepared!

I am not sure what will happen regarding my AVM, might be forced to not be able to do GK and have a more invasive procedure if its not going to hold up the time for the GK to work. Trying to not worry about risk to my central vision.

The nurses almost told me to go home on saturday after looking at the incorrect CT report but thankfully I insisted that I want to see the doctors first and my worries about possible flow change even if there was no bleed so they let me stay. I still feel like its mad how we instinctively know when something isn’t right.

Haven’t spent all night with all the disruption with ambulance and then a really annoying patient sitting next to me bullying the nurses and just being a pain in general until I finally had enough and told her off - thankfully it worked and the nurses were relieved! Hopefully get some kip now until I get news. Groan. Family is on the way over so won’t be alone for long which will be a great comfort.

I am sorry to hear about your vision - but I am relieved to read that you are feeling ok now though. Definently something to keep track of and give a call to your consultants secutary about just to be on the safe side. How are you feeling today?

Love,

Corrine


#4

Hi Corrine,
I’m so sad to hear you have suffered a bleed, they are not a pleasant thing to have. I admire your positive attitude whilst you are going through all this. The song “what dosent kill you makes you stronger” springs to mind when I think about what you have gone through, you are one tough cookie. Sending you all my love and prays xx


#5

Well, it seems you know yourself quite well, so that’s great! Well done for insisting.

I’m good, thank you. You look after yourself.


#6

How are you doing today? Still in hospital I assume. How are you doing, though?

Best wishes

Richard


#7

Hey @Dick @Amanda13,

Thankyou both for your very kind and thoughtful messages :heart:

It’s been mixed feelings of relief and frustration. Great news is that I found out I didn’t have a heamorrhage and they misread the glue for blood - so big relief! Also good news in MRI and MRA scans showed my AVM has shrunk more than the last scans back in February/May. However had an eye test today which showed I was right in I have lost some vision in both eyes. My blurred vision is also still an issue with nausea and light headedness accompanied. Doing the visual field test completely wiped me out, for the first time I really struggled to get through the tests with how exhausting it was, usually it’s not fun but not a struggle.

They don’t seem to be bothered about finding out why these changes are happening. My consultant was saying I am ready to leave without further investigations and they plan to just leave things alone all together. They will ask the neuro-ophthalmologist to look into it further tomorrow since I wasn’t happy about leaving whilst ignoring it - especially since blurred vision will affect my ability to go out independantly safely (all easy whilst im here in a place no one will bump into me and indoors) and I’m worried about whether I could lose more vision.

I wanted them to do my angiogram sooner to see whether there has been a flow change through the AVM causing these issues but they still want to leave it till september. I get that there is radiation involved and has associated risk but… I just feel uneasy since we have already dont all the non-invasive scans they can do. I feel like because they see what they want to see on the scans in that the AVM is shrunk down in size they seem complacent now and want me to go home when we haven’t made any progress getting answers on my vision.

I feel they dont seem considerate to my feelings at all and I got no acknowledgement on how it must have felt to be told I have a heamorrhage and then casually told “oh no that was just a misreading” or that it isn’t an over-reaction for my vision to suddently regress after making positive progress since my embo. I know alot of us hear have felt the same frustration though so although I wish no one else experienced it, I know I’m not alone :tired_face:

Other than the sight issues and frustration, I am relieved about the good news. Also I have made some really lovely friends whilst at hospital which has really made my time alot better. Lovely having ladys here who really “get it” and just to natter with in general. Knowing all the porters and nurses and staff here is also very comforting seeing so many friendly and familiar faces. So it is certainly not all bad. Feel very fortunate in that.

Thankyou for your support and sorry for the long vent too - just a rollercoaster of feelings really!

Love

Corrine


#8

Corrine,

I don’t think the doctors are being complacent. I’m sure they are comfortable that there is nothing serious going on, so try to accept that. I’m equally sure that you’ve had way more radiation than is good for you this year, including the CT scan, and they are thinking about your long term health by deciding on whether they need to look any further.

I’ve no doubt that if you get any sudden or severe symptoms, you should do exactly as you did this week and go back for another assessment. But you know that.

The main thing is that there is nothing big going on. You need to recover from previous radiation and then I’m sure they’ll look again.

I’ve no idea what’s driving the focussing issue. I’d say keep an eye on that (pardon the pun) and if it gets worse or doesn’t improve, talk again to the doctor.

What I feel I know is that having an embolization seems like a really low impact, easy to get through thing and life resumes its normal pace pretty quickly. However, the reality is that my brain and your brain have been significantly re-plumbed – yours much more so, I think – so we really need to be sensible about staying hydrated, resting properly and allowing our bodies to catch up. Its serious stuff and a bit too easy to try to move on from.

Are you still thinking about being in Nottingham on Saturday or is that a step too far?

