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 Long road to diagnosis....Frustrating!

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Ladybug50



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Join date : 2010-09-19

PostSubject: Long road to diagnosis....Frustrating!   Mon Sep 20, 2010 7:00 am

Hi! I am 50 years old and a runner (interesting how many of us are athletes). For my 50th b-day I decided to sign up for a mini marathon and such began my training. After a long run back in Feb, I had knee pain. I had run in the snow and thought maybe i had twsted or otherwise injured it. I did the RICE thing for about a month when I finally went to the doctor. At this time there was pain but very little swelling. Ortho doc did exam and thought menicus tear, but MRI did not support this theory. Diagnosed me with ITB and told me to come back in a month. Month later, pain little better but knee now very swollen, especially above the knee. Decided to send me to PT.

PT went fine, he gave me strengthing exercises. I remember telling him and the doc that I can do the exercises fine, but knee swells with in a couple of hours after exercise. PT has me start taping my knee thinking it was "runner knee." Few more weeks go by. Knee not worse, just not better. Still swelling with activity. Ortho doc says he is perplexed. Wants to do cortisone. I want to hold off. I had injured my knee before and knew sometimes it takes time to heal. Working on my feet 12 hour shifts so thought that might be making healing slower. Still had limp, knee still swollen.

Then, in June my husband suddenly passed away. Life was crazy. Remember being at the funeral home on my feet and my knee aching like crazy. A week or so later I told my neighbor who is a PT that I was concerned I might have a DVT. She agreed as I had a positive Holman's sign. Went to regular doc...by then calf had quit hurting and swelling was down since i had not been working or doing much activity. Doc did not think DVT. Then one Sat my knee hurt so badly I could not stand more that a minute or so. I had been taken of my anti-inflammatories due to upcoming surgery. Went to the weekend ortho clinic. He kept telling me it was arthritis that was flairing because I was off my medication. I told him no, I was seeing Dr X and we don't think it is arthitis...look at old MRI etc. He agree MRI did not show much but didn't seem to think my knee pain/swelling was a clot either.

I had surgery in Aug and when they asked about my knee swelling I told them just chronic knee condition with no diagnosis. Surgery went well. Knee/calf actually feeling better (perhaps the lovenox they gave me for 4 days?). Calf not swelling at this point, just felt tight....Knee swelling came and went dependng on activity.

So, fast forward to this month (Sept). I am trying to get back into the swing of things to go back to work, increasing activity etc. New symptom:calf and ankle now swollen with activity--no pain at all. Frustrated. Decided to go back to ortho for cortisone shot as knee was again swelling and now new symptom. He was perplexed. said he didn't think clot but swelling from knee pressing on veins and causing poor blood return and swelling. Even in this exam I had no pain except one spot behind my knee just as it goes into the calf. Doc decides doppler should be done "just in case." Got cortisone shot for knee.

2 days later, doppler studies reveal DVT fron groin to knee, 2 popliteal clots and several small ones in my calf. Started on lovenox and warfarin 5 days ago. Knee already better but maybe because of hydrocortisone? Calf and ankle swollen, which increases with activity. Thigh slightly swollen. No pain really. Gait still not normal nor has it been since Feb. First they told me normal activities, but then when they found out what my normal activities are they said stop for now LOL! I walk (haven't really ran much since Feb, but occassionally), bike, eliptical,weights etc. Funny, they said we don't want you doing all that right now. I'm like, "you said normal activities."

I had some complaints of shortness of breath and chest tightness so a CT was done. My lungs look fine so that is good! I think my endurance is just down due to inactivity of not working/surgery/dealing with husbands death. My big fear now is that i will have some permanent damage because it took so long to diagnosis. I told my hemetologist I DON'T think this is a post surgery clot which of course, is the first thought. I told her I have had symptoms for months! My symptoms were a little vauge compared to stories I read here, but it still seems someone should have caught this sooner. In all, I saw 3 different docs. Just feeling very irratated and frustrated right now!
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dero
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PostSubject: Re: Long road to diagnosis....Frustrating!   Wed Sep 22, 2010 12:05 am

Frustration is something that does not help, I understand you feeling this way, but it just makes it harder for yourself.
First off, I would like to offer you my deepest condolences and welcome to LADVT not that it's our favorite spot to be but we are here...
You will find out that yes, many of us were physically active before getting hit by this dreaded disease, condition, I hope that you do not have to follow our tracks, that you can avoid the PTS part (post clot damages...)
AS you know your body better then any body else, I would say get active but don't push it just right now...Just listen to it.
Normally, the first six weeks are critical because the clot is actually melding with the interior wall of the vein, so in that period, if you push yourself increase the blow flow, it may unattached (detach) the clot or part of it, making it travel to your lungs (pulmonary embolism). That is why they say to take it easy for the first little while. But how long have you really had the clot( that is the question...) If you have ANY question, regarding anything don't be shy ask and remember, in this area, there are NO STUPID questions.
How are your INRs are you wearing a compression sock, FUGLY as I call them Smile swimming is a good activity, I know you are hurting to get back on the track, I know...
Anyways, take care and stay in touch

Denis
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Ladybug50



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Join date : 2010-09-19

PostSubject: Re: Long road to diagnosis....Frustrating!   Wed Sep 22, 2010 9:46 am

My INRs are not yet theraputic. Currently 1.2 so still working on that. I am wearing knee high compression stocking. They really feel good which I did not think they would! Anyway, the swelling in my calf is better but swelling in knee worse when I wear the stockings. Don't know if I should try like a thigh high?
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dero
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PostSubject: Re: Long road to diagnosis....Frustrating!   Wed Sep 22, 2010 4:25 pm

Who prescribed your comp socks? talk to that Doctor. I have been wearing knee high open toes 20\30 comp ratio since shortly after I was diagnosed and just last year they upped the compression to a 30\40 when I was diagnosed with PTS, but I can't wear them when I ride, so I wear my 20\30 then.
I know what you mean about the sock feeling good, I can't do a day without mine now...Plus without it, that is when my leg swells up and hurts.(PTS)
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