My Vascular surgeon called rather late last night to discuss TOS ( which we are both pretty sure I do not have, just needs to be ruled out) venogram test and best practice surgical procedure if positive.
I told him I was in current active clot again with approx 2 to 2.5 inches of non compressible vein with no flow. The report stated " chronic" and the vein itself was appearing way too small. He explained that meant epeated DVT's ( and so frequently are a real concern) are taking a toll on integrity of cellular lining of vein.
He had a thought- and a question. I told him I would ask my hematologist today and this group! ( I know APsnot fab / Mary/ others archive medical journals / abstracts pertaining to APS sometimes my docs don't even have.)
Here's his question:
Since your INR is over 3.5, and your hematologist does not feel comfortable using systemic heparin in any form, I'd like to find a rapid way to dissolve that DVT to open that occluded vein up.
There is a device called an ECOS that is threaded into the arm . It contains a slow drip of a clot busting medication called Activase and it bathes the clot at the site.
What experience have any of you had? Appointment with internist in 1.5 hours.
While I was typing this surgeon called again- internist is going to call hematologist in Princeton. My hematologist here still hasn't bothered to call.
This surgeon just might go ahead with my internist here and do this. We have got to get flow. I'm growing impatient of waiting for my San Antonio hematologist to call. It's been over 24 hours. I have had NO TREATMENT.
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KellyInTexas
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Yes, I was taking notes by phone when vascular surgeon called . I've figured out I misspelled the an acronym. It's EKOS- micro sonic accelerated thrombolysis system ( MATS)
This is it Cindy. Surgeon said it was " threaded up into vain directly into clot.)
It will be threaded into arm. Nurse said brachial is a big vein, so " cut down " will be similar to a cur down for arterial insert . So surgical bridging to Lovenox be necessary I'm assuming.
?????
Not there yet but after today's scan I think we are going to have to lyse this . It's the entire length of brachial vein and still no flow at all- none.
The collateral veins are compensating but the pressure they are under is painful.
I don't know what they're going to do because of your history. At first I was thinking intravenous of plain heparin, but then I immediately thought.. no, for you may be at risk for "heparin induced thrombocytopenia". Quandary, hmm🤔
No, it's because my INR is 3.5 plus that they will not give me any heparins.
( and yes, probably that plays a role, but they are not even factoring that. They are just saying for any patient - 3.0 INR is cut off for heparin addition. No Lovenox injections for active clot if INR is 3.0 or higher. That's the dilemma. It's good to be this high. No clots elsewhere...
Maybe nothing to do with your clotting but is your Cholesterol all in normal limits? Just after I started current meds my GP tested mine and it was 'normal' for me but the high edge of normal. He started me on the lowest dose of Crestor- 5mg (a Statin) because he was worried about plaques forming and potentially breaking off or causing clots to form. Since then my levels are perfect and my HDL has actually increased. This is the 'good' cholesterol that makes the veins 'slippery' to stop plaques adhering to artery and vein walls.
It's actually high. The genetic kind - the ones that are mis shappened. The garbage collectors. So the bad ones are high. Does that make sense?
London Lupus center ran the test. I told my GP and he told me not to worry about it. My OBGYN had also run a panel and told me my bad cholesterol was high .
You're welcome! Hope your procedure goes well-it sounds a bit scary and frustrating at the same time, while the doctors are dithering about what to do.
Well, I think it's too soon to say it's going to definitely go to "procedure status."
As you say, I don't think anyone is quite clear as to best practice quite yet. We all know one thing is for certain. " No blood flow" is definitely not best practice!
My body is now doing a ," work around" and using smaller veins. They are struggling and bleeding out a little under the pressure. My nurse was explaining it to me today. Looks like bruising pools.
Hi Kelly, have you ever been tested for other clotting problems which have confused the APS issue in me--
Lp(a)--I think it's similar to bad cholesterol but is genetic cause 2 of my siblings also have elevated Lp(a). Statins are used for this.
Homocysteine gene--I carry one copy and it causes irritation of lining of blood vessels predisposing you to clot.
