Neurogenic TOS Treatment

Treatment of NTOS can be quite difficult given that any type of nerve pain is difficult to treat. But even other symptoms such as muscle pain, tightness, and spasm can be difficult to manage given the fact that there are a lot of different components impacting these symptoms and though many of them are intertwined, there are usually several different areas of the body being impacted all at once. As a whole, types of treatment can vary based on many different factors such as cause of compression, severity of compression, severity of symptoms, types of symptoms, age, impact on quality of life, access to medical care, coexisting medical conditions, and patient preference. The success of any type of treatment can also vary based on those same factors, but can also vary based on the fact that each body is different and each situation is unique. Conservative treatment is any treatment that does not involve surgery. The two main types of treatment categories are conservative and surgical.

CONSERVATIVE TREATMENT (NON-SURGICAL)

Activity Modification

Many symptoms of NTOS are triggered by certain movements or activities especially in the early stages of the condition. Therefore, when possible, one of the first steps taken by many patients to control and manage symptoms is to avoid certain aggravating or triggering activities or to modify the way in which they perform the activities. Examples of activities that are known to aggravate NTOS symptoms are overhead activities, lifting a lot of weight, or repetitive arm and hand movements such as typing, sewing, or vacuuming. Therefore, avoiding these activities can provide a lot of symptom relief to some patients. This isn’t a great option for someone whose job requires performing these types of activities, so stopping these activities likely isn’t a permanent solution for someone in that situation. However, sometimes having temporary restrictions on activities while engaging in other treatment options can manage symptoms enough to eventually be able to go back to those activities later, but this is not the case for everyone. But, in certain situations, for someone whose symptoms are triggered by a hobby or by something that is not vital to their existence, sometimes stopping those activities is all that is needed. No matter what treatment options are being explored, activity restrictions and modifications are usually a part of most NTOS patients’ treatment plans. Often, patients can impose helpful restrictions on themselves, but doctors will also provide very specific restrictions for a patient depending on their circumstances. Keep in mind that not all NTOS symptoms are able to be managed by activity modifications.

Medications

Medications are mainly given for symptom control and relief as there are no medications that can remove the physical compression of the nerves. With NTOS, medication treatment often involves a lot of trial and error. There are different types of symptoms in different types of structures which often require multiple medications to treat these areas. The medications used for NTOS are tolerated and handled differently by each person’s body. What might work for one person doesn’t necessarily work for another. Side effects can be problematic, and a certain medication from a drug class might be more tolerable to someone than other medications within the same class. Therefore, trying several different medications within the same drug class is common. Dosages often must be increased over a period of time or adjusted, so it can take awhile to find the right combination of medications and dosages to suit a particular patient. The trial and error process should always be done at the direction of a physician, and dosage adjustments or stopping a medication altogether should never be done without first consulting a physician. Below are the most common types of medication used to treat NTOS:

Non-Steroidal Anti-Inflammatory Drugs (NSAIDs) such as Ibuprofen or Naproxen
Muscle Relaxers such as Robaxin, Flexeril, Baclofen, or Tizanidine
Steroids such as Prednisone (short-term use for flares)
Tricyclic Antidepressants (for nerve pain) such as Amitriptyline, Nortriptyline, or Desipramine
SNRI Antidepressants (for nerve pain) such as Cymbalta or Effexor
Anti-Seizure Meds (for nerve pain) such as Gabapentin or Lyrica
Opioid Pain Meds such as Tramadol, Oxycodone, or Percocet
Lidocaine cream, ointment or patches
Compounded Topical Creams/Ointments made by a compounding pharmacy where they take several different types of medications and mix them together into a topical cream or ointment
Low Dose Naltrexone

Physical Therapy (PT)

PT is one of the mainstays of NTOS treatment. It is often the first course of treatment right after initial diagnosis. PT for NTOS is much different than PT for other neck/shoulder/arm conditions. Therefore, PT should be with a therapist who has experience with or knowledge of NTOS. This is often very difficult to find as most therapists do not have NTOS experience. However, if the wrong kind of PT is done for NTOS, it can increase symptoms and even cause additional damage to the nerves. For this reason, initial PT is usually attempted for 4-8 weeks with physician follow up and assessment after that time period. If symptoms are worsening and causing significant issues before the end of that time period, it is best to consult with a physician right away. PT for NTOS is usually aimed at the following:

