Re: Weight Gain/ Get the posts rolling

[Guest guest]

Well, yes, in response to Weight Gain...... post decompression, weight gain, the

battle of the bulge is an issue. Post decompression I was diagnosed with B12

deficiency and Vitamin D insufficiency. BOTH are corrected, but also a dx of

Fibromyalgia, and recently Trigeminal Neuralgia has reared it's ugly head.

Living in Michigan and winter cold, aggravates tight and stiff muscles. I too,

have movement difficulties and haven't found the treadmill/bike to help, but

instead to irritate. Maybe I don't stick with it long enough. It's very hard to

get motivated to do the exercise. I also have horrible fatigue.

*~*bonnieblue06*~*

Subject: Weight Gain/ Get the posts rolling

To: " CCI " <chiariconnectioninternational >

Date: Monday, February 13, 2012, 11:47 AM

 

Hello all...lets get some posts rolling!!! I will start things out by

asking how many are/have experienced quite a bit of weight gain and what did you

do. I have gained quite a few pounds partly due to the fact that exercise is

very difficult for me to do. I am so limited in function that when I ride my

exercise bike, my legs hurt so bad that I cannot even get off the darn thing.

......anyway would exercises could I do or what else could I do?

Thanks,

Please post it to the entire group so everyone can see the answers.

[Guest guest]

I am so in the same boat.  Thanks so much for " getting it rolling " .  I'm

really excited to see some ideas.  I'll try and put on " my thinking cap " so I

can contribute but for now, I'm a dud.  Sorry.

Carol in Las Vegas

To: CCI <chiariconnectioninternational >

Sent: Monday, February 13, 2012 8:47 AM

Subject: Weight Gain/ Get the posts rolling

 

Hello all...lets get some posts rolling!!! I will start things out by asking how

many are/have experienced quite a bit of weight gain and what did you do. I have

gained quite a few pounds partly due to the fact that exercise is very difficult

for me to do. I am so limited in function that when I ride my exercise bike, my

legs hurt so bad that I cannot even get off the darn thing. ......anyway would

exercises could I do or what else could I do?

Thanks,

Please post it to the entire group so everyone can see the answers.

[Guest guest]

Ok! This is something I wanting to get started on a larger scale! I would love

it the NS doing the decompressions to do a hormone, vitamin level check before

the surgeries! I do believe their is something that happens to the way our body

absorbs vitamins or the hormonal level changes and fast forward our bodies into

a much older state! I'm only 36 and my body was acting like a 60 yr old.

Currently I'm using Body Logic, MD and love it! I was able to move my shunt. A

k to the original setting when i was put in and I have enough energy to keep up

with my two year old if we take midday naps together! Lol

I would love to see work done on this and after my United walk on June 15, i

think the Lord want me to focus on this very topic!

In the mean time, i will find out from my doctor was the exact test are and i'll

be able to formulate a better approach to ask Dr. Kula at TCI.

Go, CSF!

Let's keep our brains thinking!

Bea

Sent from my iPhone

On Feb 13, 2012, at 12:01 PM, Bonnie Nethercott

wrote:

> Well, yes, in response to Weight Gain...... post decompression, weight gain,

the battle of the bulge is an issue. Post decompression I was diagnosed with B12

deficiency and Vitamin D insufficiency. BOTH are corrected, but also a dx of

Fibromyalgia, and recently Trigeminal Neuralgia has reared it's ugly head.

Living in Michigan and winter cold, aggravates tight and stiff muscles. I too,

have movement difficulties and haven't found the treadmill/bike to help, but

instead to irritate. Maybe I don't stick with it long enough. It's very hard to

get motivated to do the exercise. I also have horrible fatigue.

>

> *~*bonnieblue06*~*

>

>

>

>

> Subject: Weight Gain/ Get the posts rolling

> To: " CCI " <chiariconnectioninternational >

> Date: Monday, February 13, 2012, 11:47 AM

>

>

>

> Hello all...lets get some posts rolling!!! I will start things out by asking

how many are/have experienced quite a bit of weight gain and what did you do. I

have gained quite a few pounds partly due to the fact that exercise is very

difficult for me to do. I am so limited in function that when I ride my exercise

bike, my legs hurt so bad that I cannot even get off the darn thing.

