Atrophy of the neck area
I've tried researching the connection between head and next cancer, atrophy of the tissues and mussels in the neck due to radiation therapy and the existence of low blood pressure and am not finding much. My Doctor is really scratching her head as well, she can relate my low blood pressure to Orthostatic Hypotension, but none of the medications seem to be able to bring it under control, so I'm thinking that is a radiation complication issue over the last 21 years and that they need to be looking in that area. Just wanted to see if anyone else has experienced this type of issue and where did they go to have it diagnosed and treated. I'm mobile, so traveling some where is doable for me.
RJC-still-vertical (Ron)
Comments
-
If you google baroreceptor damage and radiation
things pop up that relate to your issues. Here's a direct link to one of the articles, or at least the abstract:
http://journals.lww.com/theneurologist/Abstract/2009/03000/Radiation_Induced_Cranial_Neuropathies_Manifesting.9.aspx
I've glanced at a couple of these and I think you'll find your situation is likely related.
Pat0 -
Thankslongtermsurvivor said:If you google baroreceptor damage and radiation
things pop up that relate to your issues. Here's a direct link to one of the articles, or at least the abstract:
http://journals.lww.com/theneurologist/Abstract/2009/03000/Radiation_Induced_Cranial_Neuropathies_Manifesting.9.aspx
I've glanced at a couple of these and I think you'll find your situation is likely related.
Pat
Pat, thanks, I've been researching the internet, but guess I'm not asking the right questions. I'll try the baroreceptor damage and radiation search index.0 -
Issues
I was treated in 1996 and apx 2 1/2 years ago started having side effects which included loss of my abilitry to swallow and the need for a Gtube, loss of voice, severe swings in blood pressure from extremely high to faintingly low and several others (numbness, back pains, neck spasams). My Dr at UAB in Birmingham told me that all of these problems are directly related to the radiation damage (I've had pneumonia four times in the past 12 months due to aspiration)and that now all he can do is "treat the symptoms". I recently changed my diet from 100% Ensure to blending regular food and pushing it through the tube and it has helped my BP significantly. I still get periodic eposodes of light-headedness if I stand too fast but they are much less frequent than before. I use a lot of fruit juice in the blender along with whatever else I want to throw in there - probably tastes like crap but I don't care since I don't eat it.
Sorry I don't have a resolution but thanks for the info on the carotid artery, something I probably should watch out for.0 -
WelcomeRJC-still-vertical said:Thanks
Pat, thanks, I've been researching the internet, but guess I'm not asking the right questions. I'll try the baroreceptor damage and radiation search index.
Been thinking about your situation. More of a conundrum is what healthcare provider do you see to evaluate and treat this? I admit I don't know the answer to this. If your current doctor isn't conversant with the topic, that is worrisome, but not necessarily fatal. You might see what a thorough literature search around those parameters turns up, share with your doctor and see what kind of response you get. Or if you are plugged into good oncology follow-up, you could request a referral.
Or if you find someone in your literature search who's expert you might refer yourself there. Just thinking out loud, not much help. Sorry. It just seems to me someone else has posted about orthostatic problems on this board in the last few months. Maybe someone else will post to this thread and suggest how they've dealt with this.
Pat0 -
Thankslongtermsurvivor said:Welcome
Been thinking about your situation. More of a conundrum is what healthcare provider do you see to evaluate and treat this? I admit I don't know the answer to this. If your current doctor isn't conversant with the topic, that is worrisome, but not necessarily fatal. You might see what a thorough literature search around those parameters turns up, share with your doctor and see what kind of response you get. Or if you are plugged into good oncology follow-up, you could request a referral.
Or if you find someone in your literature search who's expert you might refer yourself there. Just thinking out loud, not much help. Sorry. It just seems to me someone else has posted about orthostatic problems on this board in the last few months. Maybe someone else will post to this thread and suggest how they've dealt with this.
Pat
Thanks Pat, if we ever find out what it is I'll let everyone know. I have done a bunch of research and I think I'm getting closer. I see my Doctor tomorrow again and I'm bringing some of that research with me. Hopefully it may trigger something, if nothing else maybe a recommendation to a specialist that can find out what my problem is and how to treat it.
