May Thurner Syndrome and DVT and Post thrombotic Syndrome, do you have symptoms and looking for some

Hi Michelle, we have chatted in other discussions, pardon me if I repeat myself. Son had massive DVT after abdominal surgery, shouldn't have happened, long story. So he was in hospital for 14 days and on heparin then Warfarin and was stable on INR of 2.5, which we have found out recently is significant for preventing clot but also to reduce post clot symptoms. He went to GP as were able to monitor and recommend Warfarin doseage, so easier than in to hosp every week. The hosp  then signed him off as not in their care as going to GP for INR, but no post DVT follow up which made GP and us angry as no help, no scans, no advice. Son referred back to gen hosp for scans etc, they said massive DVT, starting to be healed by body but likely to get Post Thrombotic Syndrome. He had had Physio in Hosp and told to wear compression stocking. The Scan technologist said future looks bleak will get PTS and no cure, will have pain, swelling and reduced mobility as he gets older and nothing can be done. He also said exercise like walking and swimming but should give up weight bearing exercise as body would suffer from pain and swelling and lead to skin ulcers etc, don't continue exercising when leg hurts as could do damage. I did loads of internet research and found charity for DVT & PE sufferers (Thrombosis UK) and World Thrombosis Day and Mr Black (Vascular Consultant) and his team at Guys & St Thomas London. I honestly think that the majority of hosps have nothing to say about DVT apart from go on blood thinners and well done you didn't get a PE. 

We got referral to G&StT and they scanned and did blood tests and they are the experts. They said exercise as much as you can as doing good. If get daily ache in leg then take paracetamol and you are doing no harm as pain gone by next day. Exercise opens up collaterals and improves circulation, proved to be abs correct as by 2 years post DVT son was much better, less pain, less swelling. Basically what gen hosp said was just rubbish, ill informed. Son came off Warfarin after about 6 months, still wore stocking, measured by nurse and on prescription, as also helped to reduce daily symptoms of PTS. Mr Black said son was ideal candidate for fitting stents in leg, last December. He had small op under gen anaesthetic, 1 night in hosp, to put 3 stents in thigh, groin and abdomen by needle, tiny scar on on inside of knee. He feels good now, no pain at the end of day, no dead leg, no tingling only a small amount of swelling. He was told he had May thurner Syndrome sorted out by groin stent. On 6 more months of Warfarin to reduce DVT forming at stents. 

So to summarise, up to 50% of large DVT sufferers get PTS and life changing symptoms. Wearing stocking reduces symptoms but doesn't stop PTS happening. Exercise is good for PTS and post DVT. Symptoms will improve if you exercise, pref over 2 years. Some people benefit from stents in the vein, all DVT patient benefit from speaking to Excellent Vascular Consultants and getting tested. 

He has had the stents for 8 weeks now and has improved. The future is unknown as the current treatment is a trial. We do feel lucky to have got to this point and that this treatment is available now. If we had stayed under local gen hosp then I think very little progress would have been made. 

You may not get more symptoms and the DVT will be gone and you are back to normal but if you get PTS and maybe MTS then get a referral to G&St T at least for a proper diagnosis and some advice. At least you will know what to ask when you get to see a specialist, you might get a good one!

Post DVT problems can be damaging psychologically too and not always understood. I wish you luck.

Sheila.

Hi Sheila,

So good to hear from you and to hear about your son's progress.  I am so glad that he is feeling better - has he managed to get back to normal activity levels?  How is the pain/swelling going?  I am still on the waiting list for the op, waiting to see haematologist next week which is the last obstacle and then hopefully will get on to a theatre list.  I am really anxious about it though, and worried about making things worse.  The leg has been massively bothering me lately, lots of pain/cramp though swelling is much better.  My groin hurts all the time and I can't go to the cinema/theatre unless i stand at the back!  Even with the stockings. Sitting is just too painful, and it's now nearly two years since the DVT happened.   However I worry about the risk of clotting round the stent, and being limited in terms of movement and at least now I am able to exercise (the eliptical trainer and running are my things) albeit with significant pain and cramping.  Is Rob able to run yet?  Has he been advised to take it easy still and if so for how long?  As you know I'm a teacher and so I'm worried about how I'll cope after the op if there are problems, and also how much time I'll need to recover, especially with all the follow-up appointments.  I also want to manage my expectations in terms of the outcome, but as there is so little info out there I am struggling to find out how well patients respond and what the recovery process entails.  Also complicated by the fact that every patient's case is unique, and nobody can really predict how we will all respond.  Forgive all the questions, but it would be really reassuring to hear how he's found it all.  I've heard now about stents that elute anticoaglulant but they seem to have mixed results.

Hope you are well!  Thanks for the updates!

Karin, I really hope your daughter is improving as well, and that she's able to get on with life as much as possible.  She is so young it seems so unfair to have to deal with all this.  Hope her haematology appointment goes well too.  Mine is next Tues - will let you know how it goes.

Best wishes to all,

Nadine

Hi Nadine, lovely to hear from you.

 We are all well, especially Rob.

