Is there a link between Chiari and weight?

General
1

I'm not talking about getting fat because you have symptoms and can't be active. I'm talking about gaining weight BECAUSE of the chiari. Is that possible? Most doctors say no. But the first surgeon I saw, that I DID NOT LIKE - but is a renowned surgeon in my area, said my pituitary gland was being squished by having so much spinal fluid in my brain and could be causing hormonal problems, including the fact that I had gained so much weight in a short time and that I am so young and never get a period - I'm on the pill though and was told that's normal and the other doctors or surgeons I've talked to (3 of them), said they never heard of such a thing as the pituitary gland thing...so I didn't take it seriously...until now - 6.5 weeks post op.

I was diagnosed with Chiari in Oct 2011. I first started having symptoms that took me to the doctor and found the chiari in September 2011. BUT, back in 2008, I started gaining weight, first I put on 25lbs in a month or two that I just couldn't get off. I worked out and hadn't changed my eating habits. I kept that 25lbs for a LONG time, I even went to a 12-week weightloss class and had to eat NO CARBS the whole time and when everyone else lost 20-30lbs, I lost 11. As soon as I started eating carbs, the 11lbs came back and I started experiencing a tingling in my left thigh. I freaked me out but I ignored it. Then I gained another 60lbs over the next 6 months to a year, I'm not sure how long, but it honestly wasn't that long. I didn't eat bad foods, I felt like it just crept up on me and before I knew what happened I couldn't fit in my clothes anymore! I went to the doctor and told him about my thigh tingling finally and he said it was because I was overweight.

Now, 6.5 weeks after surgery, I haven't felt a single tingle in my thigh. I've had some tingling in other areas that I've had pre-surgery, but not my thigh. And I'm down 15lbs and I'm eating just the same as I had before surgery.

Maybe it's the placebo effect, me thinking that it's all correlated and so it's causing all this, but I can't help but think what the first surgeon told me...and how hard it was for me for the past 4 years to lose weight and how miserably I failed every time I tried, and now...not even 7 weeks after surgery I've effortlessly lost 15lbs.

I'm really curious if anyone has even heard of a similar experience. I can't wait until I feel good enough to actually work out, I can't wait to see what this "new me" can do!

2

Look up " Empty Cella Syndrome" I was told that when your pituitary gland appears “flat” or “empty” that is what it is. I also have chiari and also empty cella. No one knows much about it, and there isnt much on the web. But at least you would have a text book definition. It, in turn, is prob because of the chiari. No real way to prove. But I think it has a lot to do with some " symptoms. Good luck.

3

Hey there,

Ok may be going way off here. My daughter has been diagnoised with Chiari recently and now that she has been diagnoised I am going to make an appt. with my dr. to have myself checked. I also have many symtoms the same as she does , tingling in hands, legs, feet. Horrible pain at base of my skull feels like I can move fluid when I suffer from migraine's or headaches, noises and loud music drive me nuts, loss of energy, and weekness in my arms/legs, can't sleep on my back because of the pain in my top of my neck, and it's funny that you talk about the weight thing. I go to the gym 4-5 days a week and eat very healthy and am the same as you cannot loose any weight or I loose 2 or 3 pounds and then gain them back then loose them and gain them back without changing a thing. I will keep you updated if I do find out I also have chiari and maybe it is related some how. Never had a problem with weight or any of these symptoms before kids, but my tailbone was broken when delivering one child and symptoms seem to start then and worse again after a spinal tap for menegitis that I didnt have not sure if that's a coincidence or not?

Brooke's mom

4

I can no longer workout at all !! It has broken my heart. I have never heard of any Chiarians or research that has linked obesity & Chiari, but I will check into this. I know a Chiari researcher & will call him tomorrow. Great Post....Thanks !!

Tracy Z.

5

I am going to research some of these things, thanks! I also want to mention I am on topamax (going on a year, 100mg for the last 3 month (2x/day), 50mg before that(1x/day) which is notorious for major weightloss side effects, which I have experienced a 1 or 2lb loss at most - where the majority of people experience much more especially when reaching the 100mg dosage, and I experienced no weightloss. I also have to wonder if now that I am decompressed if the medicine is working differently and causing the weightloss?

I'm not going to go too crazy over finding out the reason because I am happy about it and I don't want to get stressed and cause more problems ;) I will definitely keep you informed!

6

I, too, have tried everything under the sun to lose weight. I've been overweight since puberty, but I was always healthy (except for constant headaches). The older I got, the more weight I put on, no matter how much I worked out or what I ate. I was also on topamax with ZERO weight loss. Funny thing - last week my doctor put me on a water pill because my swelling was so bad I was getting stretch marks on my ankles. From last week's appointment to this week's appointment, I've lost TWENTY pounds of water weight. Other than that, not a damn thing has worked for me.

7

I believe there is an issues in weight in regards to weak muscles. I am not overweight, but I do have more fat on my body. My muscles are weaker than normal due to the chiari and that might contribute to weight issues. Hope this did help out! And you find answers.