Also, B2A3 platelet aggregation factor was abnormal. This may be partly why I respond so positively to aspirin
Back then the clotting specialist told me clotting factor problems tend to run in clusters which was certainly true for me.
Due to these positive tests I was put on Coumadin in January of 1996. As long as I was above 2.5, the TIA's stopped. Back then, no one was impressed with elevated anticardiolipin antibodies and it was pretty much ignored.
Thank God for the other clotting problems which put me on Coumadin.
Just the standard clotting mutations like Leiden V, protein s and c, and of course the one I secretly can't resist a 7th grade giggle over each time I see it, the MTHFKR mutation. ( don't bother correct the typo. It's much better left this way, especially if you have it, I'm sure!)
Any way, all negative. Very interesting on the others. I'll ask my hematologist. The question is would it change the treatment ? I guess it could champion a case for an antiplatlet, and direct a choice in which one in particular. Additionally it could help in testing other family members.
I have taken aspirin, lots of aspirin , since I was a teenager for headaches. I think is helps Coumadin work better and I still need aspirin for headaches.
Are you also on warfarin? ( I am having a terrible headache right now. INR at 3.4 so I can't Bridge/?inject with Lovenox. I just took Tylenol. I was wondering- can I take aspirin?
Obviously I'm on Coumadin... I'm thinking asprin is a great idea . I've not been counciled on how much. I'm begging my heme for anti platelet. He is saying no. Despite the fact I'm telling him Hannah Cohen / APS expert says other wise if patients present with arterial invokvementvwhis I do. ( small arteries of brain.) ... so I don't know how much. I have no tummy troubles. I'm thinking 1/2 aspirin?
It's the only thing that helps daily headaches. So far today I have had 8 aspirin! I don't recommend others do it. I also take naltrexone--lowdosenaltrexone.org which seems to make aspirin work better.
Headaches awake me during the night most nights.
Tylenol does nothing and it raises my INR something awful.
The naltrexone is sort of a new thing for pain. It is actually NARCAN in a very low dose. Since the naltrexone, I no longer take opioids. The above website explains it very well. My GP put me on it in October last year.
You may want to research naltrexone. It has very few side effects and may help headaches.
My instincts tell me aspirin can't be too bad for me because it relieves headaches. Most days I only take 6 aspirin. And, I have the platelet problem so I just go with it. I don't take over 8-9 aspirin a day. I have to draw a line somewhere.
I can't take other OTC pain relievers due to stage 3 renal failure. What's a girl supposed to do?
I have a first cousin with similar problems--rheumatoid arthritis, elevated Lp(a), fibromyalgia, insulin dependent diabetes. She refuses to get tested for APS so her GP, who is also my GP, told her to take 2 aspirin twice a day so long as she tolerates it. And, she does. She, however, does not have headaches. She just takes aspirin to thin her blood and maybe treat APS IF she has it.
If it's easier to text me, my cell is 304-412-3941.
Nancy in Huntington, WV--illegal drug capitol of the USA.
When I had stent put in superior mesenteric artery, cardiac cath, endoscopes, I did lovenox bridge for all those. Same procedure recommended on this site a couple of months ago.
As of now it looks like it's going to this procedure. But we are trying to get specialists to weigh in and we are having no luck getting help. My hematologist still hasn't called back. Did nurse forget to tell him? My internist called him directly today after lunch . Let's see.
Internist and surgeon are working it out. I'm asking specific questions. Is it general anesthesia? Do I need to bridge? ( cut down?)
I think they are going to email Dr Natasha Jordan , my doctor at London Lupus Center. She specializs in Vasculitis also. But surgeon needs to restore flow fast.
I answered this question on a thread you were in- you must have missed it- its lengthy- and I'm back to back dr appointments today. Orthodontist for grant and then his pedi heme in SA... maybe this thread. There are two. No. My heme in SA in SA is involved with vascular surgeon but will not follow through on any thing or any questions. I can't even get my next appointment- won't call back.
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