Lymphedema Therapy

At our last post-op appintment when the remaining stitches and Todd’s drain tube were removed, thank God, we spoke with one of the lymphedema specialists for Todd’s range of motion and tightness. She explained that he was having some cording going on and referred him to a local lymphedema therapy specialist. Cording, also known as axillary web syndrome is a common side effect after lymph node surgery. It is caused by the trapped lymph fluid and vessels that have been disrupted. You can actually see the webbing, cordlike structure in Todd’s armpit and in his inner elbow. It is painful and tight running from his neck all the way down to his hand.

The local office verified our insurance and let me know that we were out of network, bummer because there is no other lymphedema therapist near us. They could do the therapy in Orlando, but who wants to make that drive three times a week? Not me, and I do not have that availability anyway, so here we are with a $75 per visit out of network copay that could be more depending on billing. I’m going to refrain as most you know my opinions on insurance by now, but I will say that we cannot afford $225 a week! Todd’s thoughts were that exactly and he felt like he did not want to go anyway. I, on the other hand, thought that this was not a question and the cording situation needed to be taken care of regardless. Obviously we can think of other ways to spend that kind of money. For instance, he needs to start back on the vitamin C IV and the ozone treatments too, they are a little over $300 a week. I just keep telling myself one thing at a time.

This Monday was Todd’s first therapy appointment and it was a two-hour evaluation. The therapist explained the lymphatic system and how it works, what they are trying to do for Todd at these sessions and went over precautions/risk. Some of the cautions, I would have never thought of:

* Maintain a healthy diet – being overweight puts an additional strain on the lymphatic system.

* Do not allow blood pressure, blood draws or injections in the affected extremity.

* Protect against the sun and avoid extreme temperature changes – the increase in temperature will cause an increased blood supply and that will increase edema.

* Be cautious of insects – the inflammation from a bite or sting can worsen lymphedema.

* Protect yourself from injury – wear gloves, avoid cutting cuticles, use an electric razor – with an injury can come infection and since there are no longer filters in this area, infection is easier to develop.

* Avoid restrictive clothing and jewelry – will worsen the already compromised circulatory system.

* Maintain good hygiene – clean with with hypoallergenic soap and do not go barefoot.

In Todd’s case, all of these things can contribute to lymphedema and could worsen those that already have it. Lymphedema is a swelling of a body part due to an accumulation of protien rich fluid that occurs usually in the arms or legs as a result of the lymphatic system being impaired. Secondary lymphedema can occur when surgery to the lymph system is performed, whether one lymph node is removed or the whole dissection is done. It can happen soon after surgery or years later, so it is important to ALWAYS take these precautions. The swelling and inflammation take place when the amount of lymphatic fluid in an area exceeds the capacity of those lymph vessels to transport it. Causing the fluid to leak out and accumulate in the fat tissues just under your skin.

There is no cure for lymphedema but we can take the appropriate measures to minimize the risk of it happening for Todd. This cording condition is curable and we concluded the evaluation visit with the stretching exercises and manual lymph drainage massage that will also help in the prevention of lymphedema. He was advised not to lift any more than 10 pounds with the left arm. It is recommended for him to have an hour therapy session three times a week on Monday, Wednesday and Friday.

At his visit on Wednesday the therapist did the manual lymph message the same as last time. Then they brought in a HIVAMAT machine that allows for an oscillating/vibration type massage creating an electrostatic field in the tissues. It is designed to instantly move fluid and break down metabolic waste which then forces it back into the lymphatic system. It was pretty neat, the therapist is hooked up to the machine that makes her hand vibrate while she is massaging the tissues and Todd “grounds it” by holding on to this metal piece. The machine can also help stimulate the damaged nerves. He finished the session with the stretching exercises. As we left both therapists suggested that we discuss Todd’s skin stretching issue with the plastic surgeon on the next appointment on the 26th. While they agree there is some cording but think it is thicker than most cases and his range of motion is more skin-related as there is only about an inch of original armpit left.

He went by himself today and reported back that they did the same exact routine as Wednesday. So I am assuming we will continue this regimen until his range gets better. And honestly we will only be able to get a few more appointments in and then practice more at home until the next steps need to be taken. Todd is already doing some of these excercises in between visits and I will need pick up on performing the massages.

Please continue to share our story especially with those that you think could benefit in any way. Also, continue to share for the hopes that Todd can receive all the proper treatment and that we can afford the out of pocket expenses. We are truly thankful for all of the support!

https://www.gofundme.com/f/todds-stage-4-cancer-journey