VTE post thrombotic

[Holliemorris]

hi, in may april 2021, i was diagnosed with bilateral multiple Pulmonary embolisms in both of my lungs, prodominantly bottom lobe and DVT of the left leg (very big DVT half my leg vein was completely covered) however i have been sufferening with swelling, discolouration and seizing legs. I wear conpression stockings everyday for the rest of my life however i came off blood thinners last year. Ive noticed when its my time of the month or my feet are cold i really suffer with my leg, to the point the pain takes my breath away and i feel faint.. i use a hot water bottle every night. If i dont i suffer the next day. However today i was wondering for the pain during the day can i use deep heat on my leg? I went to buy some but wasnt sure whether it was safe to use with having blood clots in the past?

Thank you

[SelfCoagucheck]

I would more likely talk to the doctor about it, get a check make sure all is ok

[rokis]

have you looked into post thrombotic syndrome? I had a PE and DVT and im now on life long meds, but soon after my last DVT I started noticing that in certain situations my right calf would feel as if I had DVT symptoms!

I don't know if heat helps in that case, but at least with me I know that if I keep my leg warm and muscle relaxed, it gets better.

I wish I could be of more help, let me know how you get on!!

[Holliemorris in reply to rokis]

thank you, yea ive been trying for the past year and a half to get a post thrombotic syndrome diagnosis, however the hospital and doctors are refusing. I had an appointment in newcastle in may with haematology and vascular surgeon as theyve said i shouldnt be struggling the way i am, but this got cancelled. So im at a loss of what to do as im from cumbria and its difficult to get seen over in RVI, however that hospital is the only one that was able to treat me, during the time of my blood clots😭

But thank you, i use a hot water bottle every night other wise i suffer the next day if i dont, even when i shower my right leg is blue/red/purple and swollen, whereas my left leg is normal. It is very strange!

Will keep you updated, thank you again!😌

[rokis in reply to Holliemorris]

oh wow!! That must be very frustrating, I am very sorry. What I would say (and it might sound a bit cheeky but it's in your best interest!) When you see these specialists next I would suggest that "you've been told that it could possibly be post thrombotic syndrome" just so they can take you a bit more seriously. It might not be that after all, but if your symptoms match and you had both a PE and DVT originating from that calf, I would really push to have that diagnosis considered, even if it means that "you've been told".

Sometimes you really need to force things to go your way, and you know yourself and your symptoms better than all of them!!

[Suebo2 Moderator]

I agree with the above comments , but as a thrombosis nurse I would add a couple more:

Its important to understand why you had the clots in the first place as that can guide subsequent treatment - for example if caused by a clear provoking factor (operation etc) then stopping your medication for clots is not unreasonable

However, if you have ongoing risks you certainly need a review of your situation

It’s very important that you chase up your cancelled appointments.

DVTs can damage the valves in your veins which normally prevent blood flowing back to your feet when you stand up - hence the need for compression hosiery - if your DVT was at the top of your leg, for example, you might (might) benefit from seeing a vascular surgeon who may be able to help you out. Certainly in Bristol these interventions are fine if appropriate for the patient.

Also, please remember that you are also potentially at risk of further clots and please seek advice re this.

So, in short - ensure that you DO have a follow up soon.

Take care and good luck

[Holliemorris in reply to Suebo2]

thank you sue! Yeah i was pregnant at the time of my clots, however i had covid in my pregnancy and have a family history of clots. They have ran blood tests and said i have no blood disorders or anything. The extent of my clots meant i needed and IVC filter put in!

I will definately be following it up, as this isnt the first time they have cancelled my appointments and left me.

My DVT was in fact from my knee cap up to my groin, in a vein they said wasnt very common however i cannot remember the name of this.

Shame i cannot come to bristol for my care! Ive had a lot of issues with getting thrombosis nurses to listen to me they just wanna pass me off.

Thank you for taking your time to reply to me and giving me advice! I really appreciate it!

Take care too😌

[Holliemorris in reply to Suebo2]

it was also something called femeral vein? However it is spelt, i could walk or use my leg for 4 months, it had seized up badly, i had to bum shuffle everywhere it was the worst pain ive ever felt and ive had 2 children x

[hollyhobbi]

why are you not on blood thinners for life? I’ve had two dvts and am on them for life. I also know two other people who had pes and they are both on blood thinners for life?

[Summer133 in reply to hollyhobbi]

Hi I had a PE in January 2023 and now on blood thinners for life.

How are you coping with them, just with side effects of internal bleeding and the brain scares me but I have no choice but to keep taking them..

On one hand if I dont take them I have a risk of blood clots and on the other if I do take them then I have a risk of internal bleeding..both life threatening..

I still get pains in the left side of my chest sometimes and my back, thats where the blood clot was..

Just lucky to be here really..

Will I ever get bk to normal..I feel so old and have slowed down alot.

Thanks Sadia