WHAT IS THORACIC OUTLET SYNDROME?
You are going about your daily routine, and then it happens. Your chest starts hurting, you have some trouble breathing, your fingers are numb and tingling. It even hurts to move your neck and lift your arm. You feel like you are having a heart attack. The only thing you can think of why the pain is so bad is that car accident not too long ago. You rush to the ER, and you are told it is not a heart attack. You have something else though, thoracic outlet syndrome. The upside, it is the most common type of TOS, neurogenic. So, take a breath, it is not a heart attack.
IS THERE MORE THAN ONE FORM OF TOS?
I am sure you are wondering what in the world is TOS? It is an abnormality or compression of nerves and/or blood vessels in the chest area. There are three kinds. Neurogenic, which is the most common. Venous TOS, which is a compression of veins in the chest area, and Arterial TOS which is a compression of arteries in the chest area. The condition has symptoms that feel like a heart attack, pulled muscles, and pinched nerves. Your fingers can swell, neck pain, and dizziness. The treatment for all three conditions can be as simple as an anti-inflammatory, physical therapy, blood thinners (venous TOS), clot dissolvers (arterial TOS), up to and including surgery. The surgery is called decompression surgery. Doctors will go in and relieve the pressure on nerves and vessels affected.
WHAT ARE THE CAUSES OF THORACIC OUTLET SYNDROME?
While TOS has some organic (natural) causes and can be present at birth, most of the causes are physical injury or trauma from an accident or repetitive injuries due to a job. Even sports injuries and weightlifting can cause TOS. While men can be afflicted with TOS, it is usually women who deal with this. This is in part due to women not being as muscular through the chest as men. When scar tissue forms from an injury, there is less muscle so the nerves and surrounding vessels can be affected. TOS, while manageable, has no cure. All you can do is treat the symptoms and complications arising from this syndrome.
HOW DO I KNOW IF I HAVE TOS? IS IT HARD TO FIND OUT?
Now you know what TOS is. Next, you need to know how to find out if you have it. This is not as easy as you think. TOS is not a common condition, and doctors have a difficult time diagnosing it as well. The first step is to have x-rays done. The doctor will do neck and chest x-rays. If nothing is broken and symptoms persist, you doctor will order a CT Scan and possible an MRI. This will show the structures inside your chest and neck. Due to numbness and tingling that accompanies TOS, the doctor may also order a nerve conduction study. Thoracic Outlet Syndrome may be difficult to diagnose as many of the symptoms mimic other injuries and medical conditions. It is imperative that you let the doctor know about any accidents or injuries you have had recently.
HOW IS NEUROGENIC TOS TREATED?
If it is determined that you have Neurogenic TOS, your doctor will recommend physical therapy so you can learn exercises to relieve your symptoms. Your condition will never go away. You should always be cognizant of your symptoms worsening as well. You will also be given Motrin or Naprosyn to help with the inflammation. You will still need to report any new symptoms or changes and continue monitoring for further complications that could arise.
HOW IS VENOUS OR ARTERIAL TOS TREATED?
If you have Venous or Arterial TOS, you will feel symptoms very suddenly. This will usually occur at the time of the accident or injury. These forms of TOS are life threatening and profoundly serious. Doctors will perform blood work and other tests as they would for Neurogenic TOS. Compression of blood vessels suddenly can cause clots, severe pain, and shortness of breath. Doctors will likely do an arteriogram. This is an x-ray done while shooting dye to examine the blood vessels in real time. When a clot is found during this procedure, clot busting medication can be administered. Doctors will likely then perform a procedure called VATS (Video Assisted Thoracoscopic Surgery) which allows them to examine the surrounding area for further damage and do repairs. If needed, surgery called decompression surgery will be done to alleviate the pressure. Imagine a hose with a kink in it. The pressure builds as the water is trying to force its way through the hose but has nowhere to go. When you remove the kink and restore the water flow, the crisis has passed. This is what decompression surgery is like. The doctors go in and “remove the kink” in a matter of speaking. They will then repair the surrounding area and make sure there are no “leaks” or tears in the affected vessels.
