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Rare Vascular Conditions (Drs. Clair and Bartholomew 9/26/11)

Monday, September 26, 2011 - Noon

John Bartholomew, MD
Section Head of Vascular Medicine; Staff Physician in the Sydell and Arnold Miller Family Heart & Vascular Institute.

Daniel Clair, MD
Chairman and Vascular Surgeon, Department of Vascular Surgery, Miller Family Heart & Vascular Institute

Description

The Departments of Vascular Surgery and Vascular Medicine at Cleveland Clinic have earned an international reputation for excellence in patient care, surgical results, and clinical research. Our members specialize in the diagnosis and management of vascular disease, including rare disorders such as May Thurner's syndrome, Klippel Trenaunay Syndrome, Fibromuscular Disease, Hypercoagulable syndromes, and many others. Dr. Bartholomew and Dr. Clair answer questions about rare vascular conditions.

More Information

Cleveland_Clinic_Host: Thank you for joining us, let's begin with the questions.


Peripheral Artery Disease

James: I am heart transplant recipient, six years out with PAD, both femoral arteries 100% blocked, overall excellent health at this stage, can I have bypass graft surgery for my legs to get rid of restless leg syndrome which is extremely bad? My TX Cardiologist says it's risky, but my legs are very bad, sometimes "no energy" and painful to walk at rapid pace. Confused at what to do!

Dr__Daniel_Clair: It is possible to have bypass grafts for blockage, but restless legs are really not commonly caused by a problem with the blood flow to the legs and doing bypass will likely not correct this problem. What would be best to have in this situation is a formal assessment of how much your limitation is due to blood flow when you walk and if blood flow really is the issue to try a program of exercise to see if this can improve your walking. If things continue to worsen, then attempts at improving the blood flow to your legs could be taken and this may be either a minimally invasive procedure, or may require bypass surgery.

Dr__John_Bartholomew: I might add there are many different causes including sleep apnea and metabolic conditions. I would also want to rule out peripheral arterial disease (PAD) to be certain he does not have this condition that can cause leg pain with walking.

porchplant: Is restenosis of femoral artery pass considered rare? I understand this means re-clotting which is my dilemma. Also scar tissue growth around stents in same leg for claudication and (?) by-passing the by-pas, if you will. Suggestions if this pertains to this topic. Thanks.

Dr__Daniel_Clair: It is not rare but it is more common to have the grafts stay open without problems. There are some things that can be done with minimally invasive options to open up a graft that has re-narrowed. Either angioplasty or stenting or some cases a small surgery to fix a local area or problem.

Dr__John_Bartholomew: I would also want to make sure your medical condition is optimized - control diabetes, blood pressure, antiplatelet therapy, statin, stop smoking.

Jennifer: my mother has pad. She has had a cadaver vein put in her leg, It didn’t work, then she had bypass on leg. It didn’t work. This was in 2010, In April of 2011 she had her saphenous vein used to bypass her blockage. She also had 3 toes removed because of no blood flow. Now it is Sept. and she has little or no blood flow again to her foot. The podiatrist is monitoring her foot weekly but the vascular Dr. said that now they can just wait and see. Is there anything else that can be done for her?

Dr__Daniel_Clair: Without looking at the blood flow to her foot it is difficult to say what options there are along with wait and see. I would suggest a second opinion for your mother to evaluate her. We do have trials that are available when there are no options available to improve blood flow to the foot.

porchplant: If scar tissue is formimg around the stents in lower leg what to do? Is this another problem other than vascular?

Dr__Daniel_Clair: If the stent is already in place - there are methods that can used inside the artery to relieve this. Sometimes a short segment bypass can be helpful. It is important to reduce your risk factors to reduce the incidence of renarrowing.


Symptoms

trish23950: could gait abnormalities, burning sensation, tingling, muscle twitches in arms, hands and legs be caused by vascular disease?

Dr__John_Bartholomew: I would worry about additional problems other than vascular. I would want to make sure you have a complete medical exam and history and physical and possibly see a neurologist.

Roxanne: I have a friend that was in the marines and he can't find anyone to help him around our area (buffalo, ny). He has a bulge coming out of his hip and the doctors are telling him that if it gets much bigger it could burst the artery. He told me that the artery is 3/4 away from the bulge and he is afraid it is going to burst, break the artery and he will bleed out. Is there anything you can suggest that he does. He also has been told by 4 surgeons that this is an extremely rare case and that they are afraid to do anything about it. BTW - I actually talked to my friend and he told me that he has internal snapping hip and a benign growth that has been active after 3 years. I hope this information helps a little more. Like I said everyone he has seen in the buffalo area is afraid to take his case. Do you know of any cases that have been reported like this?

