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Author Topic: What can I do ?  (Read 14853 times)

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Offline jane77

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What can I do ?
« on: May 16, 2008, 08:35:36 AM »
I had a DVT after my knee op in 1998.  Later Drs found I have Factor V Leiden - a genetic blood clotting disorder that affects 5% of the population but one they NEVER seem to test for BEFORE your surgery ......  Anyway - its been 10 years since all that - not on coumadin as its not allowed until your second clot in Australia.  Last year I tripped and laned on my knee cap onto concrete ( ouch).  A year later and knee is still not well - the knee cap 'slips' and then the pain is terrible. I tried anexercise bike this week and now I am in agony.... On a walking stick = probably should be crutches. What can I do ? The OS I saw late last year didn't want to operate and told me to try physio. Physio is not working - could the mensicus tear be getting bigger with physio ?  Could my patella have been cracked and not healing ( I have just been dx with Coeliac Disease which means I am high risk to have osteoporous ).....  Feeling a bit scared right now as the last op nearly was the end of me ...  I still suffer pain every day from that DVT ..

Offline rozzzie

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Re: What can I do ?
« Reply #1 on: May 22, 2008, 05:58:06 PM »
Jane,  I'm sorry you had so many problems.  Just because you have had a DVT and PE once does not mean that you will have one again.  You should not be having pain in your leg from a DVT 10 years ago, by now the clot should have dissolved; but you may be very sensitive. 

I had a DVT and PE after an ankle fracture, and again later after a flight where my knees had NO room and a week of meetings.  It is scary but nothing to force you to not have the necessary surgery.   Before my TKR's I had a filter put into the Vena Cava just below where the renal veins connect,  this prevents any clots that may form in your legs from getting to your lungs.

Your OS was right to send you for PT first, many problems are helped by PT.  If the PT is not helping talk to the OS again, if you think he's not taking you seriously, get a second or even 3rd opinion.

Good luck!

HUGs
Rozzzie
OA of knees since 85 
93 scrambled ankle - PE
98 PE
99 anlke fusion
04 hit by car broken leg, ribs AC joint seperation
RTKR  Dec 1 2005
LTKR. IM rod removal March 16, 2006

Offline Doc79316

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Re: What can I do ?
« Reply #2 on: May 23, 2008, 10:32:06 AM »
Hi Jane,

Rozzzie is right - you shoudl not be afraid of further surgery because of what happened 10 years ago. Have you spoken with your doctors about the pain you are still having freom the DVT?

I suffered 2 DVTs within a short space of time after surgery a while ago and it was only speaking with people here who worked out what it was that made me seek treatment. However, if I need more surgery (which I do) I wouldn't hesitate if it's going to help with my knee problems and improve my quality of life.

Please bear in mind that your OS isn't going to operate unnecessarily. He should though be aboe to look at your medical history and decide how to go about operating given your past problems. There maybe nothing extra or unusual that he needs to do. There may be more precautions he will take. But that is a decision for him and nothing for you to worry yourself about.

You say that you can't have Coumadin until your second DVT. SO what drug regime do you have to treat DVTs? Your OS would probably give you something similar immediately after suregery in any case to be sure.

Take care,

Laura x
Left knee surgery
08/06/02-L/Release
13/08/03-Fulkerson TTT
05/06/05-Stabilisation & Medialisation/Tendon Transfer
13/01/06-Proximal Hamstring Superior Stabilisation
06/03/06-RSD/CRPS diagnosed
20/07/06 + 03/04/07-Excision of scar tissue
29/05/15-Arthroscopy
02/03/20-Left transfemoral amputation

Offline jcblank

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Re: What can I do ?
« Reply #3 on: May 29, 2008, 04:59:34 AM »
jane--after my dvt i was diagnosed with protein s deficiency--which is also rare-but i do have to be on coumadin forever.
1995 menisectomy
9/06 menisectomy with resultant blood clot
6/07 meniscal transplant with peroneal nerve damage
12/07 peroneal nerve decompression

Offline jane77

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Re: What can I do ?
« Reply #4 on: June 01, 2008, 07:58:19 AM »
The rules in Australia are 'no warfarin for life until after your second clot'....

Have a little update here. After that post I wore a knee brace and ended up with symptoms of another DVT. Have had two Doppler Scans that were negative but tech said the are wrong 10% of the time.  Local Drs did not know what FVL was, and I had to seek another Dr and have had a week of Heparin injections.  Lots of chest pain etc - so assume the clot was probably micro size and had travelled from leg before the scan. Of course without proof of this local Drs are refusing treatment. I do however have a referral to a Hemo now. 

When I saw the OS 6 months ago he was not keen to operate as he could not guarantee another clot. Now this has happened - I imagine he will definately not want surgery !

Offline RedDawn

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Re: What can I do ?
« Reply #5 on: July 29, 2008, 11:24:25 AM »
For the record FVL is diagnosed (in the UK) by a genetic test that takes quite a while to perform & is very expensive, Im not saying that means people shouldn't be screened for it but thats pretty much why they dont screen everyone for FVL.

thre are obvious issues when screening a person for a genetic trait - you will, in essence be labelling them with it for life & it is a bit of grey area for insurance etc. There is no guarantee that a person with FVL or the prothrombin gene will have a clot, but there is an increased incidence.

The anti-coagulant therapy that is used to prevent coagulation carries its own risks also, so you dont want to be on anti-coagulants unless there is a significantly increased risk of clotting. Given some 3-7% of the population carry the FVL gene and about 2-3% carry the prothrombin gene it would not really be fair to say all these people should be on anti-coagulants, as the risk of bleeding may out-weigh the risk of clot formation.

the risk of  VTE (clot in the vein) depends on how many and what type of pro-thrombotic ('over-clotting') risk factor(s) a person has, so someone who has 1 copy of the FVL gene may have a much lower risk of a clot than someone with 2 copies of the gene, if someone has the FVL gene they may be more likely to develop a clot on oral contraceptives, but that does not mean they will or that they should never be prescribed them. It may mean that awareness of such risk factors could mean clinicans take a slightly different path, use different drugs, monitor more closeley.  In other cases, a combination of risk factors or high risk factors (protein S deficiency etc)  may mean that the patient is on OAC for life.   So what is right for one person will not necessarily be right for the next person.

If your Dr/GP whoever doesnt know much about the condition then maybe it is possible to ask to see a specialist haematology dr who will be used to dealing with complex medical interventions & operations in persons with bleeding problems, they would be able to advise what is needed pre - peri and post operativley and be well informed to advise of associated risks etc.

I hope some of this waffle is of some help to someone!

Offline jane77

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Re: What can I do ?
« Reply #6 on: May 06, 2010, 02:52:09 AM »
Well - an update.  I have really tried hard in the last 2 years to manage the knee w/out surgery. I cannot walk or exercise so have gained 15kg which is bad news now.  Then 2 months ago I hurt the knee again. I went for a nice walk and then I had pain and swelling behind the knee. I have been totally unable to do much since.  I need to see a Dr but cannot drive the car without extreme pain.  I rang my GP and she wonders if it is a Bakers Cyst - as the pain comes and goes a bit.  I did use anti coag injections for a week in case it was a clot.   My GP appt is in 2 weeks now ( had to wait 6 weeks) and somehow I have to drug the pain away and drive myself there.  Does this sound like a Bakers Cyst ? Some nights I can barely sleep for the pain but do not want surgery and another clot either!  The OS did not mention a leg filter to stop the clot travelling.  Is that a good idea ? Shall I book an appt with the OS before I get GP appt and scans ?  Would Prolotherapy help a Bakers Cyst ?