Chiari Malformation Community
Wednesday's Weight Inn ~~~~ 2013
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This patient support community is for discussions relating to Chiari Malformation and Living with Chiari Malformation.

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Wednesday's Weight Inn ~~~~ 2013

Hi All...lets get started...first who all wants to participate?

U do not need to tell us ur weight or how much u want to lose,u may just want to weight in on current events in the news or on a topic Chiari related.....  

We can also bond over weight loss trials and tribulations as well.....recipes will still be a thread on Thursdays.....

It seems no one was into the exercises for those with limitations.....but if neone is...u can post here about that too....
64 Comments Post a Comment
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620923_tn?1416285879

  Hi all...I guess we have a few newbies that do not know about our daily threads on the weekdays...ne questions...please ask
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Avatar_m_tn
I've actually lost more weight than I wanted to. With my swallowing issues eating is such a chore. :( Can't afford to lose anymore.
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4689100_tn?1358801534
Hi Selma,
I am interested in the weight in. I am and have always been weight countious,lol. I am not a big person, nor do I wish to be, but I find it very hard to excercise, I have tried various things and they all seem to be too much for me. They all make my head feel as if it will exzplode, i get dizzy, etc. But I can walk!!! LOL, wish could do more than that, do you have any suggestions or is there something you have found you can tolerate that may work for some of the rest of us? And do you also struggle with the same things as far as the exercise goes?
Thanks for your input.
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Avatar_f_tn
I've been shedding weight since surgery (6 mo.).  I feel like my metabolism has returned more to normal, but my stamina has not!  So I feel ambitious & restless, but if I do too much, then I feel sick.

I intend to find the discipline to practice qigong or yoga.  I feel like I have to hustle to fit it into my day, andI'm not ready to move fast, especially when I don't sleep well.

Have you tried an arthritis-type exercise class in a pool?   It was too slow for me--I got cold--but dressing & undressing, showering & showering, driving & driving was exhausting.
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620923_tn?1416285879

  I do have some exercises for those interested  given to me by a Dr for those with limitations...Chiari does limit what we can do,, and I explained to him the situation and gave me exercises he felt we should be able to do.....

I will start posting them here for those that want to follow and for those losing weight and not doing much to do so, except for those not eating right....try Boost or Insure to get the protein u need ...but talk to ur Dr first.

And if u r eating and losing look at the possibility of a thyroid issue, make sure they do an ultra sound of ur throat and do lab work for an auto immune thyroid which inculdes free T3 and free T4 TPO antibodies and TSH.
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1755089_tn?1376057155
I need to lose weight!!! But it doesn't work!!!
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620923_tn?1416285879

  Same here....have u had ur thyroid tested...and not just the TSH but for an auto immune thyroid issue?
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Avatar_m_tn
I'm interested in knowing what exercises are acceptable. :)
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620923_tn?1416285879
  
Exercise with limitations-Exercises to gain balance, motor coordination and strength -


  From a seated position: Raise opposite arm and leg to the side. Make sure you don't do any overhead movements. Do it five times each.


  From a standing position and holding to a wall or a chair see if you can raise one foot from the floor and hold it for five seconds then change legs.

  There are many ways  we can  gain balance, motor coordination and strength but it is important that we set up a base.

Let me know how these work : )

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1755089_tn?1376057155
No I did't got my thyroid check, my doctor says it useless since I don't have all the signs like brittle hair and nails, ect...
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620923_tn?1416285879

  Are they symptoms of a reg thyroid condition or an auto immune thyroid condition?

Fatigue
Depression
Modest weight gain
Cold intolerance
Excessive sleepiness
Dry, coarse hair
Constipation
Dry skin
Muscle cramps
Increased cholesterol levels
Decreased concentration
Vague aches and pains
Swelling of the legs

Keep in mind not everyone has all the symptoms so u do not have to have the hair and nail issues in order to have this....
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1755089_tn?1376057155
Thanks I'll bring that list next time with highlight on my symptomes. Mabey she'll get me test then!
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620923_tn?1416285879

Keep in mind this is an autoimmue condition so they can not test just the TSH, in addition they need to look at the free T3, free T4 and TPO antibodies.