Dr__Daniel_Clair: It is difficult to be sure what is the issue given what you have described. We see a large number of patients with problems that have not easily been able to be addressed at other facilities and we can easily coordinate care between different services. We would be happy to see and evaluate your friend.

Lorisheloby: I am going to the Dr. but still they have no answers...I fell 5 weeks ago & cracked 2 ribs & after a week, they discovered fluid around my left lung...then, another week goes by & I have swelled legs w/ burning pain ~ I am up 15 lbs...going for another ct scan & bloodwork tomorrow...could this be vascular ~ related? They are looking for auto~immune diseases but I still think it's related to my fall...

Dr__John_Bartholomew: I would want to make sure your heart is ok with an echocardiogram and for the swelling in your legs make sure you were not inactive - an ultrasound would be valuable to make sure they are not missing a blood clot. I would also check your liver, kidney and thyroid function is normal and that you are not anemic. It is possible also that this is an autoimmune disorder.


Clotting Disorders: Deep Vein Thrombosis

davaleen: Post DVT How long does one experience pain and discomfort in the DVT leg??? I have seen a vascular surgeon here in Brantford, He says I am post thrombotic but my leg is not thrombotic. I have been in a lot of pain and discomfort since my work related injury caused my DVT behind my right knee. It is a constant throbbing, pins and needles and burning in my right leg which worsens when I move. My leg feels heavy from the knee down. I am currently fighting with WSIB for loss time at work due to this pain and am looking for answers.

Dr__John_Bartholomew: The normal treatment for postthrombotic syndrome is to wear a 30 - 40 mm of Hg below the knee compression stocking. One should elevate the leg when off it so that the ankle is higher than the knee higher than the hip. Your pain could also be due to other reasons and you want to make sure there is not any nerve involvement because of the pins and needles and burning sensation you describe. It is very important to put the stocking on first thing in the morning before your legs begin to swell. And - take the stockings off at night before you go to bed. The stocking needs to be changed every 3 - 4 months as they lose their elasticity. I often recommend that the patient see physical therapy as well to make sure that they are getting exercise and to make sure there is no other mechanical problem. In your case you may need a thigh high stocking because of the pain behind the knee.


Intestinal Ischemia

CDixon: My mother has a very complex medical history which include the following: Bilat. carotid disease and CEA, STEMI and stent to RCA, HTN, dyslipidemia and thoracoabdominal aneurysm (not at surgery criteria). Over the past 18 months she has been complaining of left lower abdomen cramps after eating, with intermittent nausea and vomiting. Although her weight has stabilized over the past few months, she has dropped in dress size from a 14 to a 10 without any effort. Recent studies reveal bilat Renal artery stenosis and two of her mesenteric arteries completely occluded and the remaining artery stated to be about 90% occluded. She has presented to a CV surgeon today and he has stated that we should just wait and watch for disease progression. My question are: 1. Is this reasonable and prudent? 2. What is the mortality with proceeding with surgery at this point? 3. What is the mortality with wait and watch?

Dr__Daniel_Clair: After reviewing your mother’s story, it does sound as though she may benefit from a procedure to restore blood flow to her intestines. I am concerned that she may be having symptoms that are somewhat atypical and in any event, I believe she is at significant risk with what she has going on and would at the very least benefit from a second opinion regarding her vascular status. We would be happy to do this here for her at a convenient time.


Aneurysm

KareninBl: Have you ever heard of any instances in which a thoracic aortic aneurysm decreased in size? I was diagnosed with a 4.4 cm aneurysm on my ascending aorta in March 2011. I'm 65, healthy, non-smoker, 5'7", 145 lbs and I exercise and usually eat healthy foods. I guess it is wishful thinking/hoping. I'm now on BP meds and statins and in the normal range.

Dr__Daniel_Clair: Aneurysms do not really decrease in size but they can stay stable for quite a long time. Continue to minimize risk factors as much as possible. Blood pressure in control; a statin and probably antiplatelet therapy as well. You may benefit from a beta blocker to reduce growth rate as well. This clearly is something that should be followed regularly at the very least yearly with a ct scan or echo to assess the size.

Lee: I have been told I have an aneurysm at the back of my knee, currently 1 cm, my doctor tells me not to worry but we need to check it every year, guess my concern is that’s all I was told ,is there anything else I should do to help. Because I have V. veins in both legs I intend to have an operation in each one laser the other need to be the regular method (under the knife) am I getting the correct advise? your comments would be helpful, I am 59 and 6'2" 290lbs Lee

Dr__Daniel_Clair: The advice is correct. You wouldn't usually need surgery until aneurysm is greater than 2 cm or there is significant clot in it. Observation is a reasonable thing to do with annual exams at this point. It is hard to know if you would need minimally invasive or open repair without looking at images of the aneurysm.

