It sure has been a while since I wrote a blog! I was busy living life and waiting on MALS surgery. I am excited to say that I had a successful MALS surgery on June 6th, 2022. After enduring over 60 celiac plexus blocks and massive pain, nausea, and horrid symptoms of the disease I am happy to say it is over! I woke up from surgery and within 24 hours was relieved from nausea and high blood pressure that hopefully proves my other illness POTS is cured. My pain was mostly surgical and I could tell the MALS symptoms were gone the first week. It was incredible. I felt less pressure, and less bloating. I had a severe gas (farting) problem before surgery and now I am so happy to say it is gone! I am only two weeks in and I am so happy with the results.
I am having surgical pain and am on bed rest and will be for a while. So far I am being told a month to two months is normal to be down. It is summer in Arizona so we are locked in the house until the end of September so I have plenty of time to rest. I am just bored. I am getting an early taste of what life is like healed from this disastrous rare disease and am ready to get out there and live!
MALS has been a horrid problem and illness I dealt with my whole life. In high school, nausea ruled my days and I had to change my entire schedule senior year because I could not get out of bed to get to school on time. In college, I threw up more than I can count in almost everywhere around campus because I refused to let this disease ruin my college experience. I just ran from bathroom to bathroom some days when the nausea was so bad. Then when I began working, I got better insurance and got diagnosed with many illnesses, but never MALS. However, Zofran entered my life and I was able to live. I still had severe nausea from my teenage years to surgery just two weeks ago. I was taking anywhere from 20mgs to 100mgs of Zofran a day to stop nausea. That’s how bad it has been. I refused to let nausea ruin my life and lived on Zofran from 2012 to now. However, it all comes to an end because since surgery I have only needed three zofran in two weeks. What a difference that is. I will be able to live life on better terms.
Never knowing what caused all this caused so much mental anguish. I tried every diet, every pill, every workout, and every tincture and potion the natural path threw my way, yet I never got better. Once MALS came into my life, everything changed. For the past seven years, I have been doing celiac plexus blocks to stay alive. With the blocks, I was able to live life and work. The disease became unbearable a few years ago as the blocks stopped working so well. I needed more and way more frequently than normal. That is when I decided to look into surgery. Originally we thought I would have to have surgery in Connecticut but I was able to find a doctor in Arizona this year in 2022. We moved really fast. I saw him with already being diagnosed with MALS which came two years ago via an ultrasound. I was officially diagnosed and cleared for surgery then. When we found Dr. Brian Prebil in Peoria, Arizona I knew I was ready for surgery. I have to thank him for saving my life and giving me the best gift anyone can give another person; Freedom from a life of misery and pain. The mental pain I experienced is healing now that I am healing. I am not as angry and mad, now I want to share my story so everyone knows about MALS and no one ever suffers as I did. I want to change how people are treated in hospitals with chronic illnesses and I want to be a part of making a difference. Someone has to lead the change in how patients with chronic illnesses are treated. That would have changed my story and my path if just one of these hundreds of doctors I saw over the course of my life knew about MALS.
Dr. Prebil and his entire team are amazing and he really gave me my life back. I have not had my follow-up yet to learn about what he did for surgery. Once I know what all was done I will post that for other MALS sufferers to know. I know the aorta was pretty compressed and there were a lot of muscles and tissues grown over it that they removed and cleaned up. I am not sure how bad the nerves were but I am anxious to find out that one! As those were the main reason for having surgery. I know surgery took an hour and a half and I did very well. My lungs took a little beating and I am working on deep breaths and walking to build them back up. The downfall is I can only walk around the house as it has been insanely hot in Arizona and going outside is not an option. Even at night, it's too hot for me. Summertime in the desert! It’s amazing when you can enjoy it but being on bed rest and locked inside is hard! I will call Dr. Prebil’s office next week to schedule my follow up and once I see him I will post another blog.
Overall, I am happy I had surgery. Mine was done robotically and laparoscopically so much less invasive than the doctor in Connecticut as he has to cut the patient from stern to abdomen and I did not think that was a good option for me. I needed the most painless procedure possible. I have a sphincter of Oddi dysfunction and pain meds trigger it. I have been using medical marijuana to deal with my pain and small amounts of hydrocodone. That is working very well. I was hoping the marijuana would make me hungry but it is not doing that. I did lose my appetite but I am dealing with it. That is probably the worst side effect of surgery I am dealing with Is not being hungry and my taste buds being off. I hate force-feeding myself however, it must be done.
I am looking forward to what they call life 2.0!!! I just say I am looking forward to my new life and living it! We love to travel and now I will be able to since I will not be tied to marijuana for pain. I will not have the pain I had so, therefore, I can go out of the country again and not fear that anything will happen to me. I was fortunate that while having MALS I did travel a lot and I never had an incident overseas. I was blessed with that miracle. However, now I will not have the worry and stress of the illness that is now cured! I am looking forward to getting back into Pilates and swimming and doing exercises that I never could do because of the MALS pain. I am looking forward to eating food and not feeling like I am going to die. No more hospitals, needles, or doctors!! What a life that will be. The happiness I feel is the best.
I look forward to keeping up with my blog now that I have some free time. I will continue to document my MALS surgery and what my recovery is like so that way others who are having surgery will know what to expect.
Thank you for listening to me and being A part of my journey!
Sarah