A ultra sound of the thyroid is helpful in seeing if u have nodules too, bcuz with Hashimoto's thyroiditis u can go from hyper to hypo to normal levels even tho u have the condition.
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Avatar_f_tn
Before getting a blood test try this tried a true method.
Take your temperature under your arm for 5 days just as you wake-up, move as little as possible.
Make sure you use a glass thermometer, NOT digital.
If you're pre-menopausal start taking your temp. on the second day of your period.
Normal basal temp. is 97.8 to 98.2.  If it's below 97.6 you probably need treatment.

I know exactly where you're coming from....I was on nutri-system for 6 weeks lost 6 pounds then started gaining weight!
I researched leangains and decided to try it (now being hyped as the 8 hour diet). Don't buy the book though. Just go to leangains.com for the basics.
I have lost 4 pounds in 11 days.  That hasn't happened since I was 19yo! I was the kinda person who religiously ate breakfast every morning and would be starving by 10am or before.  Feeling so hungry I could kill someone! I figured what the hell, I'll give it a go. Sure glad I did.  I get hungry in the morning but not like I did when I ate breakfast.
I eat a lot less throughout the day because my stomach has shrunk. I do eat sweets and I do drink beer...AND I still lost weight.
I have my first meal at 11am and stop eating by 6:30pm. With my Chiari and herniated c-spine disc I walk about a mile 3 times a week. So, it sure isn't the exercise!

Good Luck!
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620923_tn?1416285879

wondering if neone has tried the exercise I posted and how many u r able to do? Neone ready for the next exercise or do u want me to wait till next week?
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620923_tn?1416285879

  Still wondering ????
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620923_tn?1416285879

  helloooooooooooo?
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Avatar_n_tn
I would like to know what diet you did. I have lost almost a 100lbs since last january. I know the way i did it was not healty. So i need something more healthy. I hope i don't gain anything back because of not being able to get around form the surgery. what exercise can i do after surgery.

Thanks for all your advice
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620923_tn?1416285879

  This thread was talking about exercises for those with limitations and we share recipes...

I have not done ne diets, but do try to eat healthy....I also found that having the right suppliments helps too as an EDSer my body does not properly absorb the vitamins and minerals and can affect my  Metabolism .

Just getting that sorted has helped me lose some weight, and I am trying to bcome more active...lol...
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1755089_tn?1376057155
Well I did the exercises. I'm trying to eat healty. But yesterday I had a binge eating sesion my first one in more then trhee years. I feel realy bad about it. I'll need to call my nutritioniste and be more carefull with my coping mecanisme.
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620923_tn?1416285879

  Next time u feel the need to eat like that pop on here and chat : )

I am  glad u did the exercises...how many can u do?

Once u get the amount up and want to add another exercise let me know and I will add one.
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620923_tn?1416285879

  Neone else doing the exercises...or ready for the next set?
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4816750_tn?1368808270
Well I will say I have goined weitght, Since surgery and was before.  When surgery I lost over 25 lbs since wasn't able to eat for 6 weeks.  Now it has been 8 months and I have gained weight.  I weigh more now than I did before surgery.  Before I weighed 205 and now I weigh 219.  I had to buy new pants cause the 34 waist that I have wored for 20 years don't fit.  So I am back in the gym again got lazy and quit going.  I do mostly walking and using the machines with only the limits I can do.  So no straining.  So that is my story and sticking to it
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620923_tn?1416285879

  Good for u that u r able to do those and have access to a gym....if they have a recumbent bike that is something that is good for us to do....

For those that do not have a gym available to them or equipment I will post exercises and we can add to them as we go....

No one seem to take me up on them.
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620923_tn?1416285879

  Ne one else looking for the exercises?

I have been doing them just to stretch and to keep active.....and am building up to using 2 1/2lb weights.....I hope that does not cause an issue....I know 2lbs does not sound like much, but I also know it can feel like a lot more when u do not usually use them....we shall see...
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620923_tn?1416285879

  ne one?
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2063048_tn?1390828211
Hi, Selma! I went for a regular check up this week and I have gained weight since surgery. I'm just not able to do much. I try to do stretches and walk with my kids, but I have to be careful because I get dizzy and my left leg goes numb. I really want to build my strength and stamina back up, so I'm going to I've those exercises you posted a try! I do the range of motion exercises for my neck, but even that makes me all wonky!