Scalene muscle relaxation and gentle stretching
Neck and upper back muscle rebalancing
Shoulder blade mobility and mechanics
Diaphragmatic breathing
Pec minor muscle relaxation and gentle stretching (for those with coexisting NPMS)
Posture improvement
Tools to assist with symptoms during activities of daily living i.e. driving, computer work, sleeping

Most TOS specialists have a PT protocol that can be given to the patient’s PT if the PT is not very familiar with NTOS. PT will not necessarily work for everyone with NTOS. It is not uncommon for even the right type of PT to worsen symptoms in NTOS patients including to the point of being intolerable especially in those with longstanding compression. Typically, whether PT will help depends on the main source of the patient’s nerve compression. If it’s mainly postural or occupational or in the early stages of the condition, then there is a better chance of managing symptoms conservatively. However, many patients with NTOS have anatomical anomalies contributing to compression in addition to scar tissue wrapped around the nerves from years of compression, and PT cannot fix those issues. Sometimes, a patient will start out being able to manage symptoms conservatively with PT in addition to other treatments, but NTOS is known to progress if the main underlying cause is not addressed, so then it can become too difficult to manage conservatively. The success of PT is heavily based on the patient’s view of the situation and whether they feel that the level of relief obtained in comparison to the level of time and effort required to manage the condition is worth it. Each patient’s situation is unique, including which type of therapy helps to manage their condition. Conventional PT is what is most commonly used for treating NTOS. However, some patients find relief in unconventional methods such as Active Release Technique (ART), Feldenkrais, or aquatic therapy.

Botox Injections

Botox is made from botulinum toxin which is the toxin that causes the disease botulism. Used in very small doses, it cannot cause botulism. Most people are familiar with Botox as used for cosmetic purposes to reduce the look of lines and wrinkles on the face. Botox works for that purpose because it temporarily paralyzes muscles into which it is injected. In addition to its cosmetic use, it is also used to treat certain medical conditions. The way it works for treating NTOS is that Botox injected into the scalene muscles interrupts the muscle spasm and therefore decompresses the nerves resulting in symptom relief. It is not a permanent resolution for NTOS because Botox only stays active for so long, and can only be injected every 3 months. Botox injections are usually done by a pain management doctor, interventional radiologist, or physiatrist under ultrasound or other imaging guidance. Following injection, it can take 2-4 weeks for the Botox to kick in and for relief to be felt. Not everyone responds to Botox, so there are some patients who do not get any relief from it. The time range for which the Botox remains active and effective is different for each patient. There are patients who get significant relief only for a few weeks and there are some who get significant relief for 2-3 months and, therefore, get injections repeated every 3 months. Some specialists believe that, although Botox itself is not a permanent fix for NTOS, PT can more easily be done during the time that the Botox is active and thus longer-term relief can be achieved. There are also patients whose bodies can develop an antibody to the Botox the more often injections are done and thus, over time, the Botox becomes less and less effective. In addition to the scalene muscles, some patients will have other muscles injected that are often impacted by NTOS such as the SCM, upper trapezius or levator scapulae. Botox is not FDA approved to treat NTOS, so most insurance will not cover the cost of it. It can be quite expensive, so checking with the ordering provider and the patient’s health insurance company is well advised. There is also a Botox savings program that will reimburse patients who qualify.

Other Miscellaneous Treatment Options

Most NTOS patients are desperate for any kind of pain and symptom relief, and because there can be so many symptoms in different parts of the body, it can often require several different types of treatment to keep things at bay. Once a patient finds a few things that work, they usually only provide very temporary relief and thus must be performed weekly or sometimes even several times a week. Below is a list of some of the different options that can provide symptom relief:

Trigger Point Injections (lidocaine or steroid injections into muscle trigger points)
Dry Needling (insertion of needles into muscle trigger points w/o injecting medicine)
Chiropractor (there are several different types of chiropractic methods. Extreme caution should be used when the diversified method (i.e. cracking/popping) is used on the neck and near the brachial plexus as injury can occur)
Massage Therapy
Osteopathic Therapy
Acupuncture
Nerve Block Injections
Cupping
Topicals such as lidocaine, Biofreeze, IcyHot, Capsaicin, Tiger Balm
TENS Unit (electrical nerve stimulation via skin electrodes) – should be used with caution and at the direction of a physician or PT as can irritate nerves & cause damage
CBD products including topicals
Medical Marijuana (where legal)

It is best to consult with a physician prior to engaging in any forms of treatment.

