Hello @jimhd .

I see you sent me 2 post. I wish I had seen it before I sent the other one.

I am glad that the doctors have finally linked some of your issues to neuropathy system.
What are they or can they do for those problems, besides pain medication?

Well, I am glad you have learned how to get some kinds of food down.to your stomach.

I had to learn all different kinds of methods to do the same thing until 2014 when I lost all swallowing capabilities.
As I said before, I finally accepted the fact that I wasn't going to get enough nourishment eating orally and had my first feeding tube.
I only used it part time. I have been struggling for years losing capabilities of oral eating. I had to keep deleting items that I love.
But when you're as active as I was all those years and needed the energy I had to do something. So I was doing both feeding tube and oral eating. That twas giving me the energy I needed.
The nutritionist has me on a very high cal formula. So what I was still lacking in calorie input by oral eating, I was getting it from tube feedings.

So perhaps I was getting use to tube feedings so when the time came and I could no longer eat orally I had no issues with it all.
Sure you have to give up all the foods you like to eat because of the taste, but that's all in your mind.

But ,if you haven't been told this by your speech pathologist, I am going to tell you right now.
You are playing Russian roulette every time you eat right now and taken the chance of a fatal aspiration event.
I was told this for many years by my speech pathologist, but she always said I knew how to deal with it.
But she always warn me that there will be a time when you will not be able to stop an aspiration event and it will kill you.
So when it got to the point when I could even get my milk soaked rice krispies or my soft poached eggs down I knew it was time to quit playing the Russian roulette game and go full time on the feeding tube.
People make a bigger issue out of using a feeding tube then what is necessary.

So my advice for anyone in this situation to get a feeding tube now and get use to it .
I have had one for almost 10 years now and it has become a part of me and it 's no big deal.
And full time on it since 2014.
Yes there can be some inconveniences at the beginning with scheduling the feedings but eventually one figures it all out.
I like doing my overnight feeding using a feeding pump, then I only have to do one during the daytime.
Using the pump allows you to adjust the flow rate to your needs, verse the gravity feeding.
When you wake up your all set to go.
Also using the pump at a slower rate verse the gravity feeding, allows you to maintain weight better.

I am still physically active and until I had these hearing issues I was square dancing and round dancing 4 or 5 nights a week.
I was traveling to different Dance conventions all over the U.S. Traveling by plane or land.
Now I am just traveling around the country to different doctors.
But when I getting my hearing back, next year I plan on going to different dance conventions again.

Well I could go on about this topic, but it 's time for my medications and I'm getting very tired.

Take care Jim.
Hope to hear from you soon.

GOD BLESS,

Tim

Tim @squaredancer - Thanks for your input.

I spoke with the neurologist this week, and I don't really know understand exactly everything I heard. He spoke of two kinds of neuropathy. The biopsy of my leg shows small fiber neuropathy. He also said there's some deterioration of the myelin, which is a sheath around the axon of some nerve cells, insulating it. It's essential for the functioning of the nervous system. I'm not sure if that was found in my hands or my head. He did a nerve conduction study of my hands and a test to determine how well messages get from my auditory nerve to my brain. It was normal to the brain, but decreased to the brain stem. I don't know what that means.

The next step is to see a neuro specialist at OHSU (Oregon Health Science University) in Portland. I have episodes of dizziness - vertigo - and coinciding with the dizziness is a loud buzzing behind my eyes that sounds like thousands of crickets. I hope to find out what that's about, and also more about the connection between neuropathy and my swallowing problems.

My middle sister died a few years ago, and after seeing every doctor at Stanford, never had a diagnosis of what was causing all of her problems. One of the first presenting symptoms was problems with swallowing. So, it probably causes more concern for me, having watched my sister slowly die. I don't know if she ever used a pump, but she did have a feeding tube her last year or so.

Do you have a specific diagnosis as to what caused your loss of ability to swallow? I haven't heard any mention of a cause for my dysmotility. Knowing why it started would help me live with it better, I think. That's one of my idiosyncrasies. I want to know all I can about things, so I like Google. I can look everything up anytime I want to. My wife thinks I'm too obsessive. She connects my curiosity with worrying, which is sometimes true, but not always. If something is wrong, I want to know why and what it is and what the outcome might be and what treatments are required and on and on.

I don't think a feeding tube is in my near future. At this point, swallowing issues are just a nuisance. I'm careful with liquids, and I just take my time chewing and swallowing.

I have to stop and head for bed. I hope your hearing problems are resolved soon. I hope never to lose my hearing. I'm a pianist, and music has been my life. I was reminded of something when you wrote about dancing. I went to college in Springfield, Missouri, and sometimes on Saturday nights we'd drive to the little town of Ozark. In a vacant building on the town square, there was always square dancing, with a fiddle, a bass and a guitar. That was a long time ago, in the early 70s, so memory is a little sketchy. There might have been more musicians, but there always was a crowd. I have never learned to dance, so I just enjoyed it at a distance.

