Iliofemoral Vein Stenosis Information

What is Iliofemoral vein stenosis?

ILFVS is narrowing of the major veins that drain the legs that can occur due to  a variety of causes. The causes can be:

1. Post-surgical, especially after spinal, hip, or pelvic surgery, such as hysterectomy or bladder surgery
2. Congenital, such as May Thurner Syndrome
3. After blood clots (DVT) with incomplete reopening of the veins after the clot
4. Due to chemotherapy or radiation

Iliofemoral vein stenosis  does not mean you have heart disease or another type of vascular condition. It has nothing to do with atherosclerosis, cholesterol, or any of the other arterial forms of vascular disease. In fact, most patients that come to our attention are otherwise very healthy.

What are the signs and symptoms of ILFVS?

The symptoms of ILFVS are due to two major issues, the lack of blood draining from the legs, as well as pooling of blood in the legs and pelvis, which can cause compression of other structures. This is much easier to understand, with an anatomical diagram. In addition to compression, patients may develop what is called “chronic compartment syndrome” which is the buildup of waste products such as lactic acid in the muscles of the leg and pelvis, causing pain, numbness, and tightness in the leg and very often the buttock area.

What makes this pain separate from neurological causes, is it is positional,  meaning it is worse with prolonged standing and sitting and at the end of the day, when blood has had time to pool in the leg and pelvis.

Almost any other type of pain in the same distribution, such as nerves, is not.

If you have had diagnostic studies for neurologic causes, such as MRI or CT scan, and there has been no significant neurologic cause identified, often the cause is vascular in nature. Other common signs and symptoms include:

1. Sciatica from compression of the sciatic nerve
2. Leg pain, numbness, and cramps
3. Buttock pain, and tight muscles in the buttock and hip area
4. Hip pain
5. Calf pain and tightness, especially behind the knee

How do you diagnose ILFVS?

ILFVS is screened for starting with a vascular ultrasound, but often we cannot see this structure well due to overlying organs such as the intestines that hide the vessels we want to see from view.

Ultrasound is a good screening test, but is not the gold standard for diagnosis.

For accurate diagnosis, a venogram is the next step, which is a test done through an IV under local anesthesia. In a venogram, a small amount of dye is injected at specific locations where a problem is suspected, which shows both the absence or presence of any narrowing, as well as blood pooling in any specific areas, which is unique to every single patient.

If the venogram is positive, we check the degree of narrowing with a small catheter, also done through the IV called IVUS, or intravascular ultrasound. IVUS is able to very specifically give us information on exactly how narrow the blood vessel is. Why is this important? Because there are specific, evidence based guidelines on at what level of narrowing blood vessels should be corrected. Veins that are narrowed to a degree of > 50% are defined as “critical” stenosis, and in general, evidence shows that correction is warranted. There are other criteria that determine your level of aggressiveness in terms of correction. If the level is > 50% and very symptomatic, meaning causing any of the symptoms listed, it should be corrected aggressively.

Do I have to do anything about my IFVS?

No. Only the patient can tell us when we need to do something in most cases. Typically, the vast majority of patients are symptomatic, but unaware their symptoms are due to venous causes, and its our job to teach patients the symptoms this problem can cause, but some patients truly have no symptoms, even with vein narrowing, and those patients do not need treatment.

Our job as surgeons here is to diagnose what may be a cause of your symptoms, and to equip you with the information with which to make a decision that is best for you. IFVS is extremely common. However, it is very similar to spinal disc disease. Not every patient with a herniated disc needs an operation. You must have symptoms that correlate with your radiologic findings. If you have both symptoms and radiologic findings that correlate, it is very likely that we can alleviate your symptoms. However, radiologic findings without symptoms, in general, confers no risk and does not need to be treated. This is because the human body is extremely adept at rerouting blood flow, and in some instances does this so well, that we need to do nothing about it. This is also why we do our best to make sure we specifically pinpoint your symptoms prior to any intervention. In most cases, only the patient can tell us they need to be treated, regardless of radiologic findings.

There are a few exceptions to this:

1. If the patient has a venous ulcer, typically correction is recommended
2. If the vein narrowing is causing blood clots, and other causes have been ruled out, correction is typically recommended

In our practice, when we perform major abdominal surgery, and patients have significant narrowing, and symptoms, we typically recommend correction, as it is now known that ILFVS is one of the major contributors to blood clots, and major surgery is a risk factor for these clots. In our practice, since we have started correcting these lesions pre-operatively, we have had ZERO major blood clots after abdominal surgery, even the most high-risk cases.