SURGICAL TREATMENT

Surgery for NTOS is usually offered after all conservative treatment measures have been exhausted to prevent permanent nerve damage and to improve or preserve the patient’s quality of life. The surgery is extremely complicated and takes place in a very complex area of the body where several vital structures are all packed tightly together in a very small space. With a surgeon who is not experienced in TOS surgery, damage to vital vessels and to nerves that serve the arm and hand can occur and can be devastating. Therefore, of the surgeons available to a patient, it is recommended to choose the surgeon who has the highest level of TOS experience possible. There are very few dedicated TOS centers in the United States and even fewer throughout the rest of the world. Because of this, many patients must travel to other states or other countries for experienced care. However, choosing a highly experienced TOS surgeon gives the patient the highest chance for a successful outcome and the lowest chance for serious complications. Under these circumstances, TOS surgery can be very safe and successful. For help finding a TOS surgeon, click here.

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What does surgery for NTOS entail?

In general terms, NTOS surgery is often referred to as thoracic outlet decompression surgery as it involves removing anatomical structures and scar tissue in order to decompress the nerves. Surgery typically involves a hospital stay of 2-4 nights on average. There are actually several components to NTOS surgery. Depending on the patient’s findings and the surgeon’s protocol and experience level, NTOS surgery includes some or all of the following:

Removal of the first rib known as First Rib Resection (complete or partial)
Removal of cervical rib, if present, known as Cervical Rib Resection (complete or partial)
Removal of the anterior scalene muscle known as Anterior Scalenectomy (complete or partial)
Removal of the middle scalene muscle known as Middle Scalenectomy (complete or partial)
Removal of scar tissue from around the nerves known as Brachial Plexus Neurolysis (complete or partial)
Removal of scar tissue from around the axillary-subclavian artery known as Arteriolysis (complete or partial)
Removal of any fibrous bands which are causing compression
Removal of any extra scalene muscle or other compressing structures

Most TOS experts believe that performing all of the above is the best way to achieve a complete and thorough decompression and to prevent recurrence of NTOS. However, there are surgeons out there who believe that first rib resection is not necessary or that scalenectomy is not necessary. Because TOS is not a well-known condition and surgery for it is not regularly performed by most surgeons, there exists a wide variety of surgical component combinations that can be performed for NTOS. For this reason, let’s break each component down a little further:

Removal of the first rib known as First Rib Resection (complete or partial) As far as history goes, removing the first rib is probably the oldest and most common component of TOS decompression surgery. Most TOS experts believe that all or part of the first rib should be removed for most NTOS patients. Complete removal of the entire first rib would help to decompress the nerves and both vessels of the thoracic outlet. However, when the nerves are the only structure that needs decompressing, as is usually the case with NTOS, then typically only the back ¾ (approx.) of the first rib needs to be removed. This is often referred to as the posterior portion of the first rib. Essentially, cutting the rib at the point directly in front of where the anterior scalene muscle attaches to it and removing it from that point all the way back to where the rib attaches to the spine should suffice. Most TOS experts agree that removing any less of the first rib can be problematic as complete decompression of the nerves might not be achieved. In addition to not achieving complete decompression, some TOS experts have also experienced that any amount of posterior rib that is left behind can become an attachment point for post-surgical scar tissue. If scar tissue attaches to the remaining rib, it can compress the nerves again and result in a return of symptoms. Therefore, removal of the first rib can be a twofold component of NTOS surgery – (1) decompressing the nerves and (2) preventing recurrence if scar tissue forms.

Removal of cervical rib, if present, known as Cervical Rib Resection (complete or partial) A cervical rib sometimes contributes to NTOS nerve compression. Most TOS experts will remove the cervical rib in addition to the first rib. It is usually removed in its entirety. However, certain surgical approaches can limit access to the entire cervical rib and thus partial removal might only be possible. As with the first rib, this might not achieve complete decompression, and can also be a risk to become a scar tissue attachment point which can compress the nerves again and result in return of symptoms.

Removal of the anterior scalene muscle known as Anterior Scalenectomy (complete or partial) Because the anterior scalene is attached to the first rib, in order to remove the first rib, it must, at a minimum, be detached from the first rib. Whether it also gets removed either partially or completely is up to the surgeon. Detaching the anterior scalene from the rib but not removing it is called anterior scalenotomy. Almost all TOS experts agree that either some or all of the anterior scalene muscle should be removed for purposes of complete decompression of the nerves. In addition, some surgical approaches limit access to be able to remove the entire anterior scalene muscle. Some experts argue that partial removal of the anterior scalene is enough to provide long-term significant symptom relief. Other experts argue that, despite any initial symptom relief, symptoms can return later down the road as there is a chance for the remaining part of the scalene to reattach to other structures and again cause compression. This has been a consistent finding during reoperations on patients who had either prior partial anterior scalenectomy or anterior scalenotomy.