Thanks for doing this!
Annie
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620923_tn?1416285879

  Even tho u may feel wonky u have to do the neck exercises to prevent the muscles from getting tight and help prevent scar tissue from forming, mayb u r doing too much or incorrectly???

Make sure u use heat b4 u do the exercises to help relax the muscles...and heat after so they stay relaxed.

Do u have a bulging disk in ur cervical spine?

No worries,...start slow and add only once u do not feel after effects of the exercises....if u need me to add more let me know  : )
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620923_tn?1416285879

  Hi all how are we doing with exercises and trying to lose weight?
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620923_tn?1416285879

  Hi all how r we doing with exercises and losing weight?
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Avatar_f_tn
Well, I have been doing your exercises for my neck that you posted, and just like Annie said I get wonky doing them!  I am still trying though!  I just went for a short walk, so that was nice too. :)  I had joined WW online a month ago, that has helped.
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620923_tn?1416285879

  Are u using heat b4 and after the exercises?

And do not push or strain...these should be done slowly and build over time....and make sure u r only doing the ones I mention below the pic of the chart.....

Glad WW is helpful.....keep me posted  : )
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Avatar_f_tn
I have been doing them after I shower, does that count?  Definitely not after though.  Does that help?  Thanks for the tips!
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620923_tn?1416285879

  The thing is u may get the area warm while in the shower, but I think having the heat on it directly is better, and u really need it afterward as well...it helps prevent the muscles from getting tight...mayb that is y u feel wonky after doing them?

Plus the heat of a shower is heating all of u, and if u have an underlying POTS issue this can cause u to feel wonky after the shower too....so be careful.
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620923_tn?1416285879

  Hi all how are we doing this week with weight and exercise?
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620923_tn?1416285879

  BUMP
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4816750_tn?1368808270
Weight -- thank you gabapetin made me gain an extra 25 lbs.
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620923_tn?1416285879

  Gabapentin did more then make me gain weight...ugh...I did not like it...

And I keep getting larger....sigh, I am eating less... and when I try to go about things  "normally" I have these awful spasms....sigh....it is a vicious circle....but I have tried the exercises....I need a place to get out and walk....

Chiari plus getting older= a wider me : (

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3060676_tn?1371241540
I know it is Friday, but by time Wednesday rolls around again, I'll forget to post! :P

On my quest to gain weight back, I've not only succeeded, but I gained more than required! All I did was go on a cruise! Ice cream comes out of every wall, and the dinners are 3 course! I need new clothes hahaha but I will make all my doctors happy! And I was told that I actually look healthy!!
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620923_tn?1416285879

  Congratulations....yay !! Which cruise did u go on? I have been dreaming of going on one....

My issue is to loose weight not gain, but I have gained very well....lol...I am hoping with my DD moving back to town I will get out more and that should help me....lol...

SO glad u had something positive to share with us,...hope u r going to pot pics from ur cruise.....
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620923_tn?1416285879

  Sorry I am posting this late....should have posted last night..

So how are we all doing with exercising or diets?
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620923_tn?1416285879

   Hi....so where is everyone?

  Pre Op pr post Op?
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620923_tn?1416285879

  Hi....I will try again this is ne one interested in this thread ?
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1891806_tn?1391122637
Selma,

I really want to exercise, but I can't. Anything physical seems to aggravate my tarlov cysts and then I'm down for days. I'm not sure what I can do physically at this point.

As for my diet...it's terrible. I am at a healthy weight for my height but I really could eat better. I am 5'9 and weigh 145.
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620923_tn?1416285879

  I have a few things that are for those with limitations, and we have to start off slowly and add so we do not over do it......

May I ask, what have u tried that did not work?
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1891806_tn?1391122637
I am pretty limited to just walking. Anything else causes flare-ups of my cysts and neck pain. My legs are pretty weak due to nerve damage so I walk short distances and then rest. If you have any suggestions of something else I can do, I am willing to try it.
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5785931_tn?1375097111
Hi Selma,

I'm new to medhelp and I've recently gone for a chiari decompression. I am completely mobile and balanced, experiencing only a small amount of difficulty moving my head towards my chest (but I've heard that that will ease up in time) . I'm keen to get active, however I'm not sure what type of exercises are safe?

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620923_tn?1416285879

  Hi and welcome to the Chiari forum,

  May I ask how recent was ur surgery? It is typical to feel great and that u can do a lot shortly after surgery, but as time goes on some of the symptoms return as the nerves heal, so u do not want to do things too soon just bcuz u feel better u should take it slowly.