After surgery, you can expect to be on medication to thin your blood. You are going to have to follow up regularly for lab work and medication adjustments for the rest of your life. You will have to have regular screenings to monitor damage to your blood vessels as well. This will include x-rays, MRI’s and possibly arteriograms. You will be restricted with lifting until you completely heal from surgery. Even when you recover from surgery, you will need to be mindful that heavy lifting and exertion is not recommended either. If you are on prescribed blood thinners for an extended period, your diet and activities of daily living are going to be forever changed.
WILL LIFE BE THE SAME AFTER MY DIAGNOSIS?
Thoracic Outlet Syndrome is a serious condition; however, depending on which form of TOS you have you can live normally for the most part. Your life is going to be much different now. You will need to have your condition monitored by a doctor on a regular basis. While neurogenic TOS is the most common form, it can still cause blood vessel problems. The numbness and tingling probably will not go away. You will need to take extra care in daily activity. With decreased sensation anywhere in your body comes risk for other injuries. Lifting is not recommended either as this exacerbates your condition. If you were a laborer or required to lift heavy objects, even repetitive work such as typing, this is not recommended after your diagnoses. You must exercise your affected limb as nerves do not regenerate like blood does. Nerve death can occur, and numbness and tingling are the main symptom. Often, severe pain will accompany this condition as well.
As with some heart problems, a person in crisis with TOS can be mistakenly diagnosed with angina. It is important to note if you are not seeing your regular provider that you inform the staff you have Thoracic Outlet Syndrome. I am going to share a tip with you though to keep in mind to help you determine if it is angina or TOS crisis. Pain from TOS occurs on the affected side most of the time, unlike angina. Angina pain gets worse if you are walking or exerting yourself. TOS pain will not worsen with exertion, and it will not be relieved either unless there is medical intervention. While this may seem trivial right now, if you are having what feels like a heart attack, anything to relieve the stress of that situation will help.
IS THERE A CURE FOR MY CONDITION?
I know you are probably thinking, “Will I fully recover from this?”. The answer is no. Once you have been diagnosed with TOS, you will always have TOS. Now you can still lead a full and happy life. Sometimes lifestyle changes can help the symptoms go away. The condition never will. Physical therapy is a great place to start and recommended to learn to help you cope with the pain. You can learn the exercises from a professional that may help alleviate the numbness and tingling. If you are diagnosed with Venous and Arterial TOS because of your injury, doctors will have to monitor you closely due to the trauma of the accident. Just remember while it is inconvenient, it is necessary. DO NOT delay treatment if you are experiencing symptoms, as it can be a clot formation or injury from TOS. Our trusted Atlanta car accident attorney recently represented a car accident victim who had to have his rib removed because of this.
What does all this mean? Thoracic Outlet Syndrome is very unpredictable because it affects a large area of the body. Our chests are tricky. The heart and intricate blood vessels and network of nerves that give us and sustain our life are also wildly unpredictable. By its very nature, the chest cavity bone structure is woven together with strong muscle that can take hits and protect our precious organs. Any disruption of that finely tuned system, such as an accident, can change us for life. Thoracic Outlet Syndrome in any form is scary, unpredictable and must be taken very seriously. Your life is not going to be “normal” again. In the day and age of learning “new normal”, Thoracic Outlet Syndrome must be your first consideration when you are undertaking new endeavors from the day you get your diagnosis. You must plan vacations around blood draws if you are on medications, new jobs are not always going to be an option because you should not be lifting. You need to be mindful of what worsens your pain and numbness and avoid it because you can injure another part of your body due to TOS.
DO enjoy life. Do not underestimate the seriousness and implications of TOS in any form. Follow your doctor’s orders and make accommodations that will keep you healthy and safe. TOS is manageable, NOT curable. Always keep that in mind and respect the gravity of what has happened. Accidents happen in a split second, but the implications are lifelong.