......anyway would exercises could I do or what else could I do?

>

> Thanks,

>

>

>

> Please post it to the entire group so everyone can see the answers.

>

>

[Guest guest]

--- Weight Gain/ Get the posts rolling

 

Hello all...lets get some posts rolling!!! I will start things out by asking how

many are/have experienced quite a bit of weight gain and what did you do. I have

gained quite a few pounds partly due to the fact that exercise is very difficult

for me to do. I am so limited in function that when I ride my exercise bike, my

legs hurt so bad that I cannot even get off the darn thing. ......anyway would

exercises could I do or what else could I do?

Thanks,

Please post it to the entire group so everyone can see the answers.

[Guest guest]

  I have a hard time trying to exercise also and have gained weight in the last

several years.I have been going to the Y the last couple of years and exercising

in the pool I haven't lost any the last two years but have been able to maintain

my weight.I get on the exercise bike and ride it I use the ones that have the

pedals out front I can't ride the ones with the pedals like a regular bike it

pulls on my back.I can only walk about ten minutes on the tread mill at 2 mph I

ride the bike about 20 minutes at 10 mph it gook me a few months to get up to

that point.

(Indiana)

Surgery for Chiari in 1974 at age 17 which I've always considered it a success

even though Ive always had problems.I new little to nothing about Chiari until

May 2006.I've had 4 surgeries done in the last 3 years they've all been done at

TCI in NY.

>To: CCI <chiariconnectioninternational >

>Sent: Monday, February 13, 2012 10:47 AM

>Subject: Weight Gain/ Get the posts rolling

>

>

> 

>Hello all...lets get some posts rolling!!! I will start things out by asking

how many are/have experienced quite a bit of weight gain and what did you do. I

have gained quite a few pounds partly due to the fact that exercise is very

difficult for me to do. I am so limited in function that when I ride my exercise

bike, my legs hurt so bad that I cannot even get off the darn thing.

......anyway would exercises could I do or what else could I do?

>

>Thanks,

>

>Please post it to the entire group so everyone can see the answers.

>

>

>

[Guest guest]

I am currently taking amytriptylline to control my headaches post

decompression.  The drug does a wonderful job at keeping me functional. 

However, I have gained a HUGE amount of weight.  It seems to have completely

wiped out my metabolism.  Each time I stop the med for a few days, the

headaches come back with avengence.  Has anyone else experienced this and what

other drugs help these headaches without the weight gain??

Robin

To: CCI <chiariconnectioninternational >

Sent: Monday, February 13, 2012 11:47 AM

Subject: Weight Gain/ Get the posts rolling

 

Hello all...lets get some posts rolling!!! I will start things out by asking how

many are/have experienced quite a bit of weight gain and what did you do. I have

gained quite a few pounds partly due to the fact that exercise is very difficult

for me to do. I am so limited in function that when I ride my exercise bike, my

legs hurt so bad that I cannot even get off the darn thing. ......anyway would

exercises could I do or what else could I do?

Thanks,

Please post it to the entire group so everyone can see the answers.

[Guest guest]

I had a lot of fluid retention and weight gain on amytripylline.  For me I saw

no positive side effects.  I use Diamox a diurectic to decrase the pressure in

my head and Gabitril to control my face pain.  Thou for me the headaches were

never the worse of my problems.  I also use neurotin to control pain in arms

and legs.

You could monitor your salt/sodium intake and caloric intake to see if you could

make some changes.

Best wishes for a better health plan.

Peggy

________________________________

To: Rowe ; CCI

<chiariconnectioninternational >

Sent: Tuesday, February 14, 2012 8:47 AM

Subject: Re: Weight Gain/ Get the posts rolling

 

I am currently taking amytriptylline to control my headaches post

decompression.  The drug does a wonderful job at keeping me functional. 

However, I have gained a HUGE amount of weight.  It seems to have completely

wiped out my metabolism.  Each time I stop the med for a few days, the

headaches come back with avengence.  Has anyone else experienced this and what

other drugs help these headaches without the weight gain??