Ron0 -
ThanksGreend said:Issues
I was treated in 1996 and apx 2 1/2 years ago started having side effects which included loss of my abilitry to swallow and the need for a Gtube, loss of voice, severe swings in blood pressure from extremely high to faintingly low and several others (numbness, back pains, neck spasams). My Dr at UAB in Birmingham told me that all of these problems are directly related to the radiation damage (I've had pneumonia four times in the past 12 months due to aspiration)and that now all he can do is "treat the symptoms". I recently changed my diet from 100% Ensure to blending regular food and pushing it through the tube and it has helped my BP significantly. I still get periodic eposodes of light-headedness if I stand too fast but they are much less frequent than before. I use a lot of fruit juice in the blender along with whatever else I want to throw in there - probably tastes like crap but I don't care since I don't eat it.
Sorry I don't have a resolution but thanks for the info on the carotid artery, something I probably should watch out for.
Greend, Thanks for the info and support. I haven't started blending yet, however that is going on my schedule. I'm sticking with the formula for right now since I'm new to the GTube. Once my Doctor and wife get to feeling better about my health again, I'll start experimenting and see what I can do to get my nutrition in a more natural substance. Besides that, its expensive buying formula and even Ensure versus buying regular food and blending it with other fluids to push down the GTube.
Ron0 -
BlendingRJC-still-vertical said:Thanks
Greend, Thanks for the info and support. I haven't started blending yet, however that is going on my schedule. I'm sticking with the formula for right now since I'm new to the GTube. Once my Doctor and wife get to feeling better about my health again, I'll start experimenting and see what I can do to get my nutrition in a more natural substance. Besides that, its expensive buying formula and even Ensure versus buying regular food and blending it with other fluids to push down the GTube.
Ron
Don't make the mistake I did of waiting too long. For a year and a half I used Ensure (or Walgreens generic mix) and while I kept weight pretty standard I was weak and light-headed all the time; just wanted to sleep and had no energy. The reason I didn't blend was I thought it would be too much trouble but after pneumonia #3 Dr insisted. Well it wasn't too much trouble, the time to eat was a LOT shorter and I couldnt believe the change in my strength and attitude. I use a lot of fruits and avacados plus some meats. Bacon and fatty meats will plug up your tube so I don't use them. Sausage, lean ham etc does very well (just down in Mexico and I blended the hell out of carne asada)I normally use juice or milk to add fluids to the blend. Sometimes we make a big batch of junk - the mix is not something I would normally eat through my mouth bacause I think it woud taste terrible- blend it all up and then freeze the bags. Each day I take ouit a few for the next day and life is simple again. Big plus. after a year and a half I was tickled to death to finally start having normal BM's not those Ensure....you probably know what I mean - amazing how the small things in life are so significant now.0 -
Ron
To follow up on Denny's post on making your own tube food, there is stuff on the Superthread, that you may find useful.
HNC SUPERTHREAD
Specifically:
NUTRITION / HEALTHY EATING / LIQUID NUTRITION TIPS:
TRACKING CALORIES AND NUTRIENTS WITH MY PYRAMID TRACKER
CONTAINS ADVENTURE BOB's TUBE FOOD RECIPE
LUCY's REAL FOOD. How to make real food for tube feeding instead of using canned
BEST WEIGHT GAINING DRINKS
These are good tips and recipes if you can only manage liquids.
THE 30 HEALTHIEST FOODS
HEALTH BENEFITS OF VEGETABLE JUICE
JUICER RECIPES
JUICER REVIEWS
DR OZ GREEN SMOOTHIE
SMOOTHIES
WHAT SHOULD YOU EAT? A BETTER FOOD PYRAMID
VITAMIX Emulsifier Blender. It is my understanding they will give a discount for cancer patients.
HEALTHMASTER EMULSIFIER0 -
@Greend, Thanks, I wouldGreend said:Blending
Don't make the mistake I did of waiting too long. For a year and a half I used Ensure (or Walgreens generic mix) and while I kept weight pretty standard I was weak and light-headed all the time; just wanted to sleep and had no energy. The reason I didn't blend was I thought it would be too much trouble but after pneumonia #3 Dr insisted. Well it wasn't too much trouble, the time to eat was a LOT shorter and I couldnt believe the change in my strength and attitude. I use a lot of fruits and avacados plus some meats. Bacon and fatty meats will plug up your tube so I don't use them. Sausage, lean ham etc does very well (just down in Mexico and I blended the hell out of carne asada)I normally use juice or milk to add fluids to the blend. Sometimes we make a big batch of junk - the mix is not something I would normally eat through my mouth bacause I think it woud taste terrible- blend it all up and then freeze the bags. Each day I take ouit a few for the next day and life is simple again. Big plus. after a year and a half I was tickled to death to finally start having normal BM's not those Ensure....you probably know what I mean - amazing how the small things in life are so significant now.
