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 Introducing myself & my story

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Attila

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Posts : 2
Join date : 2010-04-04
Location : UK

PostSubject: Introducing myself & my story   Sun Apr 04, 2010 6:09 pm

Hello Very Happy

In Oct 2007 I was diagnosed with a large Above-Knee DVT in my left leg following hospitalisation for pneumonia. I was 34 at the time.

I was put on Warfarin for 6mths, then told to wear compression stockings for 2yrs.

Swelling symptoms & pain have been a feature of everyday life since then, I have changed my car to an automatic as driving was very painful & haven't been able to walk without pain since the clot.

My friend recently qualified as a community nurse & suggested that my GP refer me to a Vascular Surgeon to see if they could help me.

A Doppler & MR venogram later & I have been diagnosed with a complete occlusion of the left common iliac vein. I have been told that a bypass is not a possibility due to the pressure in my legs & the futher clotting risk, laser treatment/stenting is not possible to due to the occlusion being a solid mass of scar tissue.

I have been told not to 'push' my leg, slow down walking & do upper body exercise only, as the veins lower down my calf are coping at the moment but if I keep increasing the pressure I will get varicous veins & cause more problems.
The good news is that the scar tissue will not move & the residual clot left is under the scar tissue so will not move upwards.

I feel a bit 'lost' at times. I've always been active, (running around with my son, husband & the dogs) & have tried to continue with brisk walking through the pain as I thought that was what I had to do to avoid another clot...maybe not the best thing to have been doing...Got my mobility scooter today...see it as enabling rather than disabling, it means that when it's a bad leg weekend, I can still go out with my boys & walk the dogs.

I work in education & begin my teacher training in September 2010. Thank you for reading & for creating this forum. I have read many survivours accounts & am humbled by them x
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dero
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Posts : 904
Join date : 2007-12-09
Age : 57
Location : Near Ottawa, Ontario Canada.

PostSubject: Re: Introducing myself & my story   Wed Apr 07, 2010 5:16 pm

Hi Attila,

Welcome to LADVT, even thought I would rather meet people because of better circumstances, but you have this place and I hope that you can take some info that may help you.

If I read correctly, you are not wearing any compression stocking at present time, maybe if you were to go back to wearing it, it may help with the swelling and pain. I was diagnosed a few months before you and originally was suppose to also wear the "Fuglies" for two years(part of a study to find if the fuflies did actually help) and after I was diagnosed with PTS(Post Thrombotic Sydrome) and the only thing that the Dr. will recommend is to wear a fugly from the time I get up to the time I go to bed every day( almost 24/7) and I am wearing the open toe/knee high/30-40 compression rate sock.

You have to remember, I am not a physician I'm simply going by my own personal experiences, these are only suggestions, something you may ask your GP or if you see a Hemotologist or a Vascular surgeon.

As for the exercises, the danger of having the clot moving only lies in the 6 first months after diagnose, that is the time it "normally" take for the clot to attache itself to the interior wall of the vein.
After that, it's the danger is minimal (again, check with your Dr about this).

But ask your Dr. about wearing compression stockings to releave your swelling and pain, I know it does for me...
Yes I still have bad days, but not as bad as if I was NOT wearing the Fuglies.

Hope this helps.
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Attila

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Posts : 2
Join date : 2010-04-04
Location : UK

PostSubject: Re: Introducing myself & my story   Wed Apr 07, 2010 5:59 pm

Hi Dero

Many thanks for your reply.

Sorry if I didn't make myself clear, I am still wearing the compression stockings & will do so for life should I need to. I am wearing UK class 2, thigh high.

As for the exercise, it is not a case of the clot moving, rather the complete occlusion of the common iliac vein, whereby any increased pressure in the veins beneath causes fluid & proteins to leak from the veins into the surrounding tissues causing the pain & swelling. I have had massive swelling from going bowling 2 weeks ago Sad

I have received a letter from my consultant to say that they will consider the possibility of stenting in one years time if the venous hypertension is getting worse, however, they cannot guarantee that it will work or that it will not re-occlude. I am concerned about the procedure as the blockage leads to my vena cava, so would probably need a filter.

I am going to try gentle swimming as I am getting concerned about my general fitness levels.

Do you know of anyone else who has an occlusion? Thank you
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lindseyredhead



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Join date : 2010-12-22

PostSubject: Re: Introducing myself & my story   Wed Dec 22, 2010 12:43 pm

Hi
I underwent foot surgery 3 months ago, and developed DVT from calf to groin 3 weeks after op.
I eventually came out of plaster yesterday.
I do find that I am somewhat anxious and I think the other evening I even had an axiety attack, although this is not the norm for me.
Has this happened to anyone else.
ps didn't help when I went to the hospital yesterday and the doctor said, "the DVT could have killed you"
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dero
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Posts : 904
Join date : 2007-12-09
Age : 57
Location : Near Ottawa, Ontario Canada.

PostSubject: Re: Introducing myself & my story   Sat Dec 25, 2010 10:54 pm

Expect the unexpected...
Hi Lindsey, welcome to LADVT and like I tell everybody I wish I did not have to welcome you here because of your DVT, but since you are here...
Many times when we are in such situations, we do things that are not our regular selves.
How are your INRs, any problems with that?
If you have ANY questions please do not hesitate, ask!!


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