Have you had any surgeries since being diagnosed with ALS?

[Francine]

Hi, my husband, who passed away from ALS in March of 2020 had to have his appendix removed when he was at the point of already being in a power wheelchair and had a feeding tube. He was consistently also using a bi-Pap machine at night etc. He had symptoms in the afternoon but did not want to call the doctor yet. He woke me up at 2:30 in the morning with severe pain. I had to load him into his wheelchair and then into the wheelchair van and take him to the ER.

They operated on him that morning and the infection in his appendix was so severe that they had to leave a drain in. He was very distressed to have one more tube in him and he was determined to get it taken out as soon as possible. The doctor warned him/us that because of his respiratory status, he might not be able to breathe on his own to come off the respirator. He was determined. He went into surgery at 8:30 am and we were not able to see him until 5 PM. He was still on the respirator. They were hesitant to take him off. It took some fast talking, to get an anesthesiologist to come in after hours to monitor his extubation. They were fully set up and prepared to re-intubate him if needed. This was all very scary and stressful.

Good news though. He woke up and was able to breathe on his own. All in all a very challenging situation. Not recommended if it can be avoided!

Francine

[Shawn]

I am a 57 year old slow progressor with upper limb onset diagnosed in November 2020. I was able to continue to play ice hockey for a couple years before my hip started giving me severe pain (related to 50+ years of playing hockey rather than ALS). I was diagnosed with advanced osteoarthritis in my right hip. My hockey days were over (honestly I was glad it was the hip and not the ALS that ended my hockey career :-)) and multiple physical therapy interventions were not able to resolve the severe pain in my hip. While it was well understood and discussed with my care team that is generally preferred to avoid major surgery with an ALS diagnosis, I made the decision that I was willing to risk acceleration of progression in order to resolve my issue with a hip replacement. The surgery in July 2023 which was completely successful and I am now blissfully pain-free in the hip. Fortunately, I did not experience any observable acceleration or exacerbation of my ALS symptoms or progression related to my hip surgery. Since then, I have literally traveled the world and have been extremely happy that I elected the surgery so that I could continue to live my life to the fullest. That said, major surgery needs to be carefully considered for any ALS patients so please have a deep discussion with your care team prior to pursuing surgery.

[Paul Tavano]

I am a slow progresser and had a hernia operation that I had been struggling with for a couple of years. My breathing has not been affected by my ALS. My Dr. was well aware of my condition and decided to do the surgery in the hospital instead of a surgery center in order to have full emergency equipment access. I had no issues and am now pain free.

[Jim Knepp]

I have a chronic wound on the outside of my right ankle, and I have been hospitalized 4 times for wound care since being diagnosed with ALS in April 2014: twice for a total of 12 days at the Gainesville VA Hospital for iv-antibiotics; and twice for total of 8 days at non-VA hospitals for skin-graft surgery. Although none of my hospitalizations were directly related to my ALS, my ALS had a large impact on each of my hospitalizations.

1. Other than one stay in a specialized room and area for minimally mobile patients at the Gainesville VA Hospital, I found that normal hospital rooms and handicap hospital rooms are not designed with pALS patients in mind – normal hospital rooms and handicap hospital rooms are for normal or handicapped patients, and pALS are not likely to fit in either category.

2. During my first hospitalization at Gainesville, I had a biopsy of my ankle wound. The VA biopsy MD looked at the wound and said “Looks like cancer to me”. When he said the “C” word – I panicked, got lightheaded, and began to faint. The VA biopsy MD instantaneously directed his RN to give me oxygen. Non-verbal me had enough presence of mind to grunt “NO”, and type on my iPad app that you have to be extremely careful when giving oxygen to a pALS. I later checked the CV of the VA biopsy MD. Although he had been an MD for more than 25 years, he made the standard medical decision of being quick to administer oxygen to a fainting patient. But I wasn’t a fainting patient – I was a pALS patient.

3. I am fairly certain that I was the first pALS in-patient that most if not all of the RNs and other medical staff at the hospitals had dealt with. I do know that during her almost 35-year career as an RN at the same hospital, Joanne (my Wife) had never had a pALS patient before me.

I discovered that many healthcare providers know little to nothing about ALS. This means they need to be constantly educated about my respiratory needs so they don’t inadvertently do me harm. I have a “hospital sign” from the ALS Association which staes in big, bold, red letters that I have ALS; do not give me oxygen; I sleep with a trilogy; I eat and take medications by mouth; although I cannot talk, I can understand and communicate via an iPad app; and that I have weakness or immobility in my arms and legs. I will post the “hospital sign” so that it is obviously visible – for example, over my bed if I am ever admitted to a hospital again.

I have been told to assume that I know more about ALS than any EMT, Paramedic, RN, MD, or other medical personnel, and that I should be prepared to educate them if necessary – because my life may depend on it.

[Francine]

I whole heartedly agree with you. We found that most, if not all of the people that cared for my husband in the hospital had little to no understanding of ALS, the implications of O2 therapy, or the special care needed by Pals. They did not understand the B-Pap machine and did not readily understand the importance of my presence to interpret for him and to facilitate communications. It was a constant challenge to communicate in a way that was not just interpreted as an interfering bystander.

Having that list of important points is very helpful if you can get them to read it. I found it especially difficult in the ER, where they just left him lying flat with no blanket. Fortunately, this was pre-covid and I was able to stay by his side.

My wish for all with ALS is that you have someone who is able to be your advocate and stick by your side.