Chiari Malformation Community
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1571533 tn?1322947109

Weight Issues or Exercise

Hey all, I was wondering how many of you out there have experienced trouble maintaining weight since your chiari symptoms have surfaced or since your decompression surgery??

I had surgery in Feb and im still in a lot of main almost every day, needless  to say I feel like I jsut keep gaining weight. I would love to go back to my 3-4 hours a day working out I did and LOVED over a year ago, but the pain stops me. How many of you have come up with a solution?? Or any idea that have worked, kind of worked,  or you havent tried yet?

Its taken me a long long time to actually post this in the forum, Im horrifically embarassed by the weight Ive gained-  Literally 50 pounds in jsut over a year and Im just as miserable over that as I am literally miserable from the chiari, maybe more... If you have any ideas or anything has helped lemme know, here or in a PM.
10 Responses
620923 tn?1452919248

  Hi Kara....I am 2 yrs post op and am having issues find the right type of exercise for me....I recently lost some weight as my thyroid  is maintained at  a normal level with out meds...this is post op!!

SO for the past yr I am hanging at this new weight, that is still not where I want to be, but is less then I was last yr this time.....

I found a Dr that is working with me to devise an exercise plan for those of us with limitations due to pain and the results of chiari and the surgery.

  As I complete the steps and find that they work for me I will share this with u...but I am just starting and do not want to hand off something especially to someone that is still healing...I know u want to do more, but take ur time and allow ur self to heal.

   Have u checked ur thyroid?....

Avatar universal
YES.  Don't feel embarrassed...this has got to be a common problem.

Before my CM symptoms started, I had gained a lot of weight and was trying to get it off by biking and going to the gym...then within a year my symptoms started.  It has been miserable not being able to work out!!  If you did work out a lot before CM and then stopped cold turkey, you probably would gain a lot of weight by no fault of your own.

For me, I had to get on the right kind of meds to manage pain.  Even after I had my daily symptoms under control, I would still get exertion headaches real bad.  Also any exercise that involves neck movement kills me.  So I told my dr about the exertion headaches and he gave me a low dose of BP meds.  It has made all the difference!!

I swim, but backstroke only.  Anything else puts too much strain on my neck.  I also do some yoga, but avoid any movements that involve my neck or bending over.  I stick with more of the breathing training kinda stuff...meditation and all that.  I plan to try biking again, but haven't yet.

Diet is also incredibly important for us.  Watch your portions carefully, eat tons of veggies, etc.  I'm going to see a nutritionist soon to try to help me with that.  If you can stomach it, going with vegetarian diet will probably make a huge difference.  I don't think I can go quite that far.

Good luck
1759188 tn?1324681908
   thank you karalee. i was going to the gym daily, i fell and was cursed with the chiari, i trucked on but relised it was time to stop when i fell off the treadmill and the stationary bike set off my vertigo.  i went from a size 12 to a size 22, i gained 50 lbs. with the bull im gettin from doctors i am joining next month.  im tired of them tellin me ( if i lost the weight )  i have to, my sugar is sky high , my tri are off the charts, i'd rather be healthy and in pain. good luck
1755089 tn?1376057155
I would like to lose my extra weight too but for the last 6 years I have gained more than I have loose weight.
1571533 tn?1322947109
Wow!  Im so glad I got responses, I was worried this post wouldbe looked over.

Selma--Id love to hear what theyre doing for you, and definately if it works! and I have had my thyroid checked, multiple times, but now that i think of it, it has not been checked since my chiari kicked back in, and not since the surgery either.. Im thinking about checking out this dr in erie, who specializes in weight loss, and i would need to get a chem panel and ekg.. but i never thought about having my pcp just check again.. i never thought twice about how it can change.. and althugh i would be thankful for my thyroid to be part of it, it probably isnt. but i will have them do it when i get my next appt.

Jen--I did work out a lot before my chiari kicked in,again, i was doing cardio/weights in the AM (1hr), cardio/weights in the PM(1 hr), along with a noon jog with the puppy, and yoga (1/2 hr) before dinner.. and if i felt up to it I would go to the gym or use my elliptical before bed. Right after I split from my hubby and moved home I started doing p90x-twice a day along with extra running or elliptical.. It would be a normal day for me to workout 4 hours.. and now i spend 99% of my life on the couch or in bed..
I have a normal low running BP but meds for low bp dont agree with me. And right now i have NO doctor that will help me with the pain. I had weighed 170, which is where i am now,in 2007 I went to a dr for weight loss, and i lost 40# with their help, and within 6 months lost a total of 55#..  and since then, up until last summer, exercise was the majority of my life. I was working for jenny craig as a weight loss consultant, so believe me i know the importance of portions and eating good food. --this girl could NEVER handle being a  vegetarian-- ive tried it probably a dozen times lol. i end up thinking about meat every time i eat.

