Sorry to hear about your DVT. It is shame that the thrombolysis procedure was not successful. Stenting appears to have improved your symptoms. I will try to anser the questions as I can.
1) Hang in there. It gets better over time. As a DVT sufferer, I fully understand your concerns.
2) I have no idea why your sole is numb. It could be due to restriction in blood flow through arteries or some nerve pressure. Impossible to diagnose over the internet. Is your sole blue or purple in colour? but that can indicate restriction in blood flow.
3) With regard to excercise, then I can provide better advice. The advice of "treat it like the leg had 10 broken bones and act accordingly" is a very very wrong one. This advice is based on old science that has been disproved long time ago. I would highly recommend you do some gentle excercise like walking. Swimming is also very good as you are horizontal, and thus the blood pools less. Some studies have suggested that vigorous excercise should be avoided shortly after DVT as this will increase the blood flow and thus increase the risk that clot will break free (embolize) and go to the lungs and cause PE. Interestingly, this has never been proven to be the case. Most doctors suggest though, to be on the safe side and stick with gentle excercise. After some time (weeks to months) after the clot has hardened, it is generally safe to be engaged in vigorous excercise, as the clot will not embolise (i.e. go to th lungs)
4) How high above 100 does the heart rate go? How was it before your DVT? One possibility is that because of your DVT, the heart needs somehow to work harder to maintain blood flow (although blood is pushed through veins with muscle pressure). This is just a speculation, If you heart rate is a lot over 100, you need to check this out. If it is just around 100 and above, I would wait and see if it improves.
5) Sorry about that you cannot sleep. If possible, can you put a pillow (or similar) under the DVT leg. This will reduce your swelling faster. Im not sure if this will decrease your pain at all, but there is no harm trying it out.

Hi and welcome! Sorry you had to be here, but this is a great group. It does sound like you've had a lot going on with your DVT, for sure, especially if you were in the hospital for a month (if my math is right).

Let me see if I can help with your questions:

(1) It can definitely feel like life is over when everything comes slamming to a stop with a clot like this. However, its important to note that this is ONLY a temporary setback, not a door slamming shut. You may have to put off somethings for a while longer than maybe you wanted, but that doesn't mean you'll never get back to them. It's definitely to your advantage that you were in good shape before this all started; from the stories on these boards, it seems like that does help with recovery. There's never a good time for a clot, guaranteed ... but it does (and will!) get better.
(2) I can't say I've had this exact symptom with the numbness, but everyone has different clots and different aches/pains during recovery. This might be one that is specific to you. Sounds super irritating, but as blood flow returns to your leg, I would imagine that you'll start getting sensation back. I mean, definitely check in with your doc if you don't notice any improvement, but try to give it some time.
(3) I have to respectfully disagree with @stefan0 here, as I think you're probably far enough out from your initial diagnosis that having the clot break off and travel is pretty unlikely. With my first DVT, I was only on restricted activity for a week. (And you're six weeks out, yes?) After that, I was told I could exercise "as tolerated." Truthfully, I couldn't tolerate much. Even walking around the grocery store made me feel sick and dizzy and had my heart pumping, just because so much blood was backing up in my leg and not making it back up to my brain. Definitely start with walking--even just around the block--and work up as you can. If your heart rate shoots up, back off. If you have increases in pain/swelling, back off. Swimming is a good option, but if your heart rate shoots up, you might ease it back down. Do what you can and don't beat yourself up about what you can't do.
(4) I haven't heard of heart damage after a DVT, but I suppose it is possible. It's more likely with PEs, for sure. I imagine that your leg is still really clogged up with clot. Blood is getting stuck in there, and your heart is working double-time trying to get it past all that blockage and back into circulation. As the clot starts to resolve, I would imagine that this would start to improve as well.
(5) Sleeping can be really hard for a while. I'm also a side sleeper and it can be hard to baby the leg in that position. Can you "scissor" your legs so that the top leg isn't pressing straight down on the other one? Maybe prop up the top leg with a pillow to deflect even more pressure?

I will say, though, that even though it doesn't feel like it, you ARE on the road to recovery. The clot is being resolved--your body is dissolving what it can and is creating other pathways for the blood around the blockage. This can take time, but you'll definitely continue to see improvement for a while. I continued to see improvement up to two years after my DVT (and that was even with residual clot in my leg). I'm almost ten years out from that first DVT and the only issue I still have is that the leg is bigger than the other one.

Clotting can be a really hard blow, especially if you're used to being active. After getting diagnosed, it can be hard to accept that there's not much to do besides take your meds, wear your compression stockings, keep it elevated, and wait for the body to heal. There's very little you can do to make it heal faster, and that can feel really frustrating, especially if you're used to "pushing through" other injuries.

Hang in there and try to be as patient as you can with yourself and your body. It will get better, just never as fast as we want it to. Keep us posted on how you are doing!