@Greend, Thanks, I would start now with Blenderized food, however as you know we are not the only one going through these changes and right now just being eight weeks into this tube feeding I don't need the hassle of discussing the pros and cons with the other person going through this with me. I'm slowly working on her, but she really has faith in what the doctor says and since I had such a hard time while in the hospital (we were planning where to have the services) she is really apprehensive about me doing something that may land me back in the hospital again. Just going bolus from the pump was a huge bump in the road for her so going to blenderized nutrition is going to have to come gradually. I'm starting to print off web research that says how much better blenderized food is than that of manufactured nutrition and leaving it around so she will read it, so maybe in another week or so she will come around some more.
Working all angles!
Ron0 -
@sweetblood22,sweetblood22 said:Ron
To follow up on Denny's post on making your own tube food, there is stuff on the Superthread, that you may find useful.
HNC SUPERTHREAD
Specifically:
NUTRITION / HEALTHY EATING / LIQUID NUTRITION TIPS:
TRACKING CALORIES AND NUTRIENTS WITH MY PYRAMID TRACKER
CONTAINS ADVENTURE BOB's TUBE FOOD RECIPE
LUCY's REAL FOOD. How to make real food for tube feeding instead of using canned
BEST WEIGHT GAINING DRINKS
These are good tips and recipes if you can only manage liquids.
THE 30 HEALTHIEST FOODS
HEALTH BENEFITS OF VEGETABLE JUICE
JUICER RECIPES
JUICER REVIEWS
DR OZ GREEN SMOOTHIE
SMOOTHIES
WHAT SHOULD YOU EAT? A BETTER FOOD PYRAMID
VITAMIX Emulsifier Blender. It is my understanding they will give a discount for cancer patients.
HEALTHMASTER EMULSIFIER
Thanks for
@sweetblood22,
Thanks for the push towards the HNC Superthread. I wonder why this isn't the first thing to be reviewed when we first join. It looks like a good place to get a bunch of information. Thanks
Ron0 -
Low blood pressurelongtermsurvivor said:Welcome
Been thinking about your situation. More of a conundrum is what healthcare provider do you see to evaluate and treat this? I admit I don't know the answer to this. If your current doctor isn't conversant with the topic, that is worrisome, but not necessarily fatal. You might see what a thorough literature search around those parameters turns up, share with your doctor and see what kind of response you get. Or if you are plugged into good oncology follow-up, you could request a referral.
Or if you find someone in your literature search who's expert you might refer yourself there. Just thinking out loud, not much help. Sorry. It just seems to me someone else has posted about orthostatic problems on this board in the last few months. Maybe someone else will post to this thread and suggest how they've dealt with this.
Pat
Pat,
If my memory is correct, I think it was Hondo that was having issues with his blood pressure dropping and going back up, and then suddenly dropping again. I forget what he did to solve the problem.0 -
SuperThread StickyRJC-still-vertical said:@sweetblood22,
Thanks for
@sweetblood22,
Thanks for the push towards the HNC Superthread. I wonder why this isn't the first thing to be reviewed when we first join. It looks like a good place to get a bunch of information. Thanks
Ron
Hi Ron, we've asked a few times, seems the forum mod doesn't have the capability to make threads like the SuperThread a sticky (where it's always at the top)...
So Dawn (Sweetblood), updates it about every week or so.. Only she posts to it, that way there isn't any other clutter, and it'll go to the top when she bumps it.
Best,
John0 -
RonRJC-still-vertical said:@Greend, Thanks, I would
@Greend, Thanks, I would start now with Blenderized food, however as you know we are not the only one going through these changes and right now just being eight weeks into this tube feeding I don't need the hassle of discussing the pros and cons with the other person going through this with me. I'm slowly working on her, but she really has faith in what the doctor says and since I had such a hard time while in the hospital (we were planning where to have the services) she is really apprehensive about me doing something that may land me back in the hospital again. Just going bolus from the pump was a huge bump in the road for her so going to blenderized nutrition is going to have to come gradually. I'm starting to print off web research that says how much better blenderized food is than that of manufactured nutrition and leaving it around so she will read it, so maybe in another week or so she will come around some more.