He was able to exercise as much as he wanted to prior to stenting as he was determined to make use of his 2 year window , if you like , to prove to himself and others how much he could improve. So he hit the gym and ran, swam and played tennis and cricket ( all year as play indoors really aerobically in winter). Still wore stocking and only small amount of swelling but significant pain at end of day, took paracetamol if necc. You may remember he had last abdominal op last July to have a reversal so wanted to improve the abdominal muscles. All worked well so was fit for stenting in Dec. He is about 10 weeks post stenting and swelling is reduced but not back to normal and pain is very much better, almost nothing. Back to exercising as per pre-stenting. As you say he is managing his expectations and if anything hopes to continue to improve and swelling to go down. He was always super flexible, prob from tennis, and that is as good as before, no feeling of limitation from the 33!!! cm of stents. So we are happy that it was worth doing and that he will stay clot free. He has next scan and check up in March. 

Is your groin pain because of MTS?, the symptoms from that are variable I think. Rob didn't have pain there just mainly calf, Mr B said MTS was big contributing factor to his leg swelling all the way up. He built up his level of exercise over the first 4 weeks after stents, mainly walking

and light exercises but still felt good. Pain from op only lasted a day. He did have small DVT after 6 days on the edge of stent but he had it removed and nothing since. They added another form of anti coagulation short term up to 6 week post stent scan, which is an important time. Rob was able to return to work only a couple of days after the 1 day stay in hosp.

I understand how it can be frustrating that we don't have loads of info and expectations. I would love to know how much more improvement there is likely to be, if any, but time will tell. As I told someone recently, we are in it for the long haul, his future circulation and venous health is important and the stents should safeguard that. I still haven't been able to hear from anyone who has had these stents and this level of treatment as being a trial there is little feed back so far. I do have every confidence though. I shouldn't ask for more as it is going well now and let's just see what happens say 6 months down the line. 

He is 30 today and I am grateful every day that he is as good as this now. He had 3 abdominal ops and now 2 minor but important venous ones, so I am thankful he is here and well and happy again. 

Take care and take each part of your progress as a small measurable, quantifiable and planned for event in your progression. You will come out of this with less pain and swelling and more comfort, I'm sure. Put yourself in the hands of the good Guys!!

As one teacher to another, Ha Ha. Set a target and go for it.

Cheers Sheila.

Hi Sheila - thanks so much for your kind words and reassurance and for sharing all your experience!  And Happy Birthday to Rob!!  I am so glad he has responded well and is able to crack on with life, I think it helps to have such a positive mindset.  It's great to hear that he is back to pre-stent activity - seems that if you can get through the first 6/8 weeks then the stent stabilizes and there is less likelihood of an adverse event.  I suppose time will tell if long-term anticoagulation is needed to prevent clotting round the stent in the future, like you said we are in this for the long haul.  Certainly it seems worth it if it can restore a better quality of life.  The groin pain I am certain is from the MTS which the MRI venogram showed is quite severe and was a major contributing factor to the original DVT - that and being on a high oestrogen contraceptive pill, dehydration and 2 shorthaul flights in quick succession led to a perfect hypercoagulable storm.  I also feel really lucky to have found this programme, especially after every single consultant/medic I encountered previosly said there was no hope other than to wear stockings and be stuck with the pain doom and gloom.  Some sectors of the NHS just see keeping you alive as a successful outcome, regardless of the quality of that life.  I feel very lucky as well.

Thanks for all the reassurance!  I'll let you know when I get a date for the op, and if I have any news.

Wishing you all the very best! 

Cheers,

Nadine

Well said, will be thinking of you and fingers crossed.

It is not all about quantity, quality is important too. Something that needs to be said to the medics, not enough to say or imply, aren't you glad you didn't get major PE and didn't die! TG for Mr B!

Would have loved to have asked tons of questions about all sorts of things related to the DVT and MTS and how and why and how long, but the consultations are full of so much personal info that the general takes a back seat. Mr B is always running way behind as so busy. He did tell Rob just prior to stenting that not everyone gets a big improvement but we certainly thought it was worth the try. Also the treatment and trial are on going so if not now then maybe in the future for some people.

I would love him to write more on line so we can dip and out of the relevant bits.

Keep in touch.

Sheila.

Hi jacqueline, sorry you got a clot, have they tested you to see why or is it obvious. My son was on heparin then warfarin not rivaroxaban. He did have loads of itching from compression stocking so took anti histamine like Piriton which helped. Have you told you doctor about the itching as it a well known side effect and it is possible you may be allergic. 

I have written loads on here already look back over the last 11 days. We had to do everything ourselves as the hospital sent him home with warfarin and nothing else. His GP got him a referral back to hosp to get scanned to check progress of DVT and the Gp prescribed stocking. Hosp were useless and inaccurate and all this after being in hosp for 14 days after DVT so shows you how bad it was.

Any other info just ask as I want to share as our experience was so bad I want to help if poss.

Were you offered DVT removal or thrombolysis, only some hospitals do it?

