Three years ago today I was diagnosed with Cerebral Venous Sinus Thrombosis, which is a rare condition caused by blood clots in the brain. This clot keeps blood from draining out of the brain and, as a result, pressure builds up in the blood vessels. It occurs primarily in women of child bearing age and, like any form of blood clot, can be fatal. Yet despite this possibility, there is very little research surrounding the condition. For many doctors it’s entirely unheard of. In fact, it took almost two weeks for my diagnosis to be reached and it was found by chance. Three GP’s, multiple hospital trips and several calls to 111 as I received multiple misdiagnoses and my condition deteriorated. If I hadn’t been referred for a CT scan on the off chance that I had hit my head while collapsing multiple times, I likely wouldn’t be here today. I was incredibly lucky. But while my particular condition is very rare, what’s not so unheard of are blood clots in general. In fact, we are all likely to know somebody who has been affected by blood clots of some kind. They could happen to anybody, at any time, in any part of their body. Just a few months ago there was an uproar surrounding the new vaccine and its contribution towards blood clots. So why is the knowledge of how they are more frequently caused so uncommon? Why do we not all know the warning signs?There are so many day to day factors that can contribute towards blood clots and, while they cannot always be avoided, there are a variety of things you can do to minimise your risk. One of the biggest risk factors recently has been inactivity. In particular, the rise of homeworking has contributed to thousands of individuals spending far less time on their feet. So why, when every SIX seconds somebody around then world dies of a thrombosis related cause, do we not know more about these conditions? I cannot stress enough how absolutely crucial it is to familiarise yourself with the risk factors associated with thrombosis. I have attached some images here with key information and would encourage everybody to take a look here: https://thrombosisuk.org/ So, in the spirit of getting up on our feet and keeping ourselves active, I’m challenging myself to walk, run or swim 100 miles in October in order to raise funds and awareness for Thrombosis UK, helping them with their invaluable research. I’ll be tracking my progress using my fitness watch. So for each day, I will update my progress and would also welcome any donations towards this worthwhile cause, no matter how small. https://www.justgiving.com/fundraising/kimlee1807
Thank you if you managed to get this far. X
Thank you to Kimberley Lee for her action in support of Thrombosis UK. Many, especially young girls are suffering from CVST with various intensity and side effects. Sadly doctors and A&Es lack the necessary knowledge to make the right diagnosis. Since my daughter was diagnosed, I have been reading many stories of thrombosis on a great Facebook group where patients or their relatives come to share their experience or ask questions. Within the short time I have known about this Facebook Group I have seen nearly 20 cases of CVST in UK. To me, this is not what I call rare. I did an unofficial poll that showed a majority of cases were related to contraceptive pills.
I therefore continue to wonder why more tests are not done before prescribing these contraceptive pills. They are genetic predispositions that can be easily detected. When one girl is treated for CVST, why no one even ask about the siblings? Contraceptive pills brought a major freedom to girls. This should not be at the cost of their health. They have to be carefully prescribed and I have strong reserves against oestrogen contraceptive prescribe for aesthetic purposes.
My daughter hasn’t still been tested as this should have been done before she was prescribed blood thinners. She had several CT scans before they diagnosed her, she was told CT scans were safer than MRI. From my understanding and consultation with renown professors, and Angio MRI is what she needed. MRI doesn’t expose to Xrays.
Bottom line, there is much to be done to avoid these girls lives to become a nightmare. They can’t be messed around like that. If there is one area where Artificial Intelligence should find its way is in emergency diagnosis. Give the algorithm all the patient’s symptoms and the machine can easily process to bring out the possible causes. As simple as that. No need to send them back home for a migraine.
You can read my daughter’s story here. She has been very lucky as the blood thinners have helped her live a normal life so far.
Other testimonies :
“Pretty new to the group. Was diagnosed July 10 with multiple blood clots to both sides of the brain/Sinus. (contributing factor oral contraceptives) I have had no follow up scans of any type since I was in the hospital. When and what type of scans should I be getting, if any?Neurologist is maybe planning an MR Venography sometime in November after my next appointment. He said it’s pointless to do the imaging too soon. I just feel ignorant as I read all of your posts when discussing all the different scans/tests you’re having done. I try to read and look up things talked about in these posts, however reading is difficult for me since this diagnosis. Is there any recommendations of what I should be asking my neurologist for? Or is it as he has said and just too early yet? I admit I am not a patient person.“
“I was diagnosed on August 9th and on that day I started taking Eliquis. I’m sure like some others, I’ve been experiencing hair loss, weight gain or zero weight loss (even when eating right and working out). I’ve contacted my hematologist too see what, if any, other options may be available. Any Googling I have done has proved to be fruitless. Any body experiencing the same side effects? If so, has anything helped? Vitamins, supplements, different prescription, etc.”