Working all angles!
Ron
With all due respect to your other half, this is your body and your health we are talking about here. Don't really understand why she would not be on board with you eating healthy and nutritious real food, vs. something from a can that while has nutrients, is sorely lacking in fibre, minerals, and the many benefits of actual fresh and real food. Having said that, I did use the canned for a long time, which I suplimented a bit with baby food, and yogurt, at the time, through my tube. But I didn't know about this site back then, and I was about on my death bed for a long time, with no caretaker to help me with feeds and meds. I was on my own for all that. I was down to 87 pounds, and very week. I was getting in 2400 cals a day of canned stuff and my additions. I didn't start to gain weight or feel significantly better until I started to eat real food. I really believe a high speed emulsifier or blender and a mini chopper should be a staple for all HNC patients. The importance of fresh fruits and veg, and getting proper nutrition can not be overstated.
As far as the Superthread goes I am thankful for those that help me give out the link to the newbies, and as John said, I try to always keep it on the first page. There is also a copy in my blog in my expressions pages or My CSN Space.0 -
By gollyMarineE5 said:Low blood pressure
Pat,
If my memory is correct, I think it was Hondo that was having issues with his blood pressure dropping and going back up, and then suddenly dropping again. I forget what he did to solve the problem.
I think you're right. My memory is going.0 -
@Sweetblood22 -We'll getsweetblood22 said:Ron
With all due respect to your other half, this is your body and your health we are talking about here. Don't really understand why she would not be on board with you eating healthy and nutritious real food, vs. something from a can that while has nutrients, is sorely lacking in fibre, minerals, and the many benefits of actual fresh and real food. Having said that, I did use the canned for a long time, which I suplimented a bit with baby food, and yogurt, at the time, through my tube. But I didn't know about this site back then, and I was about on my death bed for a long time, with no caretaker to help me with feeds and meds. I was on my own for all that. I was down to 87 pounds, and very week. I was getting in 2400 cals a day of canned stuff and my additions. I didn't start to gain weight or feel significantly better until I started to eat real food. I really believe a high speed emulsifier or blender and a mini chopper should be a staple for all HNC patients. The importance of fresh fruits and veg, and getting proper nutrition can not be overstated.
As far as the Superthread goes I am thankful for those that help me give out the link to the newbies, and as John said, I try to always keep it on the first page. There is also a copy in my blog in my expressions pages or My CSN Space.
@Sweetblood22 -We'll get there, eight weeks since having the GTube installed, we still need to feel our way around some, explore the alternatives, look at the advantages and disadvantages. We have been married now going on 35 years and been dealing with cancer and its complications for 21, its worked so far and a little concern from my wife about new approaches isn't much to have to worry about. I understand her apprehensiveness since we can't have any backing up the esophagus because of the aspiration issues and making sure everything stays in the stomach where it belongs is our main concern. Things will change and as the old vaudeville act goes "Slowly I turn, step by step, inch by inch" we will get there.
Good to have your input and experience on blending I know will come in handy as I continue to shift towards that approach.
Thanks Sweetblood22
Ron0 -
@RonRJC-still-vertical said:@Sweetblood22 -We'll get
@Sweetblood22 -We'll get there, eight weeks since having the GTube installed, we still need to feel our way around some, explore the alternatives, look at the advantages and disadvantages. We have been married now going on 35 years and been dealing with cancer and its complications for 21, its worked so far and a little concern from my wife about new approaches isn't much to have to worry about. I understand her apprehensiveness since we can't have any backing up the esophagus because of the aspiration issues and making sure everything stays in the stomach where it belongs is our main concern. Things will change and as the old vaudeville act goes "Slowly I turn, step by step, inch by inch" we will get there.
Good to have your input and experience on blending I know will come in handy as I continue to shift towards that approach.
Thanks Sweetblood22
Ron
Gotcha, and apologies if I sounded cranky or out of turn up there. I have a tendency to be quite direct, and that can really irritate people.
0
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