Thursday, May 26, 2016 | Noon
The Miller Family Heart & Vascular Institute at Cleveland Clinic has earned an international reputation for excellence in patient care, surgical results, and clinical research. We have physicians who specialize in the diagnosis and management of vascular disease, including rare disorders such as May-Thurner syndrome (MTS), Klippel-Trenaunay (K-T) syndrome, median arcuate ligament syndrome, vascular issues affecting athletes such as cyclist induced iliac endofibrosis, congenital vascular defects, and others. Vascular surgeon W. Michael Park, MD answers your questions about May-Thurner syndrome and other rare disorders.
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- View previous chat transcripts.
May Thurner Syndrome (MTS)
LindsayT: Hello. Wondering if there's ever a situation in which you WOULDN'T recommend a stent for MTS (for example, if the patient were under 40 with mild symptoms and in overall great health and fitness)?
W._Michael_Park,_MD: Depends on symptoms. Without significant symptoms of venous insufficiency, no indication for intervention but when we intervene, we always place a stent or two.
LindsayT: What happens to the veins and arteries over time with MTS compression that is left unstented? Are there risks associated with collaterals and venous reflux?
W._Michael_Park,_MD: Unknown – up to 30 percent of the population may have anatomy that portends progression to MTS, but symptoms develop only in a rare few. Likely, they are benign for the vast majority.
Summer00: Is Plavix recommended along with Xarelto/Warfarin for life in a MTS patient with two stents and is Homozygous for Factor V Leiden?
W._Michael_Park,_MD: Depends on clinical history, but lifelong anticoagulation generally indicated for homozygous Factor V Leiden.
MrsWatts07: Regarding MTS and pregnancy: I have a second stent placed inside the first (collapsed) stent. I have read studies that claim stents recover well after pregnancy pressure is relieved, is this true for multiple stents also)? If my stent collapses again, is it possible to place a third stent inside (Ceterus paribus- assuming the problem is the same as before)?
W._Michael_Park,_MD: It depends as each subsequent stent becomes more difficult. But, we have other treatment options. Ideally you should have a conversation with a high risk obstetrician before your next pregnancy.
Aries55: I have been diagnosed with May-Thurners Syndrome in 2014. My doctors say I cannot be stented because my clots are too old and calcified. What other options are available to me for dealing with the pain and swelling?
W._Michael_Park,_MD: A thorough review of your imaging may offer some possible treatments. With iliocaval obstruction, compression alone rarely works. We often see patients such as you who have been told they have limited options and we frequently find solutions.
Sofia S: I am one of the leaders of a Google group for MTS. We have noticed that there are many women who suffer from Pelvic Congestion Syndrome (PCS) even though they only have one child or no children. Reviewing the imaging exams of such cases often reveal that the pelvic congestion is secondary to a compression of iliac vein(s) (MTS) or of the left renal vein (Nutcracker syndrome) or both. Do you regularly look for venous compression syndromes in such cases? Another observation is that a big number of women with PCS also have Ehler-Danlos syndrome, which is not surprising since varicose veins are one of the signs of Ehler-Danlos syndrome. Our impression is that these patients tend to develop more severe symptoms and in our opinion should be treated promptly to avoid symptoms similar to Post thrombotic syndrome. What are your thoughts on this? Do you ask your venous patients if they have Ehler-Danlos syndrome? Thank you!
W._Michael_Park,_MD: Typically, recalcitrant leg swelling despite treatment of superficial reflux and compression typically portends central venous obstruction and I do investigate. Pelvic congestion is outside of my referral pattern, but as a consequence of nutcracker syndrome, I do treat. Ehler’s Danlos is a terrible problem to have and operations, especially on patients with the vascular type, are hazardous. Thankfully, it is rare. Venous patients get asked in general about other medical conditions and in a review of systems, EDS would be relevant.
peacelovealisa: Does May-Thurner ever cause front thigh pain without pelvic pain? They thought I had M-T and were ready to put in shunt but then 2nd opinion (ultrasound) said I didn't have it. For 4+ years, both of my thighs turn red (blanchable) and cause severe pain after standing or walking for a few minutes. Are there any vascular disorders that could cause this? I've only seen vein specialists (no DVT or PAD) and not a vascular surgeon yet but have seen many other specialists who have ruled out my back and many other diagnoses. Thanks!