Sandy--this condition i think is detrimental to exercise and an active lifestyle, atleast from what i have experienced.. I went about 5 years, with persistant migrains, but not constant, and not daily pain. And i was sure not happy when the daily pain kicked back in full gear.. Ive always thought, id rather be healthy (and of course feel good about how i look) and in pain than the opposite, and i still do.. but no matter what i do, the pain doesnt stop i dont know where i should go from here, but it looks like you have a plan and i wish you tons and tons of good luck, please let me know how everything goes when you start and keep me in the loop as to how youre doin.

drew-- what have you tried???
620923 tn?1452919248

  Just be mindful that ne diet meds can cause a Chiarian to develop ICP and the fact most of us still will occasionally have pressure HA's u do not want to add to it with diet meds...so do not go that route.

  I was very surprised at the change with my thyroid panel.....post op.

Avatar universal
Hi Karalee,
I am new to this forum. I had surgery about a year ago and am still struggling with pain and nerve damage. Pre-surgery I worked out at the gym almost every day. I lifted weights and did a full cardio routine. I returned to the gym 3 months after surgery with the full support of my NS. However, it was very hard and very discouraging to see how limited I was. Obviously, because of neck, back, and shoulder soreness, weight lifting was out of the question. The treadmill pounding was a mess, and the rowing machine that I used to love is no longer an option. After considerable frustration, I finally decided to do anything that I could do and stop worrying about what I couldn't do. So, I started taking many more 3-5 mile walks and just went slower than my former fast pace so the pounding wouldn't be a problem.  I find that the elliptical (the kind that doesn't involve the arms) works great for me as long as I don't read on it because then I tip my head forward and it causes neck pain. It doesn't cause me any pain at all and actually helps with the nerve damage in my legs. I also worked with a great PTherapist who taught me a whole new set of core exercises and stretches to counteract the problems created by cutting the neck muscles, etc.  It is important to keep your neck in a neutral position at all times but there are many strengthening exercises that you can do that won't bother your neck at all.

For me, weight gain has been a struggle but once I forced myself back to the gym I could get control of my eating and get most of it off again. Some days were really hard, and still are because I get so discouraged but I find that if I force myself to go anyway my gym buddies and the staff really help me keep plugging away and are so encouraging that it really helps.

Has your NS discussed any PT for you? Just make sure you find a really good PT who either knows about Chiari or is very interested in learning and will talk with your NS about what is safe for you to do.

Try not to get too discouraged. I had the most improvement in my symptoms from months 6-9, especially in terms of nerve pain slowly getting better.  I certainly improved in the early months but I really started to believe that I might get my life back at about 9 months. I guess time will tell!

I also swam for a while early on and it felt great to relax in the water. I agree with Selma though that you need to stick to the back stroke or you will bend your neck too much.

Good luck-hang in there!

1663373 tn?1333639589
I too am bigger than I have ever been and am horrified by that I was really skinny before surgery (because I was so sick!) and food tasted horrible.  Food tasted really good for a couple of months but I am back to no appetite and still trying to eat good but it doesn't matter I havent lost any, not that I am trying.  I have returned to work this week for school and walking a ton so hoping that helps.  A PT friend shared with me that many people that have traumatic brain injury gain weight for unknown reasons and that the brain surgery could almost be in that category.  Hang in there I will hang with you!! Good post!
620923 tn?1452919248

  Keep in mind, that in addition to our thyroid being affected with chiari so is the pituitary gland for some, and that could affect weight as well as the thyroid...

I noticed some weight loss after 2 yrs being post op..with no changes except in my labs for my thyroid....I no longer need the meds.

We all need to give our bodies time to heal......
1759188 tn?1324681908
  hi karalee,
                   my workout is on hold. when i fell i tore c1,2,3  and herniated 6 n 7  i was told to leave then alone and i did. i have been in the er 3 times this week. i have an appointment on the 7th with a "GREAT" doctor. keep fingers crossed for me   thanks
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