Dr__John_Bartholomew: It may be helpful to make lifestyle changes such as not smoke, eat a healthy diet, exercise and achieve an optimal weight.


Carotid and Cerebrovascular Disease

MikeL: I have been told that I have total blockage of three of the four arteries in my neck that go from the heart to the brain. The only one open is one in the back of my neck. The doctors here are just saying that I need to change my life habits and come back every six months for a follow-up. I don't have insurance or any income right now, so I'm uncertain if they are correct or if they are blowing me off because of my financial situation. Please tell me straight out, what is the prognosis for my condition? Thanks, Mike

Dr__Daniel_Clair: It is hard to know whether you have complete blockage or a narrowing without seeing your films. Seek a second opinion from another vascular surgeon to get a sense of which arteries are narrowed, how narrowed they are and if there are options for treatment.

Julia: I was diagnosed with 100% blockage of Right Carotid in 2004. I have been on Plavix and ASA 81mg daily since then. My Left carotid is completely open and I get carotid ultrasound yearly to keep track. My question: is there any new treatment to correct this or is it still just relying on diet, medication and collateral circulation to control it?

Dr__Daniel_Clair: There are 4 arteries which supply the blood flow to your brain and these arteries all connect at the base of your brain. With one carotid artery completely blocked the other 3 arteries become responsible for supplying adequate flow to the brain. Attempts to open the blocked artery can be performed, but the long term risk is lower leaving the artery as it is rather than trying to open the blocked artery. You benefit from doing what it sounds like you are already doing to reduce the risk of developing disease in your other arteries. There are some other causes of carotid arteries to block off and it is important to be sure that you have had a full assessment of what the cause of the artery blocking off is.

Dr__John_Bartholomew: I would suggest the patient with the carotid artery disease have their lipids checked out (total cholesterol, triglycerides, LDL and HDL cholesterol) and be certain these are well managed as well as blood pressure control and diabetes if they have these conditions. Thanks


Klippel-Trénaunay (K-T) Syndrome

scottespa: Is there a reason why my K-T leg aches from either inactivity or if I drink alcohol (two beers and aches the following day)

Dr__John_Bartholomew: I would want to make sure you are wearing your compression stockings and avoid drinking beer if it aggravates it.

scottespaff: Wondering if there is an association between K-T and a youthful appearance, saw a trend on the blogs. I'm 54 but have been told I look 40?

Dr__Daniel_Clair: I have never heard anything about that.

LilSlysmom: my 9 yr old son has KT and we just found out that his right testical never dropped because the scrotum is filled with veins...what is the best procedure to do for this..

Dr__Daniel_Clair: He should be evaluated by a pediatric urologist and a vascular surgeon to handle the vascular problems as well. The Cleveland Clinic has a team approach to care that would benefit your son.

scottespaff: Are there any genetic trials scheduled at the clinic for K-T and it's variants?

Dr__Daniel_Clair: I do not think we have any genetic trials here - you can check for www.clinicaltrials.gov for a listing of trials. Unlike some places that care for patients with KT we do take an aggressive approach to patients who have had some limitations due to their KT and we have had significant success with this approach.

LilSlysmom: Can you tell me if there is anyone that is currently trying to cure KT Syndrome or as to why KT picks and choose it's victims...what is the basics that points to one particular person to get KT...hope this makes sense...

Dr__Daniel_Clair: There is no cure for KT but it can be managed appropriately and allow an individual to lead a very functional normal life. We still do not know why it affects some individuals and not others.

scottespaff: I have read many causes of k-T one being that people born with k-t lack deep veins in their leg and also that a vein which is present while a fetus does not disappear as it should.,

Dr__Daniel_Clair: A majority of patients with KT do have a deep vein system. I do not know of any causative study that has assessed persistent venous anatomy in utero.

LilSlysmom: do you know who specializes in KT in Atlanta Georgia?

Dr__Daniel_Clair: I have no idea

Dr__John_Bartholomew: I do not know anyone in Atlanta but you could call the local AMA or go online to see if there is anyone.

scottespaff: do people with k-t normally die of the condition?

Dr__Daniel_Clair: No - the patients may experience limitations of function but there are treatments that can improve this; which may involve surgery or sclerotherapy - no patient should die of KT.

LilSlysmom: can someone with KT ever out grow it?