“I am fairly new to this group. I joined back in April after a 3 weeks stint in the ICU.. my CVST was unfortunately brought on by the J & J Vaccine that I received 2 weeks prior to my first symptom..I was #7 in the US (aren’t I lucky). This has probably been one of the scariest things I’ve ever been though and I’m still dealing with it daily.. after 2 thrombectomies and 4 rounds of plasmapheresis my clots are still very much there. I am hoping they will dissolve but my haematologist is stil”l not sure.. this stuff is scary, and the headaches are no joke.. I’m glad to see so many people come out on the other end.. gives me hope that I will be able to go back to some normalcy one day.“
“I was diagnosed on August 9th and on that day I started taking Eliquis. I’m sure like some others, I’ve been experiencing hair loss, weight gain or zero weight loss (even when eating right and working out). I’ve contacted my haematologist to see what, if any, other options may be available. Any Googling I have done has proved to be fruitless. Any body experiencing the same side effects? If so, has anything helped? Vitamins, supplements, different prescription, etc.“
“Anyone in the U.K. – I was told my CVST was probably caused by the pill. My neurologist wants to take me off blood thinners after my next scan as the clots are nearly all gone, and then do a thrombosis blood test to check for clotting factors. However I was wondering if anyone has had any blood tests done whilst still on blood thinners and were these done at your GP by a nurse or did you have to be referred for these? I’m petrified I’ll be taken off the blood thinners and the time between being taken off the medication and the blood test, have another clot!“
“7 months to the day I was admitted with my brain clot CVST…I was hospitalised twice … Headache all day with a pillow behind my head..but I walked every day since getting out of hospital ( slow 2mph to start ) then I got faster & faster, fitter & fitter… Clot was massive ( extensive ) now it’s gone and I’ve never been fitter or healthier..I don’t know who needs to hear this but things WILL improve.. today I climbed Slieve Donard and made it to the top“
“I’m about a year post diagnosis and on Eliquis. My migraines had largely subsided but the past few weeks have been really intense again. I fainted this morning and had some blurry vision. Due for my year MRV next week (appt is 10/08). Should I go to the ED or stick it out til then? I’m very worried. It feels like what was happening before I was diagnosed…“
“Hello there my daughter was 13 diagnosed with cvst in 2018 was on lovenox injections for a year along with diamox and topamax all her clots cleared except one small area, she was doing very well and was able to come off all her meds, fast forward to a few weeks ago she was hospitalized with papela edema severe headaches worse than her chronic headaches she normally has and intracranial hypertension now she is back on topamax“
“Hi everyone. I’m wondering if anyone is struggling with their mental health. I was diagnosed on March 31st 2021. I actually was feeling ok for a bit. However, the heat and humidity of a Midwest summer has turned this into something I feel like I have to survive every day. My energy is depleted, my motivation is non-existent, and this is a really foreign feeling. I am naturally happy, optimistic, and energetic. Honestly, I feel lost. My scans haven’t changed since diagnosis. My anxiety is through the roof, and I’m feeling depression creeping in. Note: I see a wonderful therapist and am on medication. Has anyone gone through this? Did it get better? I’m a naturally clean person and love deep cleaning our house – it’s cathartic. But I barely have the energy to vacuum. I’m sad, frustrated, I have a constant headache and I feel like no one actually understands the stress this diagnosis comes with. I think I’m just looking for suggestions, support, anything… thank you.“
“I have CONSTANT head pressure intracranial pressure MEMORY deficit pain behind ear BLURRY vision every time while lying sitting or standing… I have done my brain mri brain mra that were normal but not mrv… I think mrv actually tells us about intracranial pressure… should I force doctor to prescribe MRV BRAIN.. PLEASE SUGGEST ME PLEASE?”
“New to the group. I was diagnosed with CVST on 7/2/21. I went to the ER after experiencing a migraine complicated with a flashing pinwheel out of my right eye and loss of depth perception. I became confused and also suffered a seizure while on my way to the hospital. MRI/MRV revealed CVST. I immediately concluded it was from long term oral contraceptives – about 32 years. Ironically enough, for almost the last 20 years, I had been taking the 90 day pill to help control my migraines. In an effort to keep this post short, I’m going to sum things up – I have since had 3 subsequent hospital admissions – one related to CVST and two for diverticulitis. One case was left sided and the other was right sided. In addition, I have also been diagnosed with thoracic outlet syndrome. My symptoms for that are pain, numbness, tingling and weakness in the arms and hands. Pending the results of my next MRI on Oct 5, I am scheduled for a hemicolectomy on Nov 10. This means I need to come off warfarin for 5 days prior to the procedure. My doctors call me complicated. Before July 2, I was a healthy 47 year old woman. Never had covid to my knowledge and was vaccinated back in March. I’ve been feeling pretty good the last couple of weeks, though I’m still not myself. I’m currently on warfarin, topamax, serequel and trazadone. Prior to my blood clot, I slept terribly. On my current meds, I sleep great! I don’t feel too groggy in the morning and my migraines have been under control since about Aug 1. I’m going to PT for the weakness in my arms and trying to start working again (I’m self employed) and slowly starting to do housework again. Has anyone else had unrelated diagnoses come up while being treated for CVST? Has anyone had to discontinue their blood thinner so early during treatment for a surgery? Has anyone suffered a seizure with their clot? Can I hope that it’s one and done or will I need to be on seizure meds long term? So far they told me 6 months which also means I was told I couldn’t drive as well.COVID-19 vaccines go through many tests for safety and effectiveness and are then monitored closely.Source: World Health OrganizationGet Vaccine Info.“
“No worsening eye swelling clot bigger than when diagnosed 3 months ago pain is increasing and i’m having fewer good days dr won’t do anything to help as the paps haven’t changed enough, I know i’m not going to die but it feels like i’m being brushed off and sent home to suffer when i know i’m worse off than i initially was 3 months back advice? anything you’d advocate for?“
And many many more cases at different levels of pain.
Here is the result of the unofficial poll on the Facebook Cerebral Venous Sinus Thrombosis Support page .
Wednesday October 13 is WorldThrombosisDay.
You can join Thrombosis UK on this global awareness and learning day for the the launch of the National Thrombosis Survey, 10:00-11:30 BST.
With presentations, discussion and opportunity to ask questions to the panel, register now to hear more on hospital associated thrombosis – What have we learned, what more can we do?
Register free of charge: https://lnkd.in/dR-P-vA4