I have been receiving blocks and ablations since 2017 for the treatment of Neurogenic MALS. My celiac plexus region where the nerves all meet for the digestive system are misfiring in my body. Some days it felt like I was experiencing organ failure, pancreatitis and sometimes MALS pain has been described as the same pain as pancreatic cancer. The majority of the pain comes when eating.
The blocks work by injecting medication into the plexus region through a needle into the area through the spine. The medication numbs the nerves to stop the pain. The ablation is done the same way but a tool is used to burn the nerves off to kill them. The medication is inserted into the area to numb the pain as well. My Doctor uses 2% lidocaine, 0.5% Bupivacaine and 8mg of Dexamethasone. This was used on my last ablation. I highly recommend these dosages and medications as I have had little pain since undergoing the ablation a month ago. My nausea is under control, I am able to get up in the morning. My POTS symptoms such as dizziness, nausea in the morning have subsided as well.
I am relearning how to eat food in a healthier manner rather than eat whatever I want when I want. I overate the last two and a half years and I let myself get way too heavy. I have been on the path to lose weight for two years but with no avail, since I would go back to my old routines. I was not holding myself accountable. I used the blocks as an excuse to eat food. I also have the fear of starving to death so I felt safer having more weight on. In case something went wrong I would have enough weight to sustain myself. It has been a mental battle. I finally feel like I am in a safe place to eat better, get back to gluten free and eat less bread. I do not think I can ever cut out bread ever again because I am still limited on what I can eat, sometimes bread is the only thing I will get in my body somedays along with my meal replacement shakes by Life Recovery Wellness.
I am lucky the blocks have been so successful and I have been able to live semi pain-free for as long as I have. I had a consult with Dr. Hsu in Connecticut and he said that since I am doing so well with blocks I was not in need of surgery. He said that I could live on blocks the rest of my life as needed and that if I got worse and needed surgery to contact him again. He wanted the doctor to use a chemotherapy agent but upon consult, with my doctor, he disagreed. He said the chemotherapy agent would cause me to lose bladder and leg function and I was too young and healthy for that medication. I agreed I would rather try another option. So we have been using the new medication combo and I truly agree that it is working well!
I hope that more MALS patients can get the same treatment that I am getting. Find a pain doctor in your area and share my story with them. My doctor will even do a consult if needed. Integrity Pain and Wellness in Scottsdale, Arizona. If you have any questions or want to continue to follow my story as I live life without undergoing MALS surgery follow my blog. I hope to be able to post about my life here for a long time to come.
Wishing you all the best.