Dr__Daniel_Clair: People do not outgrow the KT but it can become less of a limitation as time goes by if taken care of.


May Thurner’s Syndrome

Cleveland_Clinic_Host: We have had a lot of interest in May Thurner's Syndrome, can you tell us a little more about it?

Dr__Daniel_Clair: May Thurner is a syndrome caused by compression of the iliac veins on the left side that predispose a person to clotting in the deep veins of the legs particularly on the left. It could be identified in individuals who have persistent swelling in their left leg or particularly in those with deep vein clots in the left leg.

Dr__John_Bartholomew: The left iliac vein is compressed by the right iliac artery.

Dr__Daniel_Clair: We can through noninvasive means assess the presence of this and if found it can be easily treated by stents to reverse the compression of the vein. MRV and ultrasound is used and CT venograms are used to evaluate this.


Buerger Disease (Thromboangiitis Obliterans) 

Cleveland_Clinic_Host: Would you also be able to tell is more about Thromboangiitis Obliterans, also called Buerger’s Disease?

Dr__John_Bartholomew: Buerger's disease is a disorder more commonly seen in men but can also be seen in men - classically smoker. Also reported in people who use marijuana - this is referred to as cannifus arteritis. It is usually seen in younger individuals - generally under 40 but can be seen in individuals of all ages and patients can have artery involvement, nerve involvement and vein involvement. The artery involvement is often seen as a non-healing sore in the digits of the toes. These patients often have normal arteries higher up or more proximal. The treatment is smoking cessation and avoiding all tobacco products. Patients often can have complaints of arch claudication or pain in foot with walking and sometimes have superficial thrombophlebitis and raynauds phenomenon.

Even though there are things that seem we cannot revascularize or you may be told there are no options - there are some trials that are underway to improve blood flow in these instances.


Atresia

martha: What is atresia? My uncle has atresia to his kidney.

Dr__Daniel_Clair: Atresia is a decrease in size of the organ in question. Atresia of a kidney may be a result of things other than blood flow to the organ, but the artery to the kidney should be evaluated and could be the cause of the problem. This assessment could easily be done with ultrasound or CT scan.


Medications

porchplant: Would Lovenox ever a better choice than Prada along with Plavix to stop /help stop re-clotting of femoral by -bypass with below knee claudication ? Life long ( 46 yr)) type 1 diabetic. Thanks.

Dr__John_Bartholomew: Pradaxa is the new agent which is only approved for non-valvular atrial fib. I am not aware that it has been used for bypass grafting - in this situation. I am assuming you are on pradaxa and plavix and still having clotting problems. If you are clotting on those two - then occasionally lovenox can be helpful but you should be evaluated for specific clotting problems.

porchplant: Pradaxa was prescribed to (?) thin blood to lower limb that keep reclotting ( by-pass and stents that are now covered with scar tissue). Daily I am shaking, nervousness inside extreme anxiety. I am under tremendous stress with other life issues to add to it all but these symptoms seem to have started within a week of starting Pradaxa. Drug info doesn't show these symptoms as side-effects but this is such a new drug ( and I feel a bit like a guinny pig!) I must ask if this is the Pradaxa. I also have Hyperthyroidism, treated with 5mg Metimazole daily tat was stared about the same time as Pradaxa. What do YOU think?

Dr__John_Bartholomew: I would worry more about your niaspan and your thyroid disease causing that side effect than the pradaxa. However there are some side effects that are not well known with this drug as yet so you need to confer with your doctors about your overall condition.

porchplant: Niaspan along with Pradaxa/Plavix combo to aid in stopping re-clotting? Highly concerned about internal bleeding when Praxada isn't requiring monitoring. What would I ask for to BE monitered?

Dr__John_Bartholomew: There is not good test to monitor pradaxa. The only test that is available only at specific institutions - the ecarin or ECT test. It is really more of an investigational test. The risk of bleeding intracranially is lower with pradaxa than with coumadin and tests to date has shown it is safe without monitoring.


Amputation

claudia: Hi, I have a brother who currently is in California and is 56. After suffering a traumatic accident he has to have a below the knee amputation. After doing some research I want to know if there is a surgeon at the clinic that can perform the surgery using the Ertle Procedure. This is a bone bridging surgery. Thank you.

Dr__Daniel_Clair: The Ertl procedure is an amputation that bridges the gap between the two bones in the calf. This bridging stabilizes the bones in the calf and provides for a more stable amputation. I do the Ertl procedure and have had significant success in those patients in whom it has been performed, having patients running distances and doing athletic activities of many kinds with this amputation. We can arrange a visit for your brother to be evaluated for this type of procedure.

Reviewed: 09/11


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