Thanks for correcting me TossNTurn. Im not sure how long time takes for clots in these big veins (ilio-femoral) to harden. "Months" is far too long, clearly I wrote this without thinking. But, it could take several weeks for it to harden, as these are among the biggest veins in your body.

Studies have shown that early ambulation (like walking and swimming shortly (few days) after the DVT discovery) can be beneficial and have not shown to have increased risk of PE. An old study showing increased risk of PE early after DVT after vigorous excercise is probably flawed, as it had very small sample size. The advice of "taking it easy with your leg raised" like one of your doctor suggested ("treat it llike a broken bone") is bad because it slows down the blood flow and thus may slows down your recovery.

I think you should try gentle excercise, and with "trial and error" see how much you can do. If you step over the line and do to much, the body will tell you. Considering that 6 weeks have now elapsed, there is nothing stopping you to do all the excercise you want to do, but again, this all depends what your body allows you to do.

This link may interest you:
http://www.clotconnect.org/patients/faq-frequently-asked-questions/faq-when-can-i-resume-physical-activities

You will heal and get better. Your DVT was found very early on and you've had interventional procedures and the stent that is going to drastically limit long term damage. I don't think you're going to return to dance instructing any time in the immediate future, but within the next few months you should have no problem building your leg back up to pre-clot activity levels. Also, there is no position you're going to move your leg in at night that is going to allow you to get a good nights sleep. What is keeping you awake is the pain. You would need to take pain meds in order to get a full nights sleep. I will leave that decision up to you and your doctor to look into. If your leg is bothering you that much at night, maybe you need to look into a low dose pain killer. I take pain meds daily because the pain in my leg never went away. I also have extensive damage in my leg which you do not have. You will have a much better outcome seeing as how the blood flow to your leg was restored within a week of your initial diagnosis Just take it easy and slowly work your way back into your daily routine and exercise regiment. Your body needs to heal and that will take some time to happen. I hope you feel better. Hugs!

JadesFire, I had a really hard time at night with pain for the first few weeks after I was home from the hospital. My doc wrote me a RX for darvocet for pain. It's not a heavy duty pain killer, but it did help me get comfortable enough in bed to get some sleep. DVT pain after diagnosis is one of the worst pain experiences I've ever had, and I've broken bones, have had surgery etc. I wasn't looking to kill the pain entirely. I just really needed something to take the edge off a bit for a little while.

I have never had a stent or Anjiojet thrombolysis so I don't know if that's the reason some doctor's are telling you to be more cautious with exercise or not. But starting with walking, swimming or riding a stationary bike would probably be better than jumping in and going full blown high impact exercise for now. I would defer to the doctor who did your procedures for what kind of exercise is appropriate in your specific case.

Recovery is slow going sometimes. You're only 6 weeks in. Don't fret too much right now. Just take it day by day.

I am a former D1 All-American in track and my DVT episode was a huge psychological blow. I am about 1.5 yrs out and I would say that now I have more residual problems from my knee surgery than the DVT it caused. Bike and swim. Sounds like you may benefit from wearing a hear rate monitor while working out as well.

OH my gosh!!!! I just found out last night that my iPhone can use its flashlight and an app to read my heart rate!!! Did you all know that?!

Digressed, sorry. What meds did they place you on?

Hang in there, you will dance again :)

Thanks for the replies. It is very comforting and encouraging to hear from people who have gone through this.
I rarely have pain (knock on wood); it stopped about a week before I was discharged from hospital. Mostly the problem is that my calf is really stiff, periodically the quadricep is as well.

I actually have one more concern: I was reading about post-thrombotic syndrome, which every doctor at the hospital assured me I'd need deal with, and it said that it occurs up to 1-2 years after diagnosis. so does this mean that at some point things are going to get WORSE?

Perhaps my increased heart rate isn't as dire as I initially feared: I've taken it twice while in bed and it was 78 the first time and 66 the second. And it's been in the 90s for the past few days, 88 this evening. Still higher than my normal but it seems to be improving.

Thanks for the suggestions, stefan014 andTossnTurn, about using a pillow and scissoring. I'm still tossing 'n turning too but I am sleeping better.

My heel sole looks perfectly normal although it does seem like there may be some broken blood vessels above it (ankle). I also suspect the local anaesthetic used for the Anjiojet as I had a similar reaction with my jaw after oral surgery some years ago.

One of the reasons that this is particularly bad timingalthough there is no good time, as TossNTurn pointed outis that my line dance instructor is leaving at the end of March and I would need to audition before that for the position. I actually attempted some level 1 dances and it didn't go too badly. Also walked on the treadmillat a pathetically snailish 1.5 mphfor 15 minutes and did some upper body free weights. I'm thinking of trying the stationary bike too (I'm not much of a swimmer); I tried going on the elliptical but it was uncomfortable so I'll put that off for now.

