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AVM Survivors Network

New Member CVST stroke

Hi there and thank you for accepting me into the group.

Well to give you a bit of back ground with my situation. I woke 20 June 2019 with a severe headache which I put down to hay-fever, I took paracetamol, brufen, and a hay-fever tablet and continued with my day. It was just before tea time and the headache was much worse, I began vomiting and my husband put me to bed. Around 11.30pm I woke and wandered into my daughters bedroom opened her chest of drawers and vomited again. Husband didn’t know what was happening and put me back to bed. I woke again at 1.30am and was sick and collapsed on bedroom floor. My husband thought stroke and managed to get me to respond to FAST which I passed so he put me back to bed.

21 June 2019 I did not wake up an ambulance was called and I was taken straight to hospital. I was scanned and consultant confirmed I had suffered CVST stroke and he had never seen anything so big in 8 years. I was transferred to specialist hospital and my husband was introduced to neuro surgeons as they were not sure if surgery would be required. I also suffered extensive cerebral oedema.

My body accepted the medication and I was discharged on warfarin for life. There is no medical reason as to why I suffered such an extensive CVST.

At home I developed a excessive thirst were I was consuming on average 10 litres of fluid a day chomping on ice and knew that something was not right. At a follow up appointment my neurologist referred me to see endocrinologist who performed a water deprivation test. The test made me ill so they stopped on advice from consultant and I was made to feel like it was in my head. Anyway a couple of days later the hourly blood and urine results were back and it appeared they showed abnormalities which meant I was diagnosed with partial diabetes insipidus. I have been told this is a result of the pressure on the brain as well as my vision issues.

In December 2019 I began to hear a very loud pulsing noise in my left ear. I rang GP who seen me immediately and after checking my heart and confirming my blood pressure was slightly raised determined I was anxious and prescribed diazepam which I took but would still not sleep at night due to the sound and the thirst.

I mentioned the noise to neurologist who informed me they need to sort out the excessive drinking before they investigated whooshing noise. To cut a long story short I eventually started desmopressin and the thirst became managed on medication.

In June 2020 I had a CT aniogram which showed a small fistula. Neurologist states it was not big enough to rush me into hospital straight away and he would be discussing the findings of scans with neuro surgeons and interventional radiologists. I received a letter 25 June 2020 which told me after reviewing the scans I would need a DSA to diagnose and then after a telephone call with neurologist he explained because I was on warfarin they would enter artery through the wrist. They would then take a look and decide on best course of action. I would then need to go back and have same procedure when they were to fix it.

Since end of June the pulsatile tinnitus has stopped. It is still present on some occasions but not as loud as it was at the beginning. I have gone so tired and experience pain above my left eye and a fullness still in left ear. My teeth have started to chatter but randomly and for no apparent reason. I sometimes find myself wobbling on my feet and have fell and twisted ankles. My legs feel so weak and I feel like I have gone ten steps backwards and back were I was after being discharged from hospital.

I am still waiting for a call from NIR to discuss procedure and book me in but nothing so far. I have rang and spoke to stroke secretaries about the change in symptoms after discussing this online with an American Neuro surgeon who explained the fistula could close by itself or it could herald a sinister change in the venous drainage.

I am finding it all so draining not knowing and feeling like my life is on hold. I am sick of waiting now to be honest. I am scared and just want to move forward but because of virus everything seems to be delayed.

Another thing is I have now noticed that even a little walk will result in my entire head pulsing throbbing. I know my head is not right my eyes keep flashing and some days my vision is worse.

I have bitemporal hemianopia and currently awaiting a further test with ophthalmologist, therefore driving at the minute is out of the question. Wondering of anyone had experienced anything like this and still managed to keep their driving license.

Anyway apologies for the long post and not sure if I have done this right.

Thank you for reading and for any advice going forward.

@Mme

Welcome to AVM survivors!

