Help Kaytlyn get Surgery to Save Her Arms & Lungs

Help Kaytlyn get Surgery to Save her Arms and Lungs
Kaytlyn is 14yrs old, and she has a debilitating condition that causes her arms to turn purple and form dangerous blood clots that travel throughout her body.  The blood flow and nerves to her arms are pinched between her first rib and her collarbone. It's called Bilateral Thoracic outlet syndrome (TOS). She is on blood thinners, oxygen, and experiences severe pain.  She needs life saving surgery that is not covered to prevent further damage to her arms and lungs. She has been referred to multiple Ontario surgeons that perform TOS surgery, but none have felt comfortable performing this advanced surgery.  We have found a TOS specialist at Massachusetts General Hospital, Dr. Donahue. However, the estimated cost is over $294 thousand CAD, and we need your help to save Kaytlyn. You can donate here on gofundme or e-transfer at: 
 
Lack of blood flow in her arms

 

 

July 2020 her Left arm turned numb, purple, cold and painful. It was blood clots and she was started on blood thinner injections. 
Valentines day 2021 her Right arm turned cold, purple and painful.  Dr. Tole her Hematologist found a big clot, 4.5cm long in her right subclavian vein (under her collar bone) and it blocked 40% of the vein, draining blood from her right arm.

 

 

Don’t Put your arms up

 

The Venogram showed that when her arms were above her head 80 % of the blood flow on the left was blocked and 100 % on the right.

Just try to get through the day without raising your arms… This means she needs help to get dressed, brush and wash her hair etc.

 

Thoracic Outlet Syndrome TOS

 

She was diagnosed with bilateral TOS which means  the artery, vein and nerves going to her arms gets pinched off between the collarbone and the first rib and it  is very painful.  Her arms, especially her right, is weak and swollen. The blood flow keeps getting occluded and when blood stops flowing it clots.

 

 

 

 more information about TOS at the end of this page

 

 

 

Chest Pain 10/10

June 13 2021 Chest pain unbearable, crying, gasping to breath. We panicked thinking it might be a heart attack, it was Lung clots. 
She was given oxygen, morphine and a heparin Iv.  She is still on oxygen.

Physiotherapy

We found a Physiotherapist who had TOS experience. Andrea Wojcichowsky in Oakville. She taught us what position to get Kaytlyn into to help her arm(s) pink-up (regain blood flow) after turning blue and what stretches to do to help reduce the pain enough so that Kaytlyn can fall asleep at night.

 

Vascular Surgeons
Dr. Tole has been amazing trying to find a surgeon to perform this advanced operation.  There are only a handful of Vascular Surgeons in Ontario that perform TOS operations, the process to contact and acquire a referral is a very long process. Kaytlyn would get her hopes up that they would operate and help her only to be told no they didn't think they could do her surgery.  TOS is rare, bilateral venous TOS is even more rare and she is complex and young.  Only one Vascular surgeon said maybe, but when she is fully grown. He did an arterial ultrasound and found that not only are her veins and nerves being squished, but the arm arteries as well. He said that she definitely needs surgery but that he was worried about her being so young, that her ribs would grow back.  He normally operates on adults. He takes a piece of the first rib out that is squishing the blood vessels.  He said he wanted to wait until she was done growing.
 
But she is only 14, which means years on oxygen and twice a day blood thinner needles, not able to lift her arms above her head or go to school in person. Let alone the possibility further critical medical complications. What kind of teenage years is that? Not to mention the risk of where the next clot might go. They have been settling in her lungs so far, but clots can go to other places too. So what if the clots go to her heart or brain? 

 

 

United States

 

We researched and found Dr. Donahue, a Vascular surgeon at Mass Gen in Boston. He is one of two Vascular surgeons in the United States that specializes in TOS exclusively for the past 9 years.  He reviewed Kaytlyn's medical records and we quickly had a consultation. Dr. Donahue explained that he would remove her whole first rib front and back on both sides.  He said he removes the whole rib especially in teens so that it can’t grow back and re-occlude. He also said that the longer we waited, the more clots she could have and the more scar tissue to her arteries and veins.  The continued risk that one of these times her arms won’t pink back up, risking permanent nerve damage or worse, without blood flow, she could lose her arm(s).  Also the risk the clots could go to her brain or heart  goes up the longer we wait.  But to get surgery in the United States it is expensive, and we need help.

 

 

HOPE

With the option of Surgery there is now hope that Kaytlyn can be saved and return to some of the activities she used to do and love like kayaking, swimming, singing, making dresses and curling.

Thoracic Outlet Syndrome
Information from TOS Canada Org

Thoracic outlet syndrome (TOS) is a rare disease with a spectrum of symptoms, typically severe pain resulting from compression or irritation of arteries, nerves, or veins. This can happen in one or more of the brachial plexus (nerves), subclavian vein, or subclavian artery. This occurs in the region of the body known as the thoracic outlet—the area between the neck and the axilla (underarm) below the clavicle (collarbone). Compression of a nerve or blood vessels produce different clinical impacts. The symptoms result in significant disability and a profoundly diminished quality of life. Neurogenic TOS (NTOS) results from compression and/or irritation of the brachial plexus, a complex array of nerves. NTOS is the most common form of TOS, occurring in greater than 90% of patients. There can be a wide variety of symptoms, but the most common is severe pain. Pain occurs in the neck, upper chest and/or an arm. Patients may also experience altered sensation, including paresthesias (tingling) or numbness (decreased sensation), most commonly in an arm. Arm weakness and diminished

coordination of the hand may also be present. Some patients will have skin discoloration or abnormal temperature sensation in an arm. Symptoms are frequently exacerbated with use of their arm. Vascular TOS (VTOS) occurs when the subclavian vein (venous TOS) or artery (arterial TOS) are compressed. Symptoms are caused by subclavian vein thrombosis (blood clots) and/or stenosis (narrowing of spaces). Symptoms affect the arm and include swelling, heaviness or aching, and cyanosis (bluish-purple skin colour). Veins in the upper chest and shoulder may be prominent and distended. Arterial TOS symptoms include arm fatigue, distal ischemia (lack of blood in outer parts) of the hand, Raynaud phenomenon (reduced blood flow to fingers), or stroke. TOS is usually caused by a combination of two factors:

Abnormal anatomy that creates compression in the thoracic outlet Injury to the thoracic outlet area. Anatomic abnormalities may be obvious, such as the presence of an additional rib in the neck or an abnormality in the spine at the base of the neck. Some abnormalities may be subtle and difficult to detect, such as abnormalities within the scalene muscles (a group of neck muscles located on either side of the front of the throat) or ligaments within this region. The injuries required to trigger symptoms may also be severe, such as a car collision, or subtle, such as a mild injury from arm activity, uncommon in the general population, affecting 2-3 people per 100,000. Therefore, the required specialty and clinical experience are underdeveloped in Canada. There are no clinics or specialists in Canada who focus exclusively or primarily on TOS. Patients frequently experience a diagnostic odyssey, misdiagnosis, conflicting therapies and direction from varied and multiple health professionals and specialties, and recommended treatments absent of specialty clinical knowledge of TOS treatment and care. Many patients receive incomplete surgeries, which worsen nerve pain. For some, treatments in Canada result in permanent damage. For patients who fail to improve, recommended treatment often shifts to opioid-driven pain management, mental health supports, and disability income support programs. Faced with no other options, some TOS patients travel at personal expense to specialty clinics located in the United States to access TOS specialists to improve their condition and lives.

 

Information from TOS Canada Org