W._Michael_Park,_MD: MTS remains within the differential diagnosis and despite the classic symptoms, compression can affect both iliac veins and with activity, venous congestion could manifest as a change in color in affected vascular beds. Seeing someone who specializes in vascular disorders would be a reasonable next step.
shawna: Mom had stent placed for may thurner. Is it hereditary?
W._Michael_Park,_MD: We don't think so.
Paget Schroetter Syndrome
TTLL: For Paget Schroetter Syndrome - have you heard of minor swelling in the breast area post treatment (intravenous procedural removal of clot and subsequent first rib removal, etc.)? Could it be from destruction of vein valves -- clot was from the subclavian vein clot on down the arm. So much is written about leg clots and the pooling of blood that causes swelling and it is hard to understand what Post Thrombotic symptoms are normal for Paget Schroetter since it is so rare. Thanks in advance.
W._Michael_Park,_MD: Venous congestion after this kind of surgery is not uncommon and prominent veins over the chest wall can occur. If they persist, you need to see a breast specialist.
charlotteKK: My son plays tennis and had arm and shoulder pain and arm was swollen - thought it was just over use and was using heat, advil, etc. Now the doctor said he has Paget Schroetter Syndrome - is this serious? Can you tell me normal treatment of this condition - want to make sure that he is getting the right advice. Is this a condition that will go away or will he need to be on anticoagulation - can he continue to play? Advice?
W._Michael_Park,_MD: The initial management of Paget Schroetter has evolved. We now typically start patients on anticoagulation and treat any arm swelling with compression. No change in activity aside from the usual precautions for bleeding are necessary. Many times the vein will re-open, but the definitive treatment is first rib resection with venoplasty.
Critical Limb Ischemia
bababara: Hi - my dad has had diabetes for a long time. He has poor circulation but has not had a problem until the beginning of this year - he got a sore on his big toe and they have been treating it. At the last appointment, the doctor said that they may have to amputate if it doesn't get any better. Really? How does it go from a sore to amputate? Is there anything else we can do? If he can’t get around or starts losing his foot - he will be so depressed.
W._Michael_Park,_MD: Diabetics at a late or severe stage in their disease develop vascular disease of the capillaries. This results in both slow and impaired wound healing and a local immunodeficiency. Small injuries like a blister or sore can evolve into deep soft tissue infections or bone infections that require debridement or toe amputation. The more important question is - has your father seen a vascular specialist as treatment of blocked arteries may help heal a bad infection after appropriate debridement.
Thoracic Outlet Syndrome (TOS)
LindsayT: Any treatment you recommend or consider for Thoracic Outlet Syndrome? Is there any correlation between TOS and MTS?
W._Michael_Park,_MD: Treatments for Thoracic Outlet Syndrome (TOS) depends on type and presentation. There is no correlation between TOS and MTS.
Median Arcuate Ligament Syndrome (MALS)
bobby23: How do you tell if something is median arcuate ligament syndrome or symptoms are related to other disorders such as celiac disease or other conditions?
W._Michael_Park,_MD: Median arcuate ligament syndrome (MALS) arises from compression of the celiac axis by the median arcuate ligament of the diaphragm. In between the celiac axis and the ligament are nerves of the celiac plexus which get compressed and involved in severe inflammation. We believe much of the pain related to eating stemming from MALS is mediated by these nerves. We can test for this after ruling out more common gastrointestinal disorders such as celiac disease, tumors, and gastric disease by performing a celiac plexus block. MALS is a diagnosis of exclusion that means excluding more common diseases. The one association we have come across with MALS is gastroparesis, which is coincident in up to 20% of patients.