Look after yourself.

Lots of love,

Richard


#9

Hi Richard,

About the radiation exposure they have explained this too that their concern is radiation exposure which means they want to delay and that I have already been over exposed to radiation - hence the hair loss. It makes logical sense which is impossible to argue with.

I guess what I mean when I say “complacent” is that I feel they don’t seem to be concerned at all about my visual field loss (even if it isn’t significant) or the fact my sight has become suddently blurry and 5 days later hasn’t changed. I wouldn’t be as bothered if they had some sort of explaination or said they will keep an eye on it or that they believe it will improve with time. But barely aknowledging it at all just because they see no obvious reason as to why it has happened… that bothers me. My AVM may be stable but my vision isn’t. Atleast with the field loss I had a logical explanation and I was told it wouldn’t get worse, could only get better with time without further intervention or a bleed occuring.

If it was just the light headedness, dizzyness, headaches, the pulsating head or fatigue I’ve got I would feel totally reassured by the scan results. I would just accept its a matter of recovery and rest and I would have never been worried enough to call 111, would just drop my neuro-nurse an email. But this continued blurred vision which is new/foreign to me is frightening. Like even searching on this forum and online I can’t find an explanation for it. I think I can deal with a little more visual field loss if it was to regress a little more, even back to the point it was when I woke up from surgery. I can accept that I’m almost deaf in my left ear without worrying. But the thought of living my life in a blurry world forever… I simply cant get around without moving my head alot cause I need to compensate for the field loss and it would really suck.

I have been thinking today that maybe it could be a problem with my actual eyes and not my AVM. I will discuss this with the eye doc today - whether it could be my eyes have strained too much with adapting to my vision loss and increased movement or something else eye related. That would be an explaination atleast to allow me to process and know where I stand. Hopefully reassurance for me to know what to expect. So I hold hope I may get an explaination before being discharged.

As you can see my anxiety levels have hit the roof. Hopefully this will all pass and I can get back to feeling safe to go out independantly again.

For now I will have to cancel the Nottingham meet up. It hasnt really gotten much attention which I guess makes it less disappointing but would have loved to see you there!

Lots of love,

Corrine


#10

I completely understand. I would take up with the eye doc, definitely. I do think neurosurgery goes so far and then stops. Unless it is big enough for a neuro intervention to see and do something about, I think they count it as “non existent” when there must be something causing a symptom. But I guess if you can’t see the problem, you’ll struggle to do surgery on it.

I’ll see if I can get to London. I was planning to try to bump into you at one event rather than both. Count me “in” for London and I’ll confirm later.

Very best wishes always,

Richard


#11

Hopefully there will be some progress with the eye doctor and it’s something fixable. I just hope not to have to get my head around any more perminent visual impairment :crossed_fingers:

Awesome yes definently, I feel good about being able to get to the London event, whichever situation, if there is no progress I’ll just have to get mum to be my chaperone :laughing:

Haven’t heard from the eye doc today but been told I will hear back tomorrow. Hopefully updates soon!

Lots of love,

Corrine


#12

Update

I am going home today! Woo!

Conclusion is that they will be discussing my case in the board meeting on monday next week with the neuro-opthamologists and eye specialists present too. They will go through my scans, my field tests and discuss my eye focus issues indepth together. They will come to conclusions to determine a solution and be inviting me to the clinic within two weeks to discuss the conclusions and possibly more tests/examinations. I feel alot more reassured that they are going to be taking serious steps to help resolve this.

I will be discharged soon, mum is coming to get me and I will have to try to adapt to my vision for the time being. I feel alot less stressed out and excited to call my neuro vascular nurse next week for info on the board meeting :slight_smile: :raised_hands:

Thankyou so much for all your support :heart:

Lots of love,

Corrine


#13

That’s really good. I like the practice of multidisiplinary meetings in the NHS. Its also great that they have told you how they will explain the plan to you. I think you’re getting great care.

Mrs D a bit dubious about letting me come to London on 7th but I’ll work on her. Our son is off on a Duke of Edinburgh camp on 8th so she wants me around but I’m pretty sure we can organise things in time.

Well done! Hope to see you soon.

Richard


#14

Yes it is really great!! I am so happy about it :smiley:

I have also recieved a letter from the hospital " multidisciplinary assessment clinic focusing on visual function. You will be seen by members of the team including; a consultant neurologist, a trainee neurophycologist and an orthoptist for a visual field assessment. Dr Leff will summarise all the findings at the end of the clinic." in response to my neurologist referring me to Dr Leff the leading neurologist in research of hemianopia rehabilitation :heart_eyes: this is very exciting!!

Hope you manage to get the A-OK for coming along to London next saturday! Will be so good to see you :heart:

Wishing you a wonderful weekend,

Love,

Corrine