RMB, I never saw the doctor who did the Anjiojet/stent after he did the procedure; he was a radiologist and I was told that's standard. In hospital I was followed by a team of internal medicine doctors, after discharge I was told to see my family doctor but he's on holiday until the end of next month. The only doctor I've seen since is my endocrinologist (I have other issues) who is pretty much my primary doctor anyway.

Amerimex, I've always worn a heart rate monitor while working out, and I'll continue to do so, as my heart rate has always had the tendency to shoot up. As for meds, I'm on Plavix for another couple of weeks for the stent and Warfarin.

Again, thanks for the replies and reassurances. I'm still open to any advice anyone would care to share.

It does sound like things are improving. You're bouncing back faster than a lot of us did. (No way I would've done a treadmill anywhere before six months out.)

As for PTS, I'll tell you that it isn't a guaranteed diagnosis. Not everyone with a DVT winds up with PTS. I've had two DVTs in roughly the same part of my leg. The first one was chronic for a long time and finally disappeared completely sometime between five and nine years out from my diagnosis. My leg is also still larger than the other one--about an extra inch around from ankle to hip. I don't really have any issues with the leg in terms of pain, other than it feeling a little tight when the weather changes. However, despite all that, I don't have PTS.

As far as I know, there's no way to tell if any particular patient will or won't develop PTS. I think doctor's can make some educated guesses, based on the clot, severity, etc., but I don't know that there is anyone who is *guaranteed* to get PTS. Considering you're only six weeks out from diagnosis, I don't know that I'd focus on that right now. PTS really can't be properly diagnosed until 1-2 years out, as you said, since the symptoms are similar to what you'd feel from healing. Stick with the exercise, keep wearing the stockings, and keep your fingers crossed.

Hopefully, some other folks who have PTS will chime in also.

I have PTS and for me, I just have swelling and redness and leg heaviness. Sometimes it's minor and sometimes it's more profound and that's where it gets painful, but it's not the same kind of pain I had with the DVT. For me, the only thing that is hard to do when it's bad is any kind of high impact exercise. But even then, it's not like I can't do anything, and I find exercise actually helps it, like bike riding.

Some people do have severe PTS and it's quite debilitating but that's certainly not the majority of cases. So I don't think getting PTS means your situation will be worse. I think it just depends on the severity of the PTS, IF you do happen to get it. Don't be frightened when you read people's accounts of their PTS or their long term issues. It's truly not the norm and there's no reason to think it's going to be gloomy going forward for you. All you can do is just take care of yourself the best you can now.

Keep wearing your stockings and keep doing what exercise you can manage at the moment. That can help prevent PTS. To me nothing good comes from being inactive after a DVT. Doesn't mean you have to go hard core right away. Just move, even if for 15 minutes, even if on the bike. You'll improve; trust me. When I got home from the hospital the furthest I could walk was to the garage and back due to my pain. My doctor insisted I walk periodically throughout the day. I did that until I could muster the strength to walk a lap in the yard. Then as days went on I could walk down the block, then around the block, then the gym, for like 10 minutes on the treadmill. Within a month I was back to normal exercise. It wasn't like a felt a 100% but I didn't feel that bad In fact, the biggest issue was just getting my lungs back in shape (I had PEs as well as a DVT). I think a little pushing ourselves at some point is physically and mentally healthy.

So, I don't think you're behind at all in your recovery. You sound solid and you sound motivated. Good for you!

Few more comments on the PTS. Because you have ilio-femoral DVT, all scientific findings suggest that you will get PTS. However, it is absolutely impossible to predict how how serious your PTS will be. It could be so mild that it will have no influence on your life whats so ever. Interestingly, there is often no realtionship betwen the degree of clotting and PTS (e.g. when using the PTS Villalta scale).

Now to clarify a PTS a bit. PTS does not appear one day after one or two years. It represents the chronic phase of DVT. Following DVT, the body starts to dissolve the clots. First it secretes enzymes that break down the clots (same procedure is carried out during thrombolysis). The enzyme only works on fresh clots (first weeks), so when the clots harden, they are broken down by other means, but this is a very slow process (months to perhaps year, even more). First to clarify what happen during clotting of blood. When you cut your finger, the blood clots are formed to stop the bleeding. when the bleeding stops, starts a process to break up the clot to ensure blood flow to arteries and to ensure proper healing. Unfortunately the same happens during DVT. In DVT, the blood slows so much down (for whatever reason, e.g. lower leg cast) that the body mistakes it for an internal bleeding event and makes the blood clot. Naturally, the body makes a big error in doing so, and is not very efficient to dissolve these if these are large.