Good luck, Sheila.

thanks for reply.i had scan to see where clot was but they couldnt find it so was sent back to A andE where doc said that bloods said i had, so was told to come back in wks time for another.had second but dont think they were sure  so sent me back to A andE again.nurse came and checked heart etc.then came back and said i would have to inject myself for 5days.she showed us how too do it.2hrs later 2 more docs came and asked questions and was told i was being admitted at 4-30 i was sent to the ambucare ward where i thought i would be stopping.a\t 9-45pm nurse came and asked about my meds which i had sent home because they wouldnt accept them as they had been taken out of foil strips by chemist and put in a medicine bottle.so she said she would get some from pharmacy. came back again at 10-30 to ask if i could get my meds brought in as there was none in the hospital.inbetween another nurse came to do blood pressure and told me i was moving to another ward.she came with a wheelchair and loaded me up with all the things my family had brought in earlier.my son came at 11-15 with my meds to see me loaded up and went mad at them.he said dont you know that she has a blood clot and you have put everything on her legs.So he took it all off and came to next ward with me,only to find that there was no bed when we got there.so was told to sit in chair until it arrived.Then of course i had to go through all the forms again about meds etc.but only i could get the nurse who couldnt speak proper english so had to keep repeating myself.eventually at 12-45 my son said to the nurse is anybody going to give her some meds or i will she was supposed to have them at 9pm its now 1am and shes not had them.After the descussion about tabs again they decided i could keep my own until they could get some.Its now coming up too 2am just getting on bed which has not been made just a sheet folded at bottom.so had to get out and throw in over me.when nurse came had to ask for blanket again not put on me just thrown at bottom of bed.Then the night from hell i was put in the dementia ward so you can imagine what it was like.next morning nurse came round with meds 1/2 tab dont even know what it was.never told.own meds came at 10-30 after they had found where they had locked them up.Then nurse came to say it wwas time to wash.asked if i could have a shower but could tell she didnt want me too so i just had a bed bath.while she was on her break.after bath went to get off bed to be told that i shouldnt be getting out. complete bed rest.At 12pm doc came round asking questions had i seen physio,had i had bloods taken etc.so said no.so went away.next physio came asked me to walk to window and toilet,got half way to toilet and he told me to go back to bed.then blood was taken.then doc came back and said i was going home.to which i replied i have to have ct scan he replied it can be done sometime.Then another doc came to ask what meds i was on and said i could go home at 3-30pm.I eventually got home at 6-45pm after having to explain to pharmacy why one box of tabs was dated nov,and second was jan. came home with rivaroxaban.had CT scan2wks ago went to my docs the following tuesday and he hadnt got any results.He rang me wednesday 24th to say he had chased them up and everything was fine on report.so i said when do i get a follow up app with them to which he replied your not getting one im dealing with you.but you have got too have another CT scan in 12mnths.so i have to be patient and wait for it too go.he says i could be on these tabs for 12mnths or more.Rang him on thursday but still waiting for call back to see what i can have for itching.thanks again for reply hope this helps others.

Hi, sounds grim, just shows sometimes we have to complain before we get somewhere. Where are you? Waiting 12 months for a follow up seems not good enough. Were you told about stocking which helps some people and about exercising?

Regards, Sheila.

 

hi shelia sorry havent got back sooner had things going on.i live in the midlands.doc has given me antihistameans for itching and cream.nobody mentioned stockings or exercising.just been told to sit with legs up and get up and walk around after every hour.doc has said i can have socks when we decide when we are going on holiday.i try to go out every other day but cant walk to far.its starting to get me down now.not used to sitting around.especially having arthritus in knees as well.hope your all ok.

Hi Jacueline, it is frustrating isn't it. Did anyone mention the formation of collaterals, small veins which get bigger to help the main veins which may still have some blockage. The collaterals open up over time to increase the circulation. 

I have a neighbour who had clot recently in her leg and she had 2 follow up scans to check progress of the clot healing and hers was in a minor vein. She went to  major teaching hospital so maybe they are more attentive. You can get a referral to any hosp, your GP may know where is good locally, you need a good vascular dept and radiology.

My son built up his exercise over a couple of months as he struggled to walk much at first. Do you have any swelling in your leg after you have been standing or walking? That is why stockings can be good to reduce the swelling.

Hope you feel better soon.

Sheila. 

Thanks Jim.

Sheila.

 

Hi Jacqueline, glad to hear from you even though you are still struggling. It's a b**ch isn't it? Why are you on steroids instead of anti histamines? steroids are a pain if you don't need them. Lots of sideaffects incl increased appetite and sleeplessness, hope you are on low dose. Any stockings? are you able to exercise and do you get swelling? have they scanned to see DVT has healed? Lots of questions sorry but there is so much that is variable.

Son is brilliant now, stenting for Post thrombotic Syndrome great success, he is as active as ever, but then he is stubborn SOB but I love him!

Good luck, check out Facebook pages for DVT and MTS if you like.

Regards, Sheila.

hi shelia hope ur all ok please call me jackie hate my other name.i was put on steroids because of itching my whole body itches,also taking antibiotics doc thinks i have an infection which he says im one of the unlucky ones i