We can talk more another day.

Jim

Jim, when my father was having problems swallowing he was referred to a speech therapist. It helped tremendously. Have you been to speech therapy for your problem? Also, I'm curious if you wear dentures. My dad's never seemed to fit properly as he was in his 80's and 90's. He died at 93. I have always wondered if that was part of his swallowing issues. He did get his dentures refitted often, but it never seemed to help.

I certainly hope you find the root cause of these problems as you've had many physical problems to deal with. I too am a researcher on my physical and mental health issues as well as all the medications I have been prescribed. My husband thinks I worry too much as well. I am just different from him I think. He ignores his health problems until they become major and finally he goes to the doctor. The doctor tells him the same things I have been telling or recommending for months. He takes action when the doc tells him, but not when I do. Actually I've been changing to telling him to see the doc when he's got something going on since he listens to them. Often I feel like he won't take action BECAUSE I said it's something he needs to pay attention to. Lately he's been better about this I think his doc has confirmed my "diagnoses" so often. Anyway, I do enjoy learning about many things on Google, being careful to go to reputable sites for information.

By the way, I have begun tapering off my blood pressure medication due to having so many dizzy spells and balance problems. My BP has often been 100/60, sometimes even lower! So, my PCP decided to cut my medicine by half. Then because I was still having low BP and dizzy spells, I cut it in half again. At my endocrinologist appointment last week my BP was 115/74, so he said to keep weaning off and see how things go. Since I'm retired now, I am under much less stress, and I lost 85 pounds 3.5 yrs ago, so I think those things have allowed me to experience a normal BP, even with T2 diabetes. I am taking a pill every other day now and next week will stop altogether.

In addition, I am tapering off my Tramadol 50mg that I was taking 4 times every 24 hrs for nearly a year for pain. This is my last pain medication and I'm so happy to be getting off it. I am down to 2 per 24 hrs now, and will stop completely in about a week. I no longer have the pain in my right sciatic nerve, hip, thigh, calf, and foot that i have had for 1.5 yrs. I have been doing ART, and it has totally worked! I am so relieved to be able to walk and go up and down steps without excruciating pain. I have a ton of energy now and I am beginning to do many of my former activities which is a joy for me. Good news that I can actually get better rather than continue to deteriorate in health. I am being careful not to overdo it as I don't want to reinjure myself. Best of luck to you Jim.

Thanks, Gail B

@gailb

It sounds like you are doing much better - congratulations on your progress!

Is there any one thing that you could share that might have contributed to your improvement?

Teresa

Yes, actually 2 things. First, I was not willing to concede to a continuous downhill level of health. There are many things I still want to do that require robust health.

Second, going to get ART therapy when PT didn't work. I read about Active Release Technique on Connect, and decided to try it. I was amazed what releasing the muscles and nerves did for my pain right away. I continued for monthly sessions once a month for 3 months after the initial 6 sessions. I highly recommend it. Thanks for asking.
Gail B

@gailb

I'm glad to hear that your attitude and ART therapy was so helpful!

Teresa

Hi, Gail @gailb - I've been working with a speech therapist for a couple of months, and I think the exercises she's given me have helped. I don't have dentures, still original equipment. When I was 50, I had braces at the same time as our young daughter, and I wear a retainer every Saturday night.

Jim

Great to hear you're seeing a speech therapist. Also great that you still have your own teeth. I was wondering if dentures might have an effect on swallowing, but apparently not. Best of luck Jim.

Hello Jim @jimhd

I haven't been able to get back in to the system since I sent the last one until tonight.
But I see you have had enough people respond to you message.

Something that I missed telling you about using the pump, which I use for my overnight feeding.
This newer pump has 2 bags attached to it.
One is for water and the other bag is for whatever formula food you are on.
I do 4 cans of food on the overnight.
Each can is 475 calories and is 8 fluid ounces, or 237 ml and is called Two Cal-HN
The water bag I usually fill up to about 700 ml of water.
The water is needed to keep you hydrated and also to help digest the formula, it's called flushes. You set the pump up to the rate of formula you want per hour, such as 240 ml and at the end of each hour the pump will switch to give you water ever amount of water you per hour such as 120 ml per hour. Once you set it up you don't ever have to chance. All you have to do is prime the pump ever time you use it and the rest is all automatic according to your setting. What water is left over in the morning i just continue to do flushes.
Again I like the overnight feeding as it stays with me longer and I maintain weight better.
Also it gives me more free time during the day.

Now the gravity feed that I use during the day time is strictly one bag filled with the formula.
You can set the drip rate to what you want but it manual control.
Flushes still need to be done.
But the flushes are done at the end by using a syringe and pumping at least 120 to 180 ml of water into the feeding tube.
Then throughout the day you should flushes with water to keep you hydrated.