I know Angela has had a CVST stroke, so I hope Angela will share some stuff with you. I had a dural arteriovenous fistula (“DAVF”) in the back of my head, pulsatile tinnitus and very weird sensations when walking or driving (or being driven) before my op (and for quite some time after my op, TBH).

It is very unlikely that you’ll be allowed to drive for a while, until the docs know what is what, but I managed to get permission to drive about two and a half months after having an operation. However, I never had a stroke. I think you have every reason to be optimistic but put driving out of your mind for 2020.

Very best wishes,

Richard

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@Mme Welcome fellow CVST and DAVF to the group- I am hopeful someone on here from the UK can recommend some drs for you . I too right before I got diagnosed with my DAVF was noticing when I got up my pulsing was worse and I would even black out after I would walk like ten steps. Then found out mine was retrograde…making my blood go backwards. My vision was bad when I had the clots and was bad from passing out - but I am worried maybe you have pressure on your optical nerve which can cause perm damage. You should see a good eye dr right away that can measure it . For some reason even when I had brain damage Stanford never took away my drivers license I dont know why they should have maybe they knew my husband was driving me everywhere.
hugs Angela

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@Mme

I may have misunderstood your post: did you take it upon yourself to talk to a US neuro online? I’d definitely get your neuro team to get the right resources in to help you (perhaps rather than doing it yourself) but the main thing is to drive them to look after you properly.

I definitely had retrograde flow – like Angela – and my Drs didn’t seem to think me urgent at all, so you have to keep driving them. I got my initial diagnosis in Aug 2016 and no treatment until April 2017. I made it through that time safely but it felt less safe each month that went by. All the way through January to March I told them as my symptoms changed.

If at any point you get significant symptoms, go straight to A&E. Another thing you might consider is recording your medical info, contacts etc on your mobile phone and/or getting a medical bracelet with your name, date of birth, spouse’s phone no and your NHS or hospital number on so they can be sure to get any records ASAP.

Otherwise just make sure they are moving things along. Ask the pointed questions and make sure you advocate for yourself. Keep notes and make sure to not miss out detail as to what your symptoms are. I think the main thing is to convince them you need help sooner rather than later.

Best wishes,

Richard

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Salford Royal NHS Foundation Trust, Salford/Manchester and the Walton Centre, Liverpool appear to be the main neurosurgery centres in the North West but each general practice will have a route to refer patients for neurosurgery.

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Your GP can definitely be a useful goad to the hospital, if you find one of the GPs in the practice who is sufficiently interested, motivated, etc. to help you. I found our GPs to be a mixed bag but once I found one who was keen to understand the slightly unusual patient, she was very helpful in messaging the hospital/ neurosurgery team and shoving a rocket in the right place.

Hi Angela so nice to talk to you again.

My vision has got really bad lately I have started seeing blue flashes and was wondering if it could be something pressing on my optic nerve. When they diagnosed diabetes insipidus and explained that the pressure had somehow managed to squash the pituitary gland casuing a reduction in adh hormone I researched and it appeared the optic chiasm and optic nerve were in close proximity to the pituitary gland. My neurologist believes now that the pressure has also caused damage to the optic tract and chiasm. My vision has not improved over the last twelve months and they took my driving license today after discussing with DVLA. I am awaiting a letter were it explains the reasoning behind their decision but I was told under no circumstances to drive.
January I still had clots and I am unsure how they are going to treat DAVF and worried that the clots could grow or cause another stroke if they need to sort out DAVF.
Anyway just a waiting game now until I hear from NIR.
Does anyone know what the average wait is for DSA in the UK?
Many thanks for reading.

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HI Richard

Thanks for your response.

In all honestly since I have been discharged I have self diagnosed myself and researched everything based on the symptoms I was experiencing.

