Feedback surrounding surgery

[Mary J]

Hi, all. My husband has to have durgery on his deviated septum because he is experiencing severe pain whe he wakes up due to what we presume is extra mucus build up...he has had the deviared septum for 30 years, but has gotten progressively worse in thd past six months. His breathing in grneral is still very manageable. That said, does anyone have any revelationz to share regarding surgery in general on PALS? Thank you!

 

[krnNdug]

I just talked with my Dr. (at my ALS clinic) about my upcoming surgery today. He said to let the anesthesiologist know I have ALS and to try to go light on the anesthesia and to minimize my time being under, if possible, just because it will suppress my breathing. He did say that if I was more advanced he would suggest doing it in a hospital, not an out-patient surgery center just in case.

Doug

 

[affected]

Mary last time you posted you did not have a diagnosis?

 

[Mary J]

He was diagnosed in December.

 

[affected]

Sorry to hear this Mary

You might update your profile that he is diagnosed and the date as when we see your posts here it just says you are interested in learning about.

Without knowing what his breathing issues are or are not I'm not sure what to say about surgery. Many PALS have had to have surgery of one kind or another and hopefully they can give feedback.

 

[GregK]

One concern, for which I have inadequate knowledge, is the use of O2 during surgery.
Has your hubby's ALS impacted his breathing?,

 

[starente15]

Hi Mary. Sorry you received the diagnosis. My dad was diagnosed in October and had to have a "simple" prostate surgery shortly after. It's important the doctors and anesthesiologist know your husband has ALS. In our case they found the day before surgery (dont ask) and he almost wasn't able to get it.

He has breathing issues mainly and when they gave him O2 his body couldn't process it and the CO2 built up. It took 11 hours for him to wake up. Going forward he's been told he can no longer have any surgery that requires being put under. Ask questions to the anesthesiologist about O2 and their experience with ALS patients. Good luck.

 

[gooseberry]

Hi Mary, I would suggest you ask the doctor you are consulting with if they see als patients and if they are used to dealing with the specific complications that can arise. Then depending on the response you receive, I might ask, so you understand he can't have oxygen during surgery because he will retain co2, he needs increased ventilation not oxygen, etc. I would offer your neurologists number so they can discuss potential complications before he has the surgery.

 

[Diane H]

Giving an ALS patient oxygen doesn't cause CO2 retention and is only a problem if the persons breathing has been bad enough that he already has elevated CO2. Even if that is true low levels of oxygen (less than 2 liters per minute) are considered safe. It is advisable for an ALS patient with breathing problems to have his CO2 levels checked a few days before surgery.

 

[gooseberry]

You are right Diane. I didn't explain very well. Mostly my point was to ask some general questions to see if they understood there could be complications that are different than they might expect.