8

I, too would love to know if there is a link. It would make complete sense that without proper pituitary function our hormones would be out of wack. I put on 63 pounds in three months when I was 22 and the nightmare began for me. My doctor told me I was overweight because my parents are overweight despite being active and in college and not changing what I ate prior to that three months. I did not find out until I was 28 that I had Chiari and Empty Cella Syndrome. I had decompression last year do to unbearable symptoms and the NL fear of paralyzation. I developed a giant pseudomeningocele and had a surgery to repair the leak with lumbar drain almost 2 months later. I lost 15 lbs right away and I was happy but then I had the second surgery and found out that I had Meningitis from the leak. My thyroid went into hyperthyroid after over10 years of being hypothyroid and I was losing hair and the weight loss stopped and I slowly gained the weight back. It has been so frustrating. Before my wedding I was doing 90 minutes of cardio daily and following the celebrity fat smash plan and I only lost 9 lbs. I gave up on the plan after 2 and a half months and shortly after my wedding I put 20lbs. back on in 6 weeks and had gallbladder surgery :( It is frustrating to say the very least and it seems to be a logical connection but I don't understand why it hasn't been made or researched :( I am going back to TCI in a few weeks and will discuss this again with the drs. there. If I get any helpful information I will pass it on. Hang in there :)

9

Hey Everyone. I started getting symptoms when I was 18-mostly pain and numbness type stuff. When I was 25, I put on 60 lbs in on year, with no major changes. Then over the next few years, I would pack on even more to get to be 338 at my heaviest. I was mortified. I thought I was trying everything I could do to lose the weight, but I was actually doing the opposite of what I needed to do! I started researching inflammation and realize I was completely out of control. So, I took out ALL SUGAR, FLOUR, WHEAT, CHEMICALS, MSG, TRANS FATS, etc and the weight fell off of me. I have lost over 100 lbs, but it has taken a looooonggg time. I attribute this to chiari, because my daughter did the same thing I did and lost all of her weight quickly (80 lbs). So, there is hope. It sounds extreme, but it can be done and believe me, now that I am feeding my body, I feel so much better. You won't miss it because it will start to look like poison to you. I was barely diagnosed with my chiari last year. I had years of doctors saying I was crazy, depressed, hypochondriac, etc. They were wrong. I knew there was something wrong and there was. Believe in yourselves and you can do anything you want! But yes, I really believe there is a chiari/obesity connection. I wish they could give us more answers!

10

Very interesting conversation going on here. I had my decompression back in 2010 and have recovered back to 100% but my weight. I have gained almost 60 lbs since then and no matter what I do I can't seem to drop anything. I just joined weight watchers and was thinking about starting P90X very slowly. The nutty part for me is I'm ADHA and was on Adderall for almost 2 years. I think I'm the only person who is on that who gained weight. I should say I'm very careful with working out because I still have a few fluid packs in the spine that can't be drained. The slightest wrong move and i could be in trouble from what I've been told.

11

That is awful:( I swim a lot. It seems to be the only way I can get consistent exercise (cardio) besides weight lifting.

12

I also gained lots of weight at the time that my symptoms started. I had also just started taking an antidepressant which could have caused the rapid weight gain as well. I was given the antidepressants because they thought my symptoms were due to depression. Sadly my depression was due to my symptoms. I will never know for sure if the pressure in my head caused the weight gain, but I wouldnt be surprised if it was related since the weight gain was so rapid and I hadnt changed any of my habits. 5 years ago I adopted a mostly raw food diet- very pure and clean, no gluten and almost vegan. I lost 60 pounds in about 5 months. I believe that without my careful eating habits, I would be in worse shape.

13

So many interesting stories! I looked up empty sella syndrome but my pituitary on my mri’s aren’t like the ones on the mri’s online…mine is shaped like a bean I was told by that first surgeon it should be oval and ESS means it is or almost is flat.

I also looked up cushings but that sounds way off for me too. Maybe I’ll do some research on endocrine disorders. I’m mostly just curious about the topic! I love my body no matter what size :wink: but I’ll take a loss! I’ll be counting some calories and upping my activity too though cuz when I start to see the scale go down it motivates me to make it go down more! …and I do miss the old me!

14

I had decompression surgery 1/25/12. I, too, effortlessly shed 15 pounds within 2 months. It was like a God-send because I had tried everything out there to lose weight and nothing worked… I think you may be on to something :slight_smile:

15

This is an amazing conversation piece because I have wondered the same thing. I was diagnosed with Chiar/syrinx in 2009 and had decompression surgery too. I gained 100 pounds in 3 years. I've lost my balance for walking (I was walking 2 miles a day prior to diagnosis), I still fall alot, I get dizzy spells, I have to hold things to walk: cane, grocery cart, walls, etc,. I found that swimming is great way for my exercise, but I have no pool or access to one. But, I eat less then I did before my surgery and still can't lose the weight, and wondered a long time if it was due to the Chiari or the surgery and after. I need to research too, I have to have a knee replacement surgery due to falling so much, so that would make me immobile once again until I can walk again. I wish everyone well, and let's continue to find information and keep posting for everyone to know what they find out. God bless, Antoinette