Removal of the middle scalene muscle known as Middle Scalenectomy (complete or partial) Because the middle scalene is attached to the first rib, in order to remove the first rib, it must, at a minimum, be detached from the first rib. Whether it also gets removed either partially or completely is up to the surgeon. Detaching the middle scalene from the rib but not removing it is called a middle scalenotomy. Some TOS experts believe that it is unnecessary to remove the middle scalene at all and that simply detaching it from the first rib is enough to provide long-term significant relief. In addition, some surgical approaches limit access to be able to remove the entire middle scalene muscle. Other TOS experts believe that either some or all of the middle scalene muscle should be removed for purposes of complete decompression of the nerves particularly since there are a few nerves that run directly through the middle of the middle scalene. Those same experts argue that, as with the anterior scalene, despite any initial symptom relief, symptoms can return later down the road as there is a chance for the remaining part of the scalene to reattach to other structures and again cause compression. This has been a consistent finding during reoperations on patients who had either prior partial middle scalenectomy or middle scalenotomy.

Removal of scar tissue from around the nerves known as Brachial Plexus Neurolysis (complete or partial) Almost all TOS experts agree that either partial or complete neurolysis of the brachial plexus nerves should be done for complete decompression. Complete neurolysis means that scar tissue has been removed from all five brachial plexus nerve roots. Some surgical approaches limit the access needed to remove scar tissue from all nerve roots which usually means that only the lower three roots have scar tissue removed. Some TOS experts argue that partial neurolysis should be enough because the lower three nerve roots are the nerve roots most commonly affected by NTOS. Other TOS experts argue that all five nerve roots should have scar tissue removed because all nerve roots can be affected by NTOS and that any nerve roots left with scar tissue encasing them would not be fully decompressed and would therefore continue to cause symptoms.

Removal of scar tissue from around the axillary-subclavian artery known as Arteriolysis (complete or partial) Even though a patient might be primarily undergoing surgery for TOS nerve compression, it is not uncommon for these patients to also have some level of scar tissue around the axillary-subclavian artery as the nerves and the artery are right next to each other. This is not considered to be ATOS, but most experts will go ahead and remove any scar tissue from around the artery if they see it while decompressing the nerves.

Removal of any fibrous bands which are causing compression Fibrous bands are commonly found connected to different structures within the thoracic outlet of many NTOS patients. Most TOS experts would agree that any fibrous band contributing to compression should be removed. However, depending on where a band starts and ends, some surgical approaches might limit access to be able to remove it. As with the scalene muscles, some TOS experts believe that partial removal of a fibrous band comes with the risk for it to reattach to other structures and again compress the nerves resulting in return of symptoms.

Removal of any extra scalene muscle or other compressing structures The most common structure to fall into this category is an extra scalene muscle known as a scalene minimus. Most TOS experts agree that removal of a scalene minimus muscle should be performed for complete decompression. However, depending on where it attaches, there is a small likelihood that it might not be fully accessible with certain surgical approaches.

As with any surgery, the decision to have surgery and which components should be included in said surgery should be made based on advice given by the patient’s surgeon as to what is best for their specific clinical situation.

NTOS Surgery Recovery

In general, recovery from NTOS decompression surgery is a bit different from most more common surgeries due in large part to the fact that it involves the brachial plexus nerves. Your run of the mill orthopedic surgery or gallbladder surgery recovery usually involves a linear steady line of progression with the worst being day 1 of surgery with steady improvement from that time forward over the course of several weeks. This is usually not the case with NTOS surgery. Nerves, especially near the brachial plexus, have a very complicated and somewhat turbulent regeneration process. Complete nerve healing for sites at the brachial plexus can take up to 2 years or longer. The recovery trajectory is typically not linear. Instead, it bounces around more like a roller coaster. It is very difficult to predict what each patient’s recovery will be like, and it is different for each patient. Here are some factors that can affect a patient's recovery:

Age. Usually, the younger the patient, the faster and easier the recovery is.
How long the nerves have been compressed
How bad the compression and symptoms are
How much scar tissue there is to be removed
How sensitive the patient’s nervous system is
What is done during surgery
Experience and skill of the surgeon

Following NTOS decompression surgery, the nerves will be decompressed, but this does not mean that they are healed. The typical NTOS patient has nerves that have been compressed for several years, and despite being decompressed, they still need to heal from the damage sustained from the compression. The nerves also get worked on and manipulated during surgery particularly when scar tissue is removed from them, so they must heal from this as well. For this reason, many patients will experience pain and symptoms that are temporarily worse than before surgery which is normal. Below is a list of expectations following NTOS surgery keeping in mind that every recovery is different and not everyone will experience the things listed.