I do have a exercise to start with posted above I will repost it below, and suggest u start with this, since u have no issues walking u would want to add some walking, but bot up steep hills or  outside in extreme heat.

Please let me know when u are able to do these and add to them and I will add more to this list.

Oh and I hope u r doing exercises for ur neck to prevent the muscles from getting stiff or scar tissue from forming.
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620923_tn?1416285879

  Here is a sit down exercise-

Exercise with limitations-Exercises to gain balance, motor coordination and strength -


  From a seated position: Raise opposite arm and leg to the side. Make sure you don't do any overhead movements. Do it five times each.


  From a standing position and holding to a wall or a chair see if you can raise one foot from the floor and hold it for five seconds then change legs.

  There are many ways  we can  gain balance, motor coordination and strength but it is important that we set up a base.

Let me know how these work : )
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5785931_tn?1375097111
Hi Selma,

My surgery was less than a month ago! on the 27th of June. I've been having quite a speedy recovery, my doctor and physical therapist were very impressed with my progression after the surgery. I have been taking it quite easy, just walking and doing some neck stretches.

I did have a very unique case, so much that the doctor's didn't know whether to operate or not! I suffered from headaches, very inconsistent ones and I had a large syringomyelia with no other symptons. I've been quite athletic and active for most of my life and even played sport on a national level. So being diagnosed earlier this year was a very big shock as none of my functions were compromised as one would have expected them to have been, especially with a syrinx of 12mm.

Having done the decompression surgery, I am well aware that I may never play full contact sport again, so I was just wondering what are on the cards for someone like me?

These exercises are great:) thank you for sharing!


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620923_tn?1416285879

  Cards, no idea....we all are so different and so is the way we rebound after this surgery, much has to do with our  activity level pre op and if we have ne other related conditions.....

U may do better then the average person, but I have to warn u to go slow....so many rush back to normal activities post op bcuz they feel so much better then have a set back....so as my avitar shows a turtle...slow and steady ,. : )
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5785931_tn?1375097111
I promise to go slow :)!

Thank you so much for all of your time :)

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620923_tn?1416285879

  Hi All how are u doing with the exercises?
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1891806_tn?1391122637
Haven't done any yet. Just went to a TMJ doctor, as requested by my pain doctor, and I ended up getting 13 shots on the right side of my face, cheek, behind my ear, lower scalp and shoulder. Of course he said I have TMJ and $5,600.00 after todays visit, I  left so frustrated. My face is now severely bruised and painful. So I wonder if they are just looking for things because of money or do I believe I have this too?
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620923_tn?1416285879

  Have they looked to rule out EDS? TMJD is something associated with EDS and EDS is related to Chiari......we go round and round in circles....sigh.

I had someone suggest that I also had it, my dentist checked and said I didn't. but I could try a mouth guard u get in a sporting goods store...u shape it to the size of ur mouth with hot water.....and these are less $$ then the ones the Drs offer for TMJD.


Sorry u r in so much pain.....try the mouth guard....see if it helps and ask to be checked for EDS.
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620923_tn?1416285879

  Hi all is neone following the exercises?....working on weight issues?
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620923_tn?1416285879

  ?????
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1891806_tn?1391122637
I'm still afraid to try exercising for fear of a flare. With that said, I am starting to put a little weight on becuase of a few of my medications. Makes things more depressing.

I think I can....
I think I can....
I think I can....
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620923_tn?1416285879

  That is y I have posted exercises for those of us with limitations.....some of the exercises are while seated...and should be added to slowly and allow u to adjust to them to help avoid a flare....

Walking is one of the best things we can do.
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620923_tn?1416285879

  Hi if we have ne newbies to this thread please start at the top of the thread and slowly work ur way down....

Do not rush ur way thru the exercises......and make sure if u r recently decompressed do the neck exercises several times a day to prevent the muscles from getting tight and scar tissue from forming.
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620923_tn?1416285879

  Hi all how are we doing with exercising?
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620923_tn?1416285879

  Ne one to weight in this week...about diet or exercise ....
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620923_tn?1416285879

  Well I am going to ask again...neone working with exercise or diet?
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620923_tn?1416285879

  ne 1?
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