Another story – 2 yr after DVT

Hi All. My name is Bob. I am new to this site and looking for suggestions about finding docs or clinics with experience taking care of patients having the post-thrombotic syndrome.

My story is that I am a reasonably healthy 69 yr old male who developed a groin to ankle DVT 2 ½ years ago while on crutches following hip replacement surgery. I did well for the first two months after surgery but then, because the hip prosthesis did not seem to be healing properly into the bone, was put on crutches and restricted weight-bearing for 6 weeks. (The prosthesis eventually healed in just fine, thank goodness!) While on crutches, I developed a bunch of unfortunate complications including shoulder and back problems, became inactive, sat far too long with my leg hanging down, and eventually got a DVT in my post-surgical leg. The DVT caused swelling although no pain at the time. I started the usual Levonox and coumadin therapy.

I came off crutches a week later and begin to gradually apply increasing weight to my DVT leg while walking – the leg by that time had atrophied and become weak from disuse. I soon developed several localized spots of muscle pain and tenderness in my thigh that were diagnosed as trigger points, that is, localized bands of tense muscle fibers causing knots of pain. Several weeks later while exercising, I developed a sudden stabbing searing pain in my calf muscles. The thigh and calf pains had a characteristic pattern of a deep ache as I stepped with full weight onto my leg and then the ache going away as I took weight off my leg. The pain would come with the first steps during the start of a walk and usually decrease with continued walking. Although the pain gradually decreased over the next 9 months, whenever I tried to increase the walking grade or distance, the pain would recur after the walk. That is, I would get to feeling better, go for slightly more vigorous walk, not have pain during the walk, but the evening or next day after the walk again have the weight-bearing pain and start a pain cycle lasting days to weeks. There were never the cramps, claudication, or pain at rest so often described with DVTs.

It has been more than 2 years since the DVT, and the distance I have been able to walk without creating the weight-bearing pain has become less and less over the past 6 months. It is frustrating because I used to be a reasonably active and well-conditioned guy for my age, out hiking and biking on the nearby hillside trails. Now, in order to prevent or minimize pain, I am limited to walking less than 1 ½ miles per day on mostly level surfaces. My docs (including 2 vascular surgeons) say the pain is not vascular – that it is not the classic claudication or venous hypertension related pain. My physical therapists say the pain is myfascial (muscle and surrounding supportive tissue) and recommend deep massage to loosen fibrous tissue and stimulate new tissue growth. Another recommendation is to rebalance the muscle tone – muscle energy therapy.

My deep veins (femoral and popliteal) remain occluded, common femoral vein open with a small amount of reflux, and superficial veins (greater and lesser saphenous) intact. I faithfully wear compression hose and rarely have edema, my blood profile is normal, and I am on low dose coumadin to reduce chance of a DVT recurrence.

While my DVT has not caused the problems that many of you have describe on this website and I feel I have gotten off relatively easily, I still would like to do something to reduce this limiting pain. I wonder how much of the pain is related to post-thrombotic process such as reduced venous flow and diffusion of nutrients and oxygen to tissue, and how much is related to myofascia and skeletal structural problems including fibrous adhesions and torn muscles. I wonder if the physical therapists have it correctly.

I will end my story by emphasizing that most people who get DVTs go on to recover without limitations. I hope you are, or soon will be, one of them.

I also wonder if any of you have experiences to share or suggestions to offer.

Thanks for reading,

Bob