Post op complications

Hi, I'm very new to this site but I was recommended to come on as I've had a rough 3 months and just need to hear from other people in my situation 

i have had a pacemaker for 10+ years and it has helped me massively. Just before lockdown started I had to have my battery changed and since then I have now had 5 surgeries and been admitted to hospital 6 times (twice was via ambulance). Long story short I was diagnosed with a prevoked DVT in my right arm which runs across to my left and follows my wires. Was placed on blood thinners which was great but then 3 weeks ago and 2 months into the course my hands stated to swell again and legs/feet started to cramp when I walk or but myself under and slight stress so I have been trying to speak to GP, hospital and specialists and they finally told me yesterday that they believe I have PTS which I'm going to have most likely for the rest of my life. 
I am a very active 38 year old that events horses but at this present time due to the swelling there is no way I'm going to be able to carry on.....last night I was sat on the patio with the hose pipe running on my hands and feet just to help with swelling. 
so my question is, is there anything out there that can help with this or anything that has helped someone else as I really don't know what I will do if I can't ride or walk my dogs again x 



by Gemita - 2020-06-26 08:08:07

My immediate reaction is do you really have PTS (Post thrombotic syndrome?) or is this still an ongoing issue following your DVT ?  Have you had follow up tests with your vascular surgeons?  Have you had tests for PTS or is this just a diagnosis of exclusion?

In your shoes, I would go back to your doctors again, particularly with the swelling, to see whether there could still be some severe occlusion/narrowing in a vein somewhere that is contributing to your problems.  I would perhaps ask for further imaging or more specific testing to have a look again at the veins in that area, if this hasn’t already been carried out?

Time is a great healer and I really hope and believe that your symptoms will improve with the right care.  I know it can be devastating to be diagnosed with a life long health condition but this can often change with good periods of remission between flare ups.   As an example, I developed complex regional pain syndrome/reflex sympathetic dystrophy following a severe wrist fracture some years ago.  My symptoms were swelling, nerve pain and burning of limb and I was told it was incurable and could spread to the rest of my body.  I was almost paralysed in my right hand and could not write or carry out my daily activities.  But with specialist physio, neuropathic pain meds, hard work and a lot of patience, I improved over several years and have almost got my full range of movement back now.  Your body has had a tremendous shock and it will take time for you to recover too, so don’t ever lose hope or think this is the end of your active life.  It can and hopefully will be good again.  

What have your doctors offered you in the way of treatment ?  I attach a link in case this helps

UPDATE  I have had a quick search of this site under "PTS" but failed to find any posts under this heading, although I did come across a posting on 2013-06-28 by Shepheart under General Posting.  This surprised me since PTS appears to be a common complication following a DVT.   However, if you search under "DVT" and/or "occlusion", or widen your search, you will find posts of some interest. You could try searching too under "superior vena cava syndrome" or "development of collateral veins" since both of these can occur following vein damage/blockages (caused by pacemaker leads in the axillary/sub clavian veins). I was warned damage from pacemaker leads is a known risk factor for thrombosis/stenosis.  I do wish you a speedy recovery.

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