After speaking with Angela I presumed this group was on facebook and asked to join an AVM support group. I noticed a post that a neuro surgeon/interventional radiologist would be answering any questions one evening so I just happened to mention that my pulsatile tinnitus had gotten pretty quiet and asked if fistula could close. He replied saying my question was very interesting and although the fistula could close on its own it could also mean there could be a more sinister venous drainage. After his response I again contacted the stroke secretaries who said they will chase the DSA scan up. But again I have heard nothing.
I don’t know what symptoms would result in a trip to A&E. I have recorded all my medical information on my iPhone and about to order a medical bracelet. I also carry a yellow CVST card with warfarin details on it.
I hang by my phone every day awaiting a call, it is so frustrating.
I am also awaiting a MRI on my pituitary gland to ensure no lesions on it but due to corona virus things have been put on back burner.
Thanks for responding

Lynsey

Hi Richard
I have made a friend on Whoosers facebook page who paid to see Dr Axon in Cambridge who suspected fistula and said she needed an Angiogram. Anyway he referred her to Walton and she had her CTA after me and has since discussed procedure and has her Angiogram Scheduled for 4.8.2020.
Were I am based in Cheshire I am under Stoke and unfortunately not heard a peep from them.

If you’re not getting where you want to, I would get some time with your GP to discuss your concerns and see if they will poke the right people. One of mine was very helpful in that way.

Not sure what you mean by NIR or DSA. Please expand.

I found the neurosurgeon I was under to be a bit of an arse but my treatment was all done by a top-notch consultant interventional radiologist for whom I have the utmost respect.

A&E would be only if you get signs of a stroke or anything that feels properly “significant”. Good that you’ve protected yourself nicely with the phone details and wristband. I think these are the things we can do to help ourselves.

@Mme 1) With your increased vision issue are you having headaches? 2) is it both eyes?
3) are you vomitting? If you are having 1 or 3 please go to A & E don’t wait until Sept
Has anyone prescribed you Acetazolamide?
What I am reading is once you begin to lose vision it can become permanent within days or weeks per health.harvard.edu

Please try to keep your blood pressure low until you can be seen to help with vision issue. And please if it gets worse go to emergency.

Now for your pituitary gland , by chance 1) do you have a lump on the back of your neck ?
I’ll have to wait until the am for the specific name but there is a non cancerous tumor that can grow on the pituitary gland that can cause issues- this occurred to my mom ( we have all weird stuff in my family it’s our normal :star_struck:)when I talk to her in the am I’ll get the name.

What is a DSA?
If they take away your drivers license do they provide you a service for rides? Here in the USA for our people who are disabled & seniors there are free programs that are provided to those that make below a certain level free rides to their appointments, and now more communities are starting to offer free or subsidized transportation for disabled and seniors.

Angela

Yes, for hospital appointments you can get a patient transport ambulance if you really can’t get there; otherwise a taxi would do it. Re being able to get to work if one is permanently left with a deficit, there is a scheme called “Access To Work”.

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Hi Angela, hope you are well.

I do suffer with intermittent headaches and when discussed with Neurologist he did not seem to concerned, I suppose part of CVST. No vomiting, and no one prescribed Acetazolamide.

I think over the weekend my blood pressure was raised after the DVLA information and I had a very bad headache but took pain killers and went to bed.

I cant feel any lump on the back of my neck, I presume the pituitary gland was damaged as result of the pressure which in turn caused the diabetes insipidus.

Sorry DSA is digital subtraction angiogram. DVLA has listed in their letter that I have hemi-spatial neglect, therefore not fit for driving. My driving license has been posted back to them and I have been told to wait and see the outcome after the ophthalmologist appointment in September.

I am hoping corona virus cases don’t rise too much were it effects hospital appointments etc. I am so desperate to move forward.

Lynsey

I am unsure how long is too long when waiting for the angiogram ? The CT that found fistula was on 14 June 2020, the consultant discussed the scans with Neuro Interventional radiologists and dictated a letter on 25 June to tell me a neuro interventional radiologist would be in touch in due course to discuss procedure and book appointment. So far I have heard nothing.

Sorry for my abbreviations. NIR - neuro interventional radiologist and DSA - digital subtraction angiogram.

Do you mind me asking which hospital you were under ?

Lynsey