Klippel Trenanunay Syndrome (KTS)
alvares: 45-year-old male suffering from a lifelong battle with KTS. Now suffering from severe left leg swelling and ulcers. Help?
W._Michael_Park,_MD: KTS requires lifelong management in league with a vascular specialist familiar with KTS. Often varicose veins and reflux contribute to the development of ulceration. Standard compressive wound care should be effective in healing the ulcer but I recommend seeking specialty care ultimately for long term management.
MIguy: Hi. i am a 20-year-old male with klippel trenanunay syndrome with severe pain in my right arm and wonder if there are non-surgery treatments or if there are treatments like laser or very little invasive that can help me.
W._Michael_Park,_MD: I would strongly recommend referral to a center that specializes in the care of klippel trenanunay syndrome.
robertwest: I have pain and numbness in my arms - my doctor told me it is subclavian steal syndrome - I am going back in a week but not sure they know really how to treat it. Live in a small town. Any thoughts?
W._Michael_Park,_MD: Subclavian steal syndrome describes symptoms arising from a stenosis or occlusion of a subclavian artery upstream of the origin of the vertebral artery. With arm use, blood flow may reverse in the vertebral artery drawing it away from the brain resulting in a typical set of neurologic symptoms. What you describe may be arm claudication arising from a subclavian stenosis, but you may not have subclavian steal syndrome if you don't have the neurologic symptoms. Evaluation by a vascular specialist familiar with upper extremity arterial disease is a safe next step.
Iliac Vein Occlusion
Alisonmtw: My left iliac vein is occluded. I’d like to know more about the impact on my heart. Sometimes I can feel my blood is being pumped hard. I had abdominal surgery four weeks ago but last week I had an internal bleed. Only found this out after a week of pain. I have a hematoma now. My blood pressure whilst bleed was on going was 196/107. What are the longer term consequences of this?
W._Michael_Park,_MD: Should have no cardiac effect. Hematomas take a few months to resolve and should disappear with time.
Missing Inferior Vena Cava
carla22: Hi - my nephew was in a car accident last week and when they did x-rays and testing - they found he is missing his inferior vena cava. Is that ok? Does he need treatment? Will he have problems later? They did not even know until they tested him and found something else. If he needs surgery - will that be a problem? Can you fix that? Sorry for all these questions, but we are all kind of shocked and wondering what is next?
W._Michael_Park,_MD: The missing IVC is a known congenital defect that is very rare. More common is fibrosis and atresia (shrinkage) from prior DVT. Any treatment recommendations would depend on your nephew's symptoms. There are both surgical and endovascular options depending on what your nephew has.
Chuck8823: I have seen a lot of things online and on commercials about IVC filters and problems. My dad has an IVC filter that was put in a couple months ago for clot problem. Should we be worried?
W._Michael_Park,_MD: Depending on the indication which are narrow most of these filters should come out after the period of time their usefulness has ended. The recommendations have changed over the past decade and many of the filter problems that we see today are from filters left in from 5 - 10 -15 years ago. I would have your father have a discussion with the specialist who placed the filter about its removal and the risks and benefits of leaving it.
MrsWatts07: I have had an open stent for four months but still experience swelling, is there anything else I can do or specialist I can see to improve the pitting and non-pitting edema I have? I have been to a lymphedema clinic with some success but I'm struggling to accept that this is as good as it gets.
W._Michael_Park,_MD: The lymphatics may take a while to recover after prolonged symptomatic MTS. I would continue lymphedema treatment.
This information is provided by Cleveland Clinic as a convenience service only and is not intended to replace the medical advice of your doctor or health care provider. Please consult your health care provider for advice about a specific medical condition. Please remember that this information, in the absence of a visit with a health care professional, must be considered as an educational service only and is not designed to replace a physician's independent judgment about the appropriateness or risks of a procedure for a given patient. The views and opinions expressed by an individual in this forum are not necessarily the views of the Cleveland Clinic institution or other Cleveland Clinic physicians.