Serious Venous Neurogenic Thoracic Outlet Syndrome Needed

**FOR MOST UP TO DATE INFO INCLUDING UPDATED DIAGNOSIS SEE UPDATES**

Hi, my name is Shae and I'm raising funds to help my 28 year old husband and father of two young kids access treatment to help him get his life back.

Tanner's Story

In December 2020, two months before our daughter was born, Tanner was struck as a pedestrian while leaving work. At the time only a leg injury was treated. A few months later as Tanner regained his mobility in his right leg we thought that the accident was behind us.

In July 2021 Tanner began experiencing pain, discolouration, and swelling in his arm. When he went to the ER a blood clot was found in his subclavian vein (only about 10% of blood clots occur in upper extremities). Initially it was treated with oral blood thinners, but when these were ineffective he moved to 6 months of injections. The doctors believed it was the result of being immobile with his leg from the accident. We breathed a sigh of relief again when the ultrasound finally showed that the blood clot was gone...but Tanner continued to experience symptoms and they started to get worse.

The veins in his chest started to protrude, his level of pain was increasing, and the swelling and discolouration continued to worsen. It was then that his doctors diagnosed him with Post Thrombotic Syndrome (experiencing lasting symptoms after a blood clot). There's no treatment for this and it doesn't pose any health risk, it's just "annoying" he was told.

After multiple trips to the ER for loss of sensation in his right hand, tremours, and shortness of breath another blood clot was found in fall of 2022. The radiologist told Tanner that it was only 2cm from his heart valve and immediately placed him on complete bedrest in an attempt to avoid having the blood clot travel to his lungs. It was then that Tanner was told that surgery would be the only option for treatment.

I started to question if there was more going on. Doing my own research I came across Thoracic Outlet Syndrome, but no doctor could confirm if this was the case or not.

While waiting to see the vascular surgeon Tanner's symptoms continued to worsen and he was put on narcotics to treat the pain after nerve blockers and CBD were unsuccessful. In December 2022 he was finally seen for consult after the family doctor and ER doctors attempted to speed up the referral. The surgeon agreed that it was likely Thoracic Outlet Syndrome and sent him for a venogram only 4 days later. This was supposed to tell the surgeon exactly how she was going to operate, but unfortunately in January 2023 (the day after our son was born), Tanner was told that he did in fact have Thoracic Outlet Syndrome but that he was too complex of a case for her so she referred him to another doctor who specializes in Thoracic Outlet Syndrome.

Comparison (Left side normal):

View of Right Side:

High Contrast View Right Side:

We called relentlessly to try and speed up the referral to this new surgeon and because of Tanner's still worsening condition and need for opioids to treat the pain he was seen in April 2023. We thought we were going to get the ball rolling on the surgery, but instead this doctor told him that he wasn't a candidate for surgery and that he'd never seen anything like this. Tanner's body had tried to reroute its own vascular system around the clot and the affected vein was now concrete and useless. His new veins are only functioning at 15% capacity. The surgeon worried if he removed the rib (which we were told was the only surgical option in Canada) that it could affect the new veins. The most discouraging part was being told that the surgery would have been an option if it had been found a year prior. He sent him to a physiotherapist who also specializes in Thoracic Outlet Syndrome with that being the only course of treatment left. The physiotherapist told Tanner that she's also never seen anything like this in her career, that he was on the verge of a frozen shoulder after losing range of motion, and that his muscle tone was equivalent to a 70 or 80 year old. The physiotherapy has only made already difficult activities of daily life like showering and brushing his teeth more difficult. This just didn't feel like something we could accept as the end for Tanner.

With the support of our amazing family health team we had Tanner referred down to Boston for a second opinion on the accuracy of the diagnosis and were hopeful that surgery might be an option there. Massachusetts General Hospital has pioneered much of the research in relation to Thoracic Outlet Syndrome, has developed new imaging techniques to more accurately diagnose the condition, and are a global referral hub. You can read more about Thoracic Outlet Syndrome and the program at Massachusettes General Hospital here:

https://www.massgeneral.org/surgery/thoracic-surgery/treatments-and-services/thoracic-outlet-syndrome

How Has Thoracic Outlet Syndrome Impacted Tanner's Life

His inability to use his right arm has made it difficult for Tanner to be the father he wants to be and to engage in regular care activities with our kids. This makes it really difficult for him to bond with our children. You can see the sadness in our toddler's eyes when she's desperately begging for daddy to hold her, rock her, or play with her and she's being told that he can't.

He's also lost his independence, his hobbies, and his income with the severity of his Thoracic Outlet Syndrome which has seriously impacted his mental health. Going from being very active to on rest and restrictions for the majority of the last three years saw Tanner go from 180lbs to 250lbs.

Tanner Before Thoracic Outlet Syndrome:

Tanner also lost his income along with his job and has been unable to work. Surviving on savings and a single income has put significant financial stress on the family. With the increasing costs of groceries, utilities, and child necessities the financial pressure has become overwhelming. All doctors and the physiotherapist agree that Tanner is in no position to return to work of any kind at this time.

Tanner also has Tourrette's Syndrome which hyperfocuses his tics in his right side of his neck, right shoulder, and right arm/hand which further increases the pain.

Thankfully we FINALLY have a treatment plan in place for Tanner. He will have surgery IN CANADA!!! 5 specialists, 4 years, and one very hopeful family later he is receiving surgery November 15th, 2024!

How Will The Funds Be Used

The base cost of a virtual second opinion is $950USD. The cost to add a neurologist into the consult (for Tanner's Tourettes & Epilepsy) increases the cost, and for each additional concern (more questions to be answered) the cost further increases. The majority of our initial fundraising will be used to support this.

Other funds will be used to support Tanner's physical therapy, psychotherapy, and medication costs.

Funds may also be used to support costs of living as a result of Tanner's total loss of income for 2 years and decreased income this past year.

For donors who would prefer to donate to us directly to ensure that the entirety of your donation comes to us, please use the "Contact" button below and we will provide an option for e-transfer. We will never ask for or accept cash or credit card donations.

Our family appreciates any and all support you can offer.

**Be sure to check back periodically for updates on Tanner's condition, his treatment, and (hopefully) his recovery.**