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?
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Jillian100
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Hello JillianI'm so sorry the predicament you find yourself in. Finding a diagnosis can be so difficult even without the other issues your husband has. Your profile doesn't say where you live but I suspect USA as you talk about the Mayo clinic. Here in the UK things are so different as I would immediately say you should consult a neurologist. I realise it's not so easy for you.
In the UK we have a wonderful organisation called the MSA Trust who are so supportive of those living with or concerned about if they have MSA. In the US there's the MSA Coalition who may be able to help. Both organisations have a host of information on their web sites.
I wish you every scrap of luck in your search for some answers.
Hello Jillian, What was the neurologist's assessment of your husband's symptoms. Was he examined for Parkinsonism? Would a DatScan help sort this out? If you do live in the US, I would suggest asking his Primary Care doctor to make a referral to a Movement Disorder Specialist in your area. Most major cities have these specialists. Hopefully you would be able to get an appt. sooner than one year. Ruffner
I am my husbands carer. He has been diagnosed with MSA. He has many of the same symptoms as your husband and also uses a CPAP machine at night.
I know you say you're not a doctor but you have 24hour a day experience of caring for your husband and that makes you more of an expert in his version of these symptoms than any health professional.
I think from what I've seen on this forum that an MRI scan of the brain can help to identify different types of neurological conditions. Sorry I don't know how you go about getting an MRI scan in the US.
Hi from Jillian aka Jill, here from near Tampa. I really appreciate the replies and guidance. I am researching Tampa General Hospital today for neurologists…I agree that he needs new scans. We had a neurologist in Fairfax, VA who also taught at Georgetown University. We had lots of sleep studies over time. To my knowledge, Ken was not part of a study. He started him on a CPAP.
We relocated in 2019 and bought 2 homes so when the pandemic began, we were separated and Ken had to start all over with doctors. He’s been trying to improve swallowing and manage hemoglobin levels which, meanwhile, his OH has progressed and the neck issues are as well.
So, I’ve just kept trying to put the pieces together for him and you’ve only confirmed the immediate need for a new neurologist for scans.
I thank you so deeply felt for each of your responses (life lines, support). Now I’m reaching out and don’t feel so alone. It’s the healthy thing to do, right.
The reason I say this is because my father had levy body dementia and my mother had Alzheimer’s. I’m really concerned about managing my own brain health and physical health over time with Ken’s condition. What concerns me is that I’ve passed 10 years to date with his battle after cancer (testing, doctors, trying to figure out what is wrong after treatments), that I could be in store for another long period of caregiving. Part of me wants to run and the other part tries to be brave. I don’t want to have his health cause my own demise.
But the main focus is always him - so off to find a new neurologist. I am taking a therapeutic break and going to Australia for two months. His sister will care for him. I’ll come back and resume care…it’s a survival thing.
Update: We have a new neurologist and new appointment scheduled for September 29 at Tampa General/University of Southern Florida (USF). On Ian’s suggestion, I went to the MSA Coalition site and did a physician search of neurologists in Tampa, 30 miles away from us. Many matched with the Tampa General Hospital website. We called and they did an intake which matched him by symptoms to his new specialist. I’m so grateful for this website in UK!
So , life, waiting, and a rest for some weeks, and then we’ll see. I will update once we have some results. Most probably in October. I send a hug and a prayer for each of you that replied.
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Pure Autonomic Failure 
Needing opinions or facts with MSA-C
Advanced MSA / Towards the end
First time posting on this site.