Symptoms

can and will include original symptoms the patient had pre-op in addition to new symptoms caused by the surgery
some pre-op symptoms can temporarily be worse than before surgery
new symptoms can be felt in the neck, chest, upper back, shoulder, arm, or hand
new symptoms from surgery can include numbness, tingling, pain, burning, skin hypersensitivity, itching, stinging, electrical zaps, cold sensations, hot sensations, skin color and temperature changes, muscle twitching, neck and upper back muscle tightness, inability to use arm, hand or fingers
can be unpredictable – symptoms can change daily in type, location, and/or intensity. New symptoms can pop up weeks or even several months into recovery as the nerves enter different phases of regeneration.
Some loss of arm strength and range of motion. Some can have full range of motion immediately after surgery, and some can have very little to no range of motion. But most fall somewhere in the middle. Most do PT to regain arm strength and range of motion.
Immediately following surgery, shoulder blade pain is usually the most complained about symptom. Almost every patient has this.
Low energy and general fatigue with activity. For some, this can last for several months.
Can take several months to notice significant improvement and for some patients up to a year or longer
Not uncommon to still experience some level of symptoms including flares of symptoms during the entirety of the healing phase.

Pain Patterns

In general, pain-wise, usually the first 4-6 weeks are the worst
Most patients generally fall within one of these groups:
- Pain is immediately quite bad right after surgery & stays that way for the first several weeks
- Pain is not too bad initially but slowly increases peaking around days 7-10 post op & stays that way for first several weeks
- Pain is relatively mild until around 3 weeks post op when it spikes & stays that way through week 8
The difference in pain patterns is usually due to the timing of the nerves “waking up” after surgery. The first step in nerve healing is usually a dormant resting phase prior to the regeneration phase. The symptoms tend to get worse once the regeneration phase begins.
Usually a cycle of “good” days and “bad” days where a patient can feel like they are really making progress and then the next day feel like they are completely back at square one. Eventually, there are more good days than bad days.

Restrictions

Most return to work anywhere from 4-12 weeks post op depending on how physically demanding the job is and how well the nerves are healing
Most have weight restrictions of no more than 5-10 lbs for at least 4-6 weeks. This usually includes lifting, pushing, pulling, etc.
Most have activity restrictions including no overhead or above shoulder activity and nothing repetitive for at least 4-6 weeks
Most are able to return to driving by 4 weeks post op
Restrictions are at the discretion of the surgeon as to when they are imposed and when they are lifted. It can be different for everyone as the surgery and recovery is not a one size fits all.
Putting too much stress on the nerves and overworking them can lead to delayed healing and risk of scar tissue formation around the nerves leading to compression and resulting in return of symptoms. Therefore, any activity that causes a significant increase in pain and symptoms (particularly nerve symptoms) should either be avoided or done with extreme caution. This includes PT which should be discussed with the patient’s surgeon and physical therapist.

Despite the fact that NTOS surgery recovery can be difficult and long, the ultimate outcome is usually more than worth it. Surgery is not a quick fix and the recovery often requires commitment, discipline and patience, but it can give patients their lives back.

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Return of Symptoms (Recurrent TOS)

Sometimes a patient will experience initial relief and then have symptoms return. The two most likely causes for a recurrence of symptoms are:

Complete decompression not achieved during surgery this would occur as described earlier on this page when some anatomy, usually rib or scalene muscle, was either not removed at all or only partially removed.

Scar tissue formation around the nerves this is most likely to occur within the first 1-2 years post op. It can occur from the patient overusing the nerves too much too soon while they are still healing. It can also form if a secondary injury occurs such as a fall or a car accident or any injury to the chest, neck, shoulder, or arm. The injury can reignite the healing process within the surgical field and an overgrowth of scar tissue can occur. It can also form in those patients who have a genetic predisposition to make a lot of scar tissue.

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Neurogenic TOS Treatment