An ENT surgeon has recommended throat surgery for my husband who has Lewy Body Dementia. The doctor said he could improve swallowing with this surgery. His concern was that he didn’t know how my husband would respond to general anesthesia. In research it is documented that Lewy Body patients have a lower expectation of full recovery after general anesthesia. Has anyone had experience with this? We are thinking against the surgery because of the risks involved from general anesthesia. My husband currently eats smaller bites, softer foods, and high protein shakes without problems. Have other caregivers dealt with this?
I agree with you. My mother had vascular dementia and a life expectancy of about 5 years from diagnosis. She ended up eating pureed foods and passed around the 5 year from diagnosis mark. I would never have considered surgery for swallowing. She got enough nutrition as it was. Surely that's the main point and your hub is getting adequate nutrition.
My late husband had vascular dementia and ended up having to have his drinks thickened and his foods pureed so as for them not to go into his lungs and cause aspiration pneumonia which he had once and almost died from.
So that would be my recommendation to just puree all of his foods and thicken his drinks and let him enjoy whatever time he may have left on this earth.
And I have to say...shame on any doctor that would recommend any kind of surgery on someone that's already dying.
It might be different if your husband had Alzheimer's as that can go on for 20+ years, but Lewy Body is a whole other story.
I wish you well as you travel this difficult road with your husband.
Throat surgery for swallowing difficulties (dysphagia) in Lewy Body Dementia (LBD) focuses on improving, rather than curing, function through procedures like cricopharyngeal myotomy, which relaxes the throat muscle to allow easier food passage. Options include minimally invasive endoscopic techniques (laser) or small neck incisions. These surgeries are considered for specific, severe, persistent muscle issues, but outcomes may be poor in advanced cognitive impairment.
Surgical Options for Dysphagia in LBD
Cricopharyngeal (CP) Myotomy: This procedure divides the cricopharyngeus muscle at the top of the esophagus to alleviate swallowing difficulties, often performed via laser endoscopically or through a small neck incision.
Botox Injections: Botox can be injected into the upper esophagus (cricopharyngeal muscle) to relax it, providing a less invasive, temporary alternative to surgery.
Dilation: For narrowing of the throat, doctors may use a balloon to stretch the area (pharyngoesophageal dilation).
Aspiration Prevention Surgery: In extreme cases, surgical separation of the airway and digestive tract may be considered to prevent choking, though this usually sacrifices vocal function.
Considerations for LBD Patients
Efficacy: While some surgeries can restore, in part, the ability to swallow in cases of chronic, severe dysphagia, patients with significant cognitive impairment may experience poor outcomes.
Initial Approach: Conservative approaches such as speech-language therapy, diet modifications, and managing environmental distractions during meals are prioritized first.
Multidisciplinary Team: Evaluation by an ENT or laryngologist and a speech-language pathologist is essential to determine if surgery is appropriate.
Risks: Surgery is not without risk; for example, open neck procedures carry a risk of temporary or permanent vocal cord issues.
Alternatives: For advanced, progressive dysphagia in advanced dementia, the focus may shift from surgical correction to palliative care rather than invasive measures.
Eye & Ear Foundation of Pittsburgh
Disclaimer: This information is for educational purposes only and does not constitute medical advice. Consult a qualified specialist for decisions regarding surgical interventions for dementia.
My mother had dementia and I would never consider such a surgery for her. I'd get in palliative care and then hospice care when appropriate.
Best of luck to you.
Surgery was never mentioned. He was in hospice care. I understand how tempting it would be to have your husband's swallowing ability repaired. I have no idea what kind of result you'd get, but one thing is for sure - your husband's brain is broken. It can't give the commands for swallowing to happen, or if that hasn't happened yet, it will. So husband has gone through this painful operation and the danger of general anesthesia, and what does it get you? He still has dementia and will still decline no matter what you do to fix various parts of his body. It's his brain that is the problem.
For what it's worth, my husband has severe dementia and is losing his swallowing function after losing many other functions as well. All of his food is pureed now. He will not be having any surgeries to fix him.
Best of luck to you and your husband.