So, DVT changes gradually into PTS (or no PTS at all), and represent chronic state of the DVT. Lets say after two years you have PTS. The magnitude of the PTS symptoms will depend mainly on the extent of residual clots and the degree of valve damage. Scarred veins cannot be rejuvinated and damaged valves cannot repair themselves. Your PTS will probably not get significantly better with time, actually it will likely to get worse, basically as the veins age and become less effcient, like the rest of the body, but this is a porcess that takes decades.

However, it has been shown that excercise can decrease PTS symptoms. Also, there are now surgical approaches to deal with PTS symptoms, such as removal of hardened clots and even addition of artificial vein valves (that is very intrusive operation, but can be very effective). Compression stockings and also mechanical pumps (venowave) can be effective to reduce PTS symptoms.

Again, ilio-femoral DVT is among the biggest risk factors for PTS. However. as you are very early in the process, it is impossible to predict how your PTS symptoms in the future. I understand that you are scared by PTS and my intention was not to scare you further with this message. I had a DVT from ankle to 1/3 of my thigh and now nearly 2 years later I have PTS symptoms but these are mild. Im trying some days to be without compression stockings, and so far it is going well. You can also show a significant recovery as well....

Well, I can say that my DVT leg appeared fairly normal for 18 months after my DVT diagnosis, and the literally one day, no lie, it was red, swollen and painful. That was the PTS. So I disagree that it's not something that just appears out of the blue. It actually did for me. What may be internally going on is a different thing, but from a symptom and appearance point of view, that actually wasn't a gradual thing for me, at all.

Also, my PTS has improved a bit over time from the onset of symptoms. It has not been nearly as bad as it was the first 6 months after I was diagnosed with PTS.

Hard to really give folks feedback on PTS when I feel there really are no absolutes. People's experiences are quite different and my concern for new folks is that they hang their hat on the worst case scenarios, even when it's so early in their recovery. If I believed every statistic was going to happen to me, I'd have dropped dead from my PEs.

Additionally,I'd never recommend surgery for PTS unless it's truly wreaking havoc on your life and ability to function. I'm not a doctor, but as a both a consumer and PTS suffer, I'm not convinced of the successes over promised by vascular surgeons.

Hi rmb
Generally the PTS symptoms start at 6 months and if there are no PTS symptoms after about 1.5 -2 years, then it is likely that a patient will not get it. However, as you point out, there is exceptions to everything, and in your case it happened suddently after 18 months.In fact, these manifestation can occur years later. Based on research, the cumulative incidence of PTS has been shown to be 17% after 1 year from DVT, (severe in 3%), 23% after 2 years, 28% after 5 years (severe in 9%) and 29% after 8 years. Im actually quite surprised how it happened so suddenly. Have you got any clarification why your PTS happend so suddenly? http://www.stoptheclot.org/postthrombotic-syndrome.htm

With regard to vascular surgeons, yes they are all carried out on the worst case scenarios, which are extremely rare. Studies have shown that about 50% of patients with proximal DVT develop PTS. However, in most cases these are mild symptoms, while the incidence of severe PTS (I have seen numbers from 1-15% between studies) is more rare. Such treatment may only benefit the patients that have the most severe PTS. As an example, EKOS has been used on hard clots, but this is intra-venous catheter-directed thrombolysis and is probbly least invasive. Surgical removal of residual clots has been shown to be effective, and Mark Garcia and his team at christiana-care-health-systems, has been succesful in this treatment option. Adding new valves (valvuloplasty) or making bypasses are both very invasive, and only used if life of the patient is a complete hell. Generally the recovery from this operation takes many months if not year. If successful, the life of the patient can improve markedly.

Just an update on how things are going now, at just over 2 months:

Overall, things have improved: I started going to the gym about 3 weeks ago, going on the treadmill, doing weights and stretching. After that my heart rate started to go down; now it's mostly in the 70s range, higher than it was before but totally acceptable.

I also started dancing again, which I find easier to do than walking LOL. I've put off finishing my group fitness certification until September but have high hopes that I'll be well enough by then to complete the courses.

Sleeping's not bad. I'm using the pillow as suggested and found a position on my left side that is comfortable enough. Never been a great sleeper, anyway, with my chronic nasal congestion.

My biggest problem is still the calf. It's really hard and not allowing me to stand barefoot (I'm using wet shoes for the showerif you think the stockings are ugly, wait until you see these things!).

I feel like after I was sent home from hospital I was released into the wild and left to fend for myself since my GP is unavailable; I haven't had any care except for the Warfarin Clinic . I have to wait for the GP to return before getting a referral to a haematologist and to get cleared so I can work with physio; I don't want to wait so long that the muscle can't be helped. My sister suggested going to a walk-in clinic but I'm not sure how much use it would be in this situation.

Thanks for all your advice and suggestions; it really helped calm me down and offered reassurance during a VERY stressful time. I'm not sure what I would have done without you.