KevinM
Senior member
- Joined
- Mar 30, 2019
- Messages
- 559
- Reason
- PALS
- Diagnosis
- 06/2019
- Country
- US
- State
- FL
- City
- Tallahassee
Hello everyone. Apparently, I am the king of rare pathologies, and I would appreciate any thoughts on a decision I must make. Sorry in advance for the long post, but there is a lot to describe.
I was diagnosed 8 months ago with LMN dominant ALS, and thus far still have good function. No bulbar or breathing issues, arms and legs still work. Progression is more systemic weakness and some atrophy in both shoulders, but other than that I’m holding my own.
In 2016 my colonoscopy revealed diverticular disease in sections of the sigmoid colon, and two months ago I developed an uncommon colovesical fistula (a small opening) between my bladder and colon caused by diverticulitis. Essentially, air and small amounts of fecal material leak into my bladder, so I occasionally have air and/or debris with my urine. My symptoms are more annoying than uncomfortable, and I manage them with very little discomfort with daily GasX and a couple of Imodium.
For healthy people, surgery is recommended, but this is very major surgery involving colon resection, a week’s stay in the hospital assuming no complications, significant weight loss, and about a 2 month recovery period to regain strength/weight. It is a much more involved and difficult surgery than a resection for colon cancer, even though it is of benign pathology. The likelihood of accelerating my progression from this type of surgical trauma is high in my opinion.
Alternatively, conservative management through intermittent antibacterial therapy is often used and has been the treatment for me for the past couple of months. Nevertheless, I decided to have a consultation yesterday with one of the more renowned colorectal surgical specialists in the country, Dr. Thomas Read of UF Health (Shands hospital in Gainesville FL) to get his opinion on whether or not I should consider surgery since I’m still healthy enough for intubation, etc. He said that if I didn’t have ALS, he would recommend surgery, but I’m right in that it could advance my ALS progression. But he also said chronic, low grade infection/inflammation, which I will always have as long as the fistula is present, could accelerate progression as well. Bottom line is he doesn’t know enough about ALS to make a recommendation how to proceed. Either way, I run the risk of speeding things up either way.
I’m strongly leaning towards the non-surgical approach, since there are too many unknowns and risks of surgery, but I’d like to get any thoughts from you good folks. Has anyone here had major surgery involving general anesthesia, and if so, did you recover without acceleration of progression? I read one ALS research paper that described significant acceleration of progression in the 3 months after major surgery as compared to the three months prior, but that’s all I could find.
Thanks for any thoughts. Kevin
I was diagnosed 8 months ago with LMN dominant ALS, and thus far still have good function. No bulbar or breathing issues, arms and legs still work. Progression is more systemic weakness and some atrophy in both shoulders, but other than that I’m holding my own.
In 2016 my colonoscopy revealed diverticular disease in sections of the sigmoid colon, and two months ago I developed an uncommon colovesical fistula (a small opening) between my bladder and colon caused by diverticulitis. Essentially, air and small amounts of fecal material leak into my bladder, so I occasionally have air and/or debris with my urine. My symptoms are more annoying than uncomfortable, and I manage them with very little discomfort with daily GasX and a couple of Imodium.
For healthy people, surgery is recommended, but this is very major surgery involving colon resection, a week’s stay in the hospital assuming no complications, significant weight loss, and about a 2 month recovery period to regain strength/weight. It is a much more involved and difficult surgery than a resection for colon cancer, even though it is of benign pathology. The likelihood of accelerating my progression from this type of surgical trauma is high in my opinion.
Alternatively, conservative management through intermittent antibacterial therapy is often used and has been the treatment for me for the past couple of months. Nevertheless, I decided to have a consultation yesterday with one of the more renowned colorectal surgical specialists in the country, Dr. Thomas Read of UF Health (Shands hospital in Gainesville FL) to get his opinion on whether or not I should consider surgery since I’m still healthy enough for intubation, etc. He said that if I didn’t have ALS, he would recommend surgery, but I’m right in that it could advance my ALS progression. But he also said chronic, low grade infection/inflammation, which I will always have as long as the fistula is present, could accelerate progression as well. Bottom line is he doesn’t know enough about ALS to make a recommendation how to proceed. Either way, I run the risk of speeding things up either way.
I’m strongly leaning towards the non-surgical approach, since there are too many unknowns and risks of surgery, but I’d like to get any thoughts from you good folks. Has anyone here had major surgery involving general anesthesia, and if so, did you recover without acceleration of progression? I read one ALS research paper that described significant acceleration of progression in the 3 months after major surgery as compared to the three months prior, but that’s all I could find.
Thanks for any thoughts. Kevin