Robin

To: CCI <chiariconnectioninternational >

Sent: Monday, February 13, 2012 11:47 AM

Subject: Weight Gain/ Get the posts rolling

 

Hello all...lets get some posts rolling!!! I will start things out by asking how

many are/have experienced quite a bit of weight gain and what did you do. I have

gained quite a few pounds partly due to the fact that exercise is very difficult

for me to do. I am so limited in function that when I ride my exercise bike, my

legs hurt so bad that I cannot even get off the darn thing. ......anyway would

exercises could I do or what else could I do?

Thanks,

Please post it to the entire group so everyone can see the answers.

[Guest guest]

It is an interesting subject.... I've always had hormonal issues and problems

with weight along with it. But after surgery everything just got worse. My

surgeon told me to wait 2 years for cycles to come back and even out because the

body has to adjust. They said that they had only had one patient that they sent

to a specialist after the 2 years to have hormone therapy done.... They told me

it was a horrible and long experience for her and that I should avoid it at ALL

cost! It's now been just over three years and my hormones are still wacked and

I'm about 50 lbs heavier than at the time of surgery. For a 24 year old to have

what feels like hot flashes...is distressing and the weight doesn't help

anything. I've tried to figure out what to do about it as well. Have tried diet

and exercise but it is very difficult to be very active without flaring other

symptoms up again. Hope someone on here has some good suggestions! Cortney

[Guest guest]

Hi guys...

I know this is an area that is of interest to many. That being said, I

don't think that there are any hard and fast answers available. Sorta' like

sooooooooooooooo much with chiari and it's related issues.

I think that MUCH of this must be addressed on an individual basis. The

issues/limitations that come with a CM diagnosis are so varied. It goes back

to somewhat the " new normal " concept. What is " normal " for the given

individual????

Prior to my diagnosis ( a month to be exact) I was a certified fitness

instructor, teaching multiple classes@ week.

Over the years since, I have dealt with all the various CM issues...... and

made adjustments, as required. I prefer the concept of sorta' nudging the

envelope with CM, not really PUSHING it. I tend to believe that this can do

more harm, than good.

The weight gain has been particularly annoying. I personally feel that, at

least with some of us, it has to do with the affect the CSF pressure has on

the pituitary . ( essentially empty sella syndrome) This can affect

sooooooooooooooooooo many systems and areas of the body. And this is VERY

tough to diagnose and treat. That being said, I have had some success with

just a really nutritional diet. Whole grains, low glycemic carbs, low fat,

addition of mufas, etc.,etc.

Yes, I do feel that a good diet with necessary supplements is a key part of

anyone's regime. I feel that this has helped me a great deal. Particularly

important with anyone medically challenged. That being said, I have had my

various vitamin levels checked and they are fine. I was pleasantly

surprised! Are their additional tests that might prove helpful? Perhaps

so....

I,like, have been able to maintain my weight, which I have to believe

is a " good thing " . It is much lower than immediately following my surgery.

Would I like to lose more? Definitely, but not an any cost.

I hope that post op PT techniques, specific to Chiari, will continue to

develop. This could be helpful to so many.

Take care,

Sally R... Decompression '91, Hydro, VP shunt, 2 shunt revisions, Feeling

pretty good on NO meds in Bethlehem,Pa

Weight Gain/ Get the posts rolling

>

>

>

>Hello all...lets get some posts rolling!!! I will start things out by

>asking how many are/have experienced quite a bit of weight gain and what

>did you do. I have gained quite a few pounds partly due to the fact that

>exercise is very difficult for me to do. I am so limited in function that

>when I ride my exercise bike, my legs hurt so bad that I cannot even get

>off the darn thing. ......anyway would exercises could I do or what else

>could I do?

>

>Thanks,

>

>Please post it to the entire group so everyone can see the answers.