16

Brooke's Mom : I think you said something very important : Your tailbone broke during childbirth. We all appreciate how our big, awful symptoms are coming from the upper neck/lower skull. However the osteopaths and chiropractic specialists ( craniosacral/sacro-occipital) appreciate that the skull and neck are very much affected by what is happening with the sacrum, tailbone, and pelvis. How does spinal fluid get from the sacral ( bulb) back up to the brain ?? These specialists have studied this problem for 80 years. "The first pump is located in the skull at the source of the supply ( of spinal fluid), the second pump is located at the juncture of the skull ( occiput) and the neck, and the third pump is located at the pelvis ( sacrum)." The occiput bone ( base of the skull) and the sacrum are the anchor points for the dura, which lines the entire central nervous system and holds the spinal fluid, brain, spinal cord. Neurosurgeons at the Univ. of Alabama published research that they found that 11% of 'normal' cadavers had a dura fused off midline in the sacrum ! Does this disrupt the normal symmetry of the spinal tube/column ? I have always felt as if I have a torque, or twist, in the dura from the sacrum to the upper neck/skull, as certain adjustments/changes in my pelvis cause a certain pattern of changes in my neck/lower skull with resulting symptoms. Perhaps there is a relationship between scoliosis (a twist in the bony spine) and a twist in the dura ?? The point of all of this : I think that to understand what is happening at the skull base we must understand the entire system, from the sacrum to the entire skull/jaw.

Also, the sacro-occipital chiro specialists say this about the pituitary gland: There is minute interbone movement between the occiput/sphenoid bone which houses the pituitary. This is thought to be important for pituitary hormone secretions. A TMJ problem will ultimately affect the position of the sphenoid bone, and the sella turcica - the little pocket in the sphenoid where the pituitary sits. Thus abnormal movement of the sacrum, occiput, TMJ joint, sphenoid bone can all affect pituitary function.

As I look at my own body I realize that I am quite asymmetric : one leg shorter, left hip higher, scoliosis, one shoulder dropped, one side of my face ( one eye) smaller, one ear lower, nose deviates to one side ( deviated septum), one cheek higher, when I open my mouth slowly, the jaw deviates from the center. My brain MRI clearly shows that my left cerebellum is much higher and smaller than the right.

A good read: The Downside of Upright Posture by Michael Flanagan, D. C. He is a neurologic chiropractor - with special interest/training in skull evolution, structure, spinal fluid flow, etc.

I wish there was a simple answer. For me, keeping my pelvis/sacrum as stable as possible helps a lot.

17

I also gained a lot of weight when my symptoms started. When I gained the weight, there was no change in my eating habits or anything. I worked a very physical job and was walking across campus daily and still somehow managed to gain about 40 pounds in only about 2 months. I have tried everything to get it off and it doesn't matter what I do, it will not come off. I was decompressed on July 20th and am hoping that I will be able to lose the weight and get back to what I was before all of this started.

18

Great topic. I'm not fat. I'm 3 1/2 mo po. from decompression. 117lbs. Mostly because I have trouble eating because of my droop and weak facial mussels. Also causes swallowing issues.But when I was working befor I was diagnosed in 2011. I also have AA Diagnosed at the same time. I had a fluid leak as a child 12 to 18 with reacuring spinal meningitis. Hospialized and lumbar punchered over 200 times. This is what caused the unseen desiease Arachnoiditis. I had a lumbar surgery in 2008 that set it all off.Because of blood in the dura it turned to adhisive Arachnoiditis. The central nerves in my L-4-5 areas nerves have fused to the wall of my spinal cord. There were a couple times I got heavy 146. Couldnt shake it 2yrs. Then BAM!!! 30 lbs gone in 30 days. 2 to 3 lbs a day with no effort at all. I had a friend ask me why I swell all up then it gose away. My surgin looked at the pitulitary glad but nothing. Because of hot cold temp controll.When I had my Chiari 1 operation this hot cold lasted all 4 days I was in there. Exercise starving for months nothing took it off. I weigh 117 now. I lost all my mussel. But I have been there more than once. I have weighed 120 so far. But I'm at the beginning of Mentapause I think ??? I'm 48 I should be. So this causes a 5lb weight gain every mo. God bless you in your journey and you find the answers you seak. Blessings and prayers

19

I did a lot of research on unexplained weight LOSS since I've lost over 90 lbs. in 3 years and am still losing and nobody can figure out why. All I found was that the bowels can be affected by Chiari, but that really doesn't help either of us much. Since it's my nderstanding that Chiari and affect all autonomic systems, maybe there is some association, but I suspect that there are other things going on for both of us. I wish you all the best as you recover and are able to start working out again!

Florence

20

There can be other congenital type issues associated with the Chiari/tethered cord complex. Please read about about malrotation of the intestines/redundant colon/cecum hypermobility/internal hernias. I spoke with one Chiari person whose sister ( this sister did not have a Chiari) had a malrotation and blockage of the intestines - was corrected with surgery. Also, you may want to read about chromosome 22q11.2 deletions, or DiGeorge syndrome. A geneticist thought I should have these genetic studies, but I could not afford the thousands of $$$. I hope your doctor can help you with this. It is very strange how we have so many health issues, but also wonderful 'gifts' in ourselves and families.