But I have also put liquids down like home smoothie, which are not real thick, coffee, not real hot coffee, or juices.

Thought you might like to know more information it.
You don't want to put anything down down that is really thick and plug it up.

And I disagree with you about when you may need to make the decision on needing a tube, or perhaps should I say when you will be ready for it.
But time will tell.
I went through this same things you are were you have to eat real slow chew everything, and etc.That time will begin getting longer and longer. Food gets cold or spoiled. Everyone else is done eating 30 to 45 minutes sooner then you have.
Takes 1 hour or more to eat a meal. people start complaining about it.
Your not getting enough nourishment
Start losing weight.
And the list goes on.and on.
You simply can do this at each meal 3 times a day and spending minimum of 4 to 6 hours just eating.

What has caused my swallowing issues or should I say sudden on come of the voluntary tongue and throat muscle from responding ?
You might say that swallowing have been an on going issue since after the first radiation therapy back in 1973 after my first parotid gland cancer journey on the right side. Through the years I was having to give up certain kinds of food that I just couldn't get down.
I love pizza and back in the 90's the meat lovers special became really popular and I just loved it.
But by late 90's I had to give up pizza.
Then it started to be beef, like steaks and etc. in 2000's
By then weight issues started coming in and in 2009 I agreed to the feeding tube, but I only used it part time.
Chicken wasn't an issue until after my 2nd journey with my 2nd the left side parotid gland cancer journey, which was actually my 3rd journey cancer in 2012. I had basil cell cancer on my nose in 2002/2003, which was the 2nd journey with cancer. It took 2 surgeries before they had cleared the margins and didn't need any treatments.
But this left side parotid gland cancer also required radiation therapy.
So the above gives you a very general ideal of what I mean over the years. It was a slow but steady decline where I had to give up certain foods.

But then at the beginning of 2014 I notice now I am getting down to just sea foods, eggs soups and etc.
Then all of a sudden in July 2014 i could get anything down not even liquids.
My voluntary throat and tongue muscles would move.
Mind you I have been having a number of EGD/Dilatation procedures done every year for a restrictor that was just below the airway.
That was the first thing everyone wanted to put the blame on.
Of course the GI denied that was the cause.
The ENT had no clue and really was concerned about finding out why.
Finally my radiation oncologist stepped up to the plate and took control of finding out what happened cause she knew the doctors were going to blame her for it.
She got me into a neurologist and he immediately had me set up with all kinds of nerve testing, which all came back negative.
He finally said it has to be from the radiation but not from 2012 but from back in 1973.
It get renewed energy from t he radiation of 2012 and was it destruction path again.
But my radiation oncologist didn't believe that we started reaching out to like Mayo Clinic and they rejected us.
And tried another neurologist at University of Michigan hospital. He said same thing radiation from 1973.
And tried several other ideas and all failed.
o here we are over 3 years later and still have no idea why so there is no diagnosis for this at this time
Perhaps this osteomyelitis problem is the cause as it has some of the same symptoms.
Once this heals wouldn't it be great if some of these other issues cleared up?

Well, I am or was an research engineering in my career 30 + year at Ford.
So I guess it's my nature to want to research things and get an understanding of what the doctors are talking about when I see them.
I call it proactive. Doctors my not like it but that's there problem/
But like you,it is also being of curious nature and also little bit of worrying goes on.for me too.
It's not being obsessive.

Springfield, MO today is one of the biggest areas where square Dancing is still alive today.
It's great that you are into music and piano. That's good therapy in itself.
Just like my square dance and round dancing is to me.
It's both mental and physical benefits.

TO bad about your sister and never getting closure on what cause her to pass on.

Well, this is a lot longer then I intended it to be

Take care.

GOD BLESS,

Tim @squaredancer

Thanks for your response, Tim @squaredancer - a lot to think about. I haven't had cancer, thus no cancer treatments that can cause swallowing problems. At this point, I don't have any limit on what I eat. The speech therapist has voiced the concern that I'm in the lower half of normal bmi. I would have to lose more than 20 pounds to be underweight, and I still have to pay attention to what I eat, so I don't get back up to where I was a couple of years ago. I enjoy most food, with a few exceptions - bologna and mayo on white bread, canned baked beans, alcohol, brussel sprouts, velveeta, American cheese and macaroni salad with too much mayo.

Marilyn prepares meals that are well balanced, and most of the time meat is in a sauce or casserole, making it easier to swallow. I'll just have to enjoy food as long as I can. I really hope not to go down the same road my sister did.

I hope, though, that if I find myself in your position, I'll be able to face it with equanimity as you seem to. The same God gives both of us strength for the day.

Jim