Hi everyone! I haven't posted frequently because I was in school and was overwhelmed with classwork. I did well in college managing the pain levels this semester but in March my pain levels got worse. I'll cover my college accommodations and pain management techniques in another post. Early February I took a trip to Boston Children's yet again to talk to the Interventional Radiology team about more possible treatment options to help with the persistent stabbing, throbbing, and nerve pain that accompanies my FAVA in my upper thigh and buttock. After having my previous cryoablation done last September like I mentioned in my "New contrast shows more cryo" post, the ultrasound showed treated lesions next to untreated lesions. Therefore, it was uncertain whether or not my pain was coming from the treated lesions, untreated lesions, or both. In simple terms, we were trying to figure out whether or not the cryoablation was successful in eliminating my pain where my lesions were and labeling it a successful treatment option for me or not.
With this question at play the course of action was to inject steroid injections into the locations of the lesions (combining the locations where I had the most pain with the ultrasound imaging with contrast) in order to provide me with temporary pain relief. The theory behind the steroid injections was if they injected the untreated lesions and I had pain relief, then they would know that the cryo had worked in relieving my pain and the chances of another cryo procedure being successful in the future would be significant enough to continue with that treatment option.
March 16th I had the steroid injections done at Boston Children's with high hopes of it either masking my pain or making no difference. I was a fairly easy day procedure that I did over spring break where I was sedated instead of having general anesthesia. The steroid agent used was 60 mg of Kenalog and 13 mL of Marcaine. To my surprise I woke up in a massive amount of pain and stayed until my pain was managed. It was expected for me to have immediate relief within a couple days however I feel like I took a major step backwards. My pain levels along with the frequency of the pain unfortunately has increased drastically since before the procedure and my walking was impacted greatly. I had to use my cane to walk for a few weeks. With time, the inflammation and bruising went down. It took about 2 months and I'm slowly increasing the amount I walk using my fitbit (that has been a lifesaver may I add).
So, now what? Since the steroid injections, interventional radiology has declared the previous cryoablation unsuccessful and we have canceled the plans for the future cryo that I had planned for the summer. They referred me back to my orthopedic surgeon, Dr. Spencer, who I admire and trust greatly. She is willing to do another resection and cut out the lesions since that has been the only treatment option that has been the most successful. I also contacted my plastic surgeon and spoke about the advantages to add more tissue/aloederm over the sciatic nerve for added protection as well.
FUTURE LINKS AND TREATMENT!
FUTURE LINKS AND TREATMENT!
It was also brought to my attention in March that the team is thinking about doing a research study on possibly using Sirolimus to treat FAVA patients in the future. A recent article on the genetic mutations of FAVA was recently published claiming that Cloves syndrome, Klippel Trenaunay Syndrome, lymphatic malformations, and FAVA all come from the same genetic mutation called PIK3CA. They have been using Sirolimus for CLOVES, KTS, and lymphatic malformations which leads them to believe that it might be successful for FAVA patients. It's great to hear that they might have more treatment options for FAVA patients who don't respond well to cryoablation, sclerotherapy or who are unable to get resections. It's been interesting to see how many FAVA patients have had amputations as well due to the pain FAVA has brought into their lives. Although that is not an option for me due to the location of my FAVA, it is so encouraging to hear the positive results of being pain free from having the limb amputated.
However, it is important to remember that EVERY case of FAVA is different and treatment results may differ from case to case. Unfortunately, resection is the only beneficial option for me at the moment but I've heard of patients responding well to cryoablation. Here is a study about cryoablation by my surgeon Dr. Shaikh who is so kind and who I respect and admire his dedication to helping FAVA patients with whatever he can do to help. There are other links to this study if you google it but this one was the easiest for me to link here.
Also, FAVA is now on Wikipedia! So a simple google search will finally give a brief overlook of the illness! Yay! Take a look!
And yes, I will be posting more often,
Becca #favahugs
Becca #favahugs