>

>

>

[Guest guest]

Hello all,

My observation is that the worse my level of fatigue got,

the more weight I gained. For the whole of my life prior to

my head and neck injury (which seemed to trigger all of

this off) the heaviest I weighed was 11st (154 pounds) but

that was when I was 9 months pregnant, my general

weight when not pregnant was around 10st (140 pounds),

I may have varied 3 or 4 pounds either way but for most

of my adulthood, that was my weight, until I was 48.

However, almost 10 years after my accident, I am now

13st 10lbs (192 pounds!) aaarrrggghh! With no hope of

ever 'burning it off' as I seem to have run out of available

energy.

Although generally I put weight on a little 'all over', so

my original shape just got a little bigger, I now notice

the bulk of my weight is to the front of my body, I

believe the fat is being stored in something called an

'Omentum', if I've remembered it's name right. I too

would like to ask a weight related question of the group,

which is:

If you stand 'sideways on' looking at a full length mirror,

is the bulk of your fat to the front of your body, over

your stomach and abdomen?

Regards

Barbara

(UK)

[Guest guest]

I was on that for a while and ended up having pretty bad side effects from it so

I quit. After surgery, I was given Diamox 2-4 250 mg tabs up to 4 times a day as

needed. I started off with the largest dose for several weeks before I noticed

the change. But once it kicked in, it was a life saver for me! Then my surgeon

told me to take as little as would control the headaches because your body will

respond better to it. For the first while, my dose would change daily and then

as I healed, I could go longer without it. I would definitely give it a try!

Cortney

[Guest guest]

Hi Everyone,

 

 

I have been a member here for a long time and watch the posts, but don't post

too often. I just find for me, being on the computer is life altering. I have

CM, EDS, CCI, TC, and Celiac Disease.

 

I really want to chime in here on the topic of weight. I have a lot of

experience in the area, and might be able to help at least one person. 

 

Just so you know, I am 46 and currently weigh 160 pounds. I used to weigh 230

pounds and I am 5 " 5 " . Before Chiari got a hold of my life I was 140 but very

active and not a lot of body fat. I weighed 230 pounds well before my Chiari DX.

I had hypothyroidsim and because they suspect it is central(now), the TSH test

they were doing was of no use. I was close to death when they figured it out. I

still had almost 100 pounds to lose, taking thyroid replacement is not a magic

weight loss pill.

 

This is what I know and believe , take from it what you want. If you would like

to talk more about it, please ask for my phone number. The computer kills my

head.

 

When I went gluten free several years ago , well before my CM DX, a lot of my

symptoms disappeared. I have Celiac disease but gluten causes problems for

everyone, just my belief because the food industry has altered wheat

through genetically modifying it. I had arthritis type symptoms where I could

barely turn my head  during the night because the pain was horrific in my neck,

it also affected my hands and fingers, and spine. I also had problems with my

skin and rashes ; all that disappeared after going gluten free. I didn't know I

had a milk protein and walnut allergy until last year. The elimination of those

two things helped my gut issues, and also the pain I had in my NOSE! I was

having an allergic cross reaction in my nose and it caused me to shed " boogies "

that weren't boogies at all. If I cheat and indulge in gluten free cheesecake,

my nose pain comes right back. I don't do that anymore. It is just causing

inflammation through out my

whole body, just not my nose.

 

What I really want to talk about is looking at your diet in a different way.

Look at it as not about losing weight, that will come naturally for most, but

look  at it as reducing inflammation. Science is just starting to scratch the

surface of diet and inflammation.

 

What is a diet that is inflammatory? The SAD , Standard American Diet. What can

you do? Read and educate yourself about what food is, and what it is not.

 

Sugar is inflammatory in all of its forms except natural whole fruit, frozen is

okay if not in sugar....canned fruit is not.

 

Flour of any kind is inflammatory....it breaks down into sugars as well. I could

give a chemisty lesson if you want, just ask me.

 

Artifical sweetners, regardless the FDA says they are safe,  are not good

for our bodies. You can thank lobbyists for getting them onto our shelves. Money

talks.

 

Artifical anything should not be put into our bodies, please don't eat fast

food! Processed meats are not good either.

 

There are SO many things you can eat...veggies, fruits, lean meats, whole grains

and rices. It takes a different mind set, and maybe asking for help from family

members. You can LEARN to like things you don't...allergies you are stuck with.

