My husband received treatment for head and neck cancer 10 years ago. He’s in remission but the long term effects have caused problems. Now, he struggles with severe orthostatic hypotension; dizziness when standing up and labile blood pressure when sleeping. It’s hard to determine why his swallowing is getting worse, even more so than from his surgeries which interfered with his swallowing mechanism. He had a base of tongue tumor which was rejected. So swallowing was impaired, but now he s primarily existing on Ensure and a small amount of solid food each day, and he says it is getting nearly impossible to swallow. I hate to see him have to return to using a feeding tube, again. His voice is also getting softer, and he often has overproduction of mucous from the irradiation. While these issues have been there for quite some time, there are now other symptoms too. His balance isn’t great, his walking is very slow, and he’s so weak and fatigued. It’s been like this for about 7 years, when the difficulty reared up during a hike in 2015, when he couldn’t make it up a mountain of moderate difficulty. Walking over the years got worse after the hypotension began. He is losing cognitive function, and has great sensitivity to light/Sun and tilting his head can bring on dizziness. He has had one small stroke which was embolic, and both carotid arteries have been stented, since. He has a small infrarenal aortic aneurysm that on measurements is stable for now. His baroreceptors have been damaged from neck radiation. He went to a neurologist for many years that did sleep studies, and my husband has since been using a CPAP at night for sleep apnea/oxygen.
I guess my question is due to being frustrated. Since the treatments, his hemoglobin is slightly below the normal range or at the low end of normal, so his doctor won’t write an order for infusions. Honestly, I don’t know what is really wrong, but I suspect his chronic small vessel disease in his brain has progressed and that obviously he has at the very least, autonomic failure, and possibly is progressing into Parkinson’s or MSA. I am questioning if the treatments have ultimately caused this. But I would appreciate any thoughts or ideas from this forum. I don’t know if he should be going back to a neurologist, or someone who might diagnose and treat him if possible. An autonomic specialist, perhaps? He’s unique because of his treatment history. I am getting so frustrated as his caregiver for 10 years because I am sick of going to doctors with him. I had a doctor kick me out of his office a few weeks ago because my frustration surfaced, which took the attention away from my husband. But Kenny (my husband) can’t remember or isn’t good at remembering his history or issues to self-advocate. That’s when I called Mayo Clinic.
other symptoms: he doesn't sweat, is heat intolerant, and has lost a great deal of muscle mass over time. The hypoperfusion is ocurring often with almost every time he stands. How long can his body take this?!!
Where do I go from here? They nearly killed him to cure him from cancer. But they didn’t tell us about the long term results of putting him in remission. I live in daily fear of him falling and hitting his head, or of him having a stroke suddenly. And of a dementia diagnosis. It’s probably vascular dementia or was. I’m just not a doctor and I can’t figure it out though I read the research. We would have to wait a year for an appointment at Mayo Clinic in Jacksonville, FL. What to do, what to do??? And, what should I do to survive this?
help please - is this end stage MSA?
Has anyone tried Sertraline to help with MSA ?
MSA - never heard of it before
recent hospitalization