How is iliofemoral vein stenosis treated?

The treatment, in most cases for ILFVS is stenting, which is the placement of a tiny, but permanent metal tube in the vein that holds the vein open. This is typically made out of a platinum alloy, and is similar in nature to the material a fly screen is made out of. A stent is permanent, and in most cases, is a very safe procedure.

When should I treat my IFVS?

If you have positional (worse when standing or sitting) symptoms that are bothering you such as:

1. back pain
2. pelvic pain
3. bloating
4. leg swelling, cramping or pain
5. hip pain

OR have other issues such as an ulcer, clots, etc.

What are the risks of stenting?

Overall, stenting is a very safe procedure with a <1% risk profile. The exception to this rule is patients that have already had blood clots due to ILFVS, because when blood clots have already occurred, there is always a higher chance of clots in the future, as well as scar tissue due to clots around the vein. In patients who have had clots in the past, the risk of future clots is approximately 10% even in the best hands.

Patients who have had blood clots in the past require more intensive monitoring for several reasons, that will be discussed with your surgeon.

Another risk of stenting, which has never happened in our practice, but is described in the literature, is stent migration, or the stent moving. We believe this is largely due to surgeon error in stent sizing or placement, and we have not experienced this complication.

Why do I need more than one procedure?

We always take patients back for a second look after initial stenting, as veins are typically distended and shortened when blood is pooling due to a narrowing upstream. When you relieve this narrowing, 100 percent of veins will become longer and thinner, which is normal. However, this also means that often the stent is not sitting in the perfect position as it was at the initial procedure and needs a minor adjustment. This happens in the vast majority of patients and is easily corrected. Very infrequently, a third procedure is needed, but typically 2 procedures are the rule. A stent “settles in” for up to a year, and we keep an eye on it during that time to ensure your outcome is as perfect as possible. After one year, almost zero patients require anything else or even surveillance.

What is re-intervention and why may I need it?

Often we are asked if stents need to be “replaced”. No. However, some patients need what is called “reintervention” which is either slightly elongating a stent, or re-expanding an existing one with a balloon. Sometimes Most often this happens in patients with previous clots, and is due to scar around the stent that gets narrower with time, but can also happen (although more rare) in patients who had very severe narrowing and veins that were very enlarged as a result. In these cases, typically what is needed is angioplasty or re-stenting, which is done as an outpatient procedure. In any surgical procedure, even a very low risk one, such as stenting, you should have an objective reason for the procedure, and discuss all options with your surgeon before having it done. At NYC Surgical, we always offer an open line of communication with all surgical staff.

What are the risks of doing nothing?

In every non-emergency surgical issue, such as ILFVS, the non-surgical option always remains doing nothing, or medical management. The medical treatment is wearing very high level compression
garments. These can be uncomfortable, and they don’t relieve some symptoms, such as back pain, sciatica, or pelvic pain, because they can only compress the veins in the legs, but are an option if you are not ready for stenting.

In general, for structural problems, like ILFVS, which is more or less a “plumbing” problem in the body, there is not really an effective medical solution. Most patients also find these garments very arduous and uncomfortable, and we have not found they offer much relief. In general, the major reason to treat ILFVS is to minimize clot risk, or for pain/swelling relief, and the consequences of doing nothing are related to those things.

We hope that this informational packet helped explain the most common questions about ILFVS, and options for treatment. If more questions arise, please feel free to contact your surgeon, and we can help alleviate your concerns. At NYC Surgical, we believe our role is to gather information, present it in a format you can understand, and help you make the right decision for yourself, as we would do for our own family.

What can I expect after stenting?

Typically, the first stent procedure is uncomfortable, and results in temporary back pain, because the veins that are re-opened lay directly on the back muscles and the muscle feels the stretch initially. We often place a little numbing medication if needed afterward to minimize pain.

The second procedure is typically painless as there is less of a stretching action on muscle.

In almost all cases, we ask patients to take baby aspirin at the minimum for 3 months (81mg) daily. This is because any time you stretch a blood vessel, you are theoretically at higher risk for clots for a few weeks. This normalizes with time. In some patients with much narrower veins, we use something stronger due to known damage of the vein with intervention. Your surgeon will discuss this with you directly.