 

If you say it is too expensive to eat that way, you need to call me. We can

figure out in your budget where you can find the money. If you smoke or eat

out...there it is. If you work fulltime and don't have the energy, call me

because we can figure that out too.

 

I do not do well with any grains or rices. The reason my weight climbed to 160?

Because I was eating foods that I know I shouldn't and not taking  my pain meds.

For some odd reason, eating relieves my headaches...as long as I am chewing.

 

Let me help you, and you help me. I need to lose twenty plus pounds. I will

glady allow someone to hold me accountable for what I said. I will help you as

much as you need.

 

I was the gym rat and was still fat, until I got my diet in line. It is 80% diet

and 20% movement. Before anyone bites my head off, I know all about empty sella,

I have it. Yes, hormones and drugs play a part but until you really, really

clean up your diet....don't blame them just yet.

 

One more thing....we all know extra pounds adds pressure to our knees. Did you

know that extra pounds also adds pressure to your head?

 

Sincerely,

Lynn

[Guest guest]

Soooo.... Thought I would share something on this subject. I decided to call my

surgeon's office and ask them about hormone/ weight gain issues. The nurse told

me that if she could give me an answer, she'd be the most popular person on

earth right now! She said I was about the 5th person to call in the last week or

two with the exact same symptoms. She also said that all of their female

patients have struggled with this issue after surgery. They don't know what the

cause is and therefore don't know how to treat it. She suggested getting some

good blood work done to check thyroid and hormone levels. If nothing comes up

there, to go see a good gyn for further testing. If nothing shows up wrong, she

referred to it as an " unknown monster " somehow caused by the chiari or the

surgery....

Cortney

[Guest guest]

yeah, i'm going to look into some of the test that my doctor is using to test my

levels when I go see him. Maybe we can get a private study going with the new

patients. Would be very interesting to find out!

Bea

[Guest guest]

The nurse at my surgeon's office actually told me that if I'm able to find

anything out in my search, to let her know! They just seem at such a loss to

know what to do about it. It would be great if patients could help figuring it

out.... Cortney

[Guest guest]

,

I was very lost as well! All I knew that my life depended on getting my Vit. D

level up!

I was on board with my pcp and a nutritionist for quite some time. Because i

just had baby was feeding naturally and I needed an additional fusion! We knew

I was behind the ball and devoted all of our attention to it! With no results

and my vit D was only a level 5!!!!!

That is rickets for children!

Ok, there's a medical reason my body is not absorbing my vitamins and nutrients.

After doing some more test (that i had to pay out of pocket) I found out that I

had no libido and the rest of my hormones where completely out of whack as

well. What? I was only 35!!!! Come on!

I had gained over 50lbs in 4-6 months, even though i was on a great diet.

I was tAlking to my girlfriend, explained my symptoms and the lab results and

she said to give this company a try! If anything to get rid of the hot flashes

and the night sweats.

For those reasons alone, I gave Body Logic, MD a try. After two months I felt a

difference with my energy level and the hot. Flashes and night sweats where

completely gone! In six months my vit D was up in the 50,s! Loved it!

It's all holistic and the good hormones the body needs to function, through

creams and normal caplets. Very easy to fallow and the doctor is wonderful!

Listened to all my concerns with my medical issues!

We really don't quite understand why this is happening but this is something

for those who are fused with EDS and can not even run across a street unless our

lives depend on it!

Dr. B @ TCI has even given me a limit on how long I can PERSONALLY be in the

pool with my kids. Everyone's body is different and need to speak with your

doctor before doing anything like this! But like I said, if I could not get my

fusion to hold my life would be questionable! I was desperate, and it worked

out for he best, or at lest I think and feel so!

And oh that weight is gone!

Best of Luck

Bea

June 15, NYC United walk for CSF!

Sent from my iPhone

> The nurse at my surgeon's office actually told me that if I'm able to find

anything out in my search, to let her know! They just seem at such a loss to

know what to do about it. It would be great if patients could help figuring it

out.... Cortney

>

>