Private

Hi Summer,

You have had a lot of treatment and I know from looking after my daughter and husband it takes longer to get over things the more treatment you have had. My daughter had a blood clot when she was in her 20's in her leg. It left her with verrucose veins which she had sorted out later in life. 

Hi NannyAnny,

The funny thing is, I seemed to bounce back quickly after all my treatment and then this all started to develop three months later. My leg is even bigger today - my left thigh measures 20 inches and my right one 30 inches! It really is bizarre. Can I ask, how long did swelling and feeling well again did it take for your daughter after her clot? 

Summer x

Hi Summer,

I can't remember much about it now. I do know she sat in A and E for about 4 hours before she was seen with the leg dangling down!!! She went because her knee was swollen. As soon as the medical people saw her she was clapped into bed for a week with leg up, and put into an old peoples ward.

She hated it and threatened to discharge herself. All I could think of was my grandad dying with the same thing! Admittedly things had moved on since then, but even so!!! I can still remember how full of joy I felt when we visited her later and she was back on her roller skates as if nothing had happened!! I've emailed her and will let you know what she says.

Just measured my legs. The good thigh is 20inches, The bad one slightly less, but thats with my stocking on. It would be more without it. The good ankle is 8 and three quarters inches, the bad ankle is nearer 10 inches.

Ann x

Had a reply from my daughter.

'It swelled up like a big fat sausage, and took about a month to go  down '

In your case, Summer, they are perhaps loathe to treat it until they know exactly what's causing it.

Just thought of another tip.

When my daughter had the blood clot they tested her for a condition that predisposes you to blood clots. Sure enough, she is prone to them. They thought being on the pill had brought it on. They suggested my other daughter got tested, which she did and also has it. They have to inject themselves before long flights and during pregnancy, and no birth pills! I think its better to be forewarned about these things.

I was tested before my hysterectomy, but they seemed to lose the results!! I was treated as if I had it, and had to inject myself for 6 weeks instead of 4.We still do not know if I or my husband, or both are the carriers. I think its a fairly common condition, but some things are best avoided.

Hi NannyAnny,

Thanks so much for this. Well it's been just over four weeks for me and leg still as big. I saw a private vascular consultant yesterday who issued (at last) a prescription for compression stockings. I am going for another scan this evening as he thinks my clot is more extensive and should have been rescanned when I complained of increased pain and swelling. My groin was never scanned just my upper thigh and the crease that joins your groin, the scan tonight is scanning my groin so hopefully I will have some answers. If not, then referral to a different specialist... I have been told in the past my blood is thick lol so would imagine I maybe was already at more risk of a clot. Thanks so much for your replies. Keep well and warm - baby it's cold outside! ha ha xxxx

Hi Summer, Glad you seem to be getting some answers. 

I can remember my daughter complaining about pain with her clot(Which is what drove her to go to the hospital), whereas I can't say I get pain with this lymphedema. My leg does feel heavy sometimes and 'different', but not painful. This cold weather makes it ache more, seems happier warm!!!!

Don't know where you are, but I'm on the South Coast, and its cold enough here!!!xxx

Hi NannyAnny,

I am in Essex. We visit the South Coast a lot - especially Dorset. I had another doppler scan last night and it's been discovered I have a blockage/clot from where femoral artery meets femoral vein right down to my thigh - so no wonder I am in so much pain. Doctor feels my huge leg and groin is purely down to the extensive clot and not lympheodema so not sure I belong in this group anymore haha.  The doctor is comparing my scan from NHS with the one last night to see if it has been missed or the new blockage has formed since my diagnosis in October at A and E. Take care and thanks again for replies, info and advice gratefully received x

Hi Summer,

 I’m so sorry to hear about this. I know from my own medical history that a blood clot is sooo frightening.

 I’m not able to give a longer reply now, but do you have a specialist vascular doctor who can see you for. I cannot say how important this was to me at a time when I and my close family didn’t know what was going on.

Stay in touch - btw, I’m on the East Suffolk Coast - not so far from you,

MrsDW 

Hi Mrs DW