Losing weight related to chiari or syrinx?

[jenniferk86]

I am happy I am losing weight... Cause I want to.. but I am not trying and normally it very difficult for me to.  I have been very nauseated and lost 20 lbs this month.  Could this be related to chiari? I swear I just feel worse and worse every day.. and I read that chiari doesn't usually progress that much... and I feel more dizzy my visions feels worse and more blurry, I feel like its starting to distort.. its getting harder to swallow I am getting more numbness... I didn't have a syrinx in March when I had an MRI... is any of this symptoms of a syrinx? is it even possible to get one that fast?

[jenniferk86]

Thanks Selma... It is just unsettling knowing that she could have been helped if the doctors would have listened more and done the right tests... I think we know when our bodies are not right and sometimes the doctors just deem us crazy.  

Before last April 2010... I was completely fine.  I had headaches growing up sure, since I was like 10, but nothing unbearable, just quite a few, and I thought everyone had them.  I had a few episodes where I went to the doctor because I thought I was suffering from migranes and took immatrex, but it didn't help and I just stopped going to the doctor because I never went to the doctor and I hated going to the doctor.  I was a 4 sport letterman in highschool.  I was a powerlifter, can you believe it??! a chiarian that powerlifted?  I played tennis at the state level and also did varsity volleyball and state diving and swimming!.  I was very athletic and energetic.

Then I had my son who is now 3.  I had a 2 hour labor starting with my first contraction, crazy! I was going to try a natural child birth with no pain medication and was doing well for the first hour and a half.. then I hit a wall I decided there was no way in heck I was going to be able to bear that kind of pain for 8 more hours( that was what I thought, if only I had known it would only be 20 more min and this was the crowning and bad part)I would have just dealt with it because the pain of the epidural with a continuous contraction that never gave me relief and had to be turned off because as soon as it was inserted I was checked when I said I needed to push and was at 10cm! and I had my son in 2 pushes delivered by the nurse because apparently 1st time moms take an hour to push their babies out... and my "practice push" pushed my son half way out...lol

So then a year and a half went by and still no symptoms, and I had my daughter emma all natural because I knew better this time... a 5 hour labor..who is now 18 months and then 4 months after I had her all of this started... I had an unexplained seizure.. which still nobody knows why... and I had and still have extreme fatigue so bad that I sleep 12 hours and I can hardly drive to work without feeling like I will fall asleep.  So I started going to the Dr.... blood test after blood test going to the dr. every two weeks each time the blood tests came back normal.  Started trying experimental things, all my iron levels and b-12's normal because I always ate healthy...

Found out along the way I had factor 5 leiden and protein s deficiency which just means I have a higher chance of developing blood clots.. and now that makes me paranoid and unable to take birth control... which I have always taken to help me with my awful, painful heavy periods... and now have no way to control those... but then nothing else... finally checked thyroid after gaining weight... a little hypo but not much... everything else normal.

I did so much research I should be a doctor or nurse myself.. probably Selma you can relate... I was bringing in disorders and things to test for to my doctor 2 times per month to check for and even created a spreadsheet with all of my symptoms under each category and things we had tested for and the results and everything.  I spent a lot of time trying to figure out why I was soo tired and then I started getting severe pain in my hips and chest pain and headaches and had gone to the er several times ...

I was just getting worse and worse and starting to get paranoid that they would never find anything wrong and the dr's were telling me it was depression and maybe fibromyalgia... and depression and stress.... and I keep telling them... I am sure that stress and depression doesnt help, but I lost my mom and brother  in a car accident 7 years ago..then a year later I lost my dad that got hit by a car I was depressed back then and didnt feel like this... I had babies naturally and this pain is worse... this is NOT DEPRESSION!!!!!  So i insisted and still not much...

Then I started getting neurological symptoms... blurry vision and tingling and numbness... that got my doctors attention.. that usually isnt caused by depression... so I finally got an mri to rule out MS when my vision test came back normal... and guess what ? Chiari!

So.... I was very very very persisitant and finally got a diagnosis and everyone in my family including my ex /baby daddy... acted like I was faking it and making things up to make people feel sorry for me or to get out of things.. and very frustrating... and I have this experience with my friend who dealt with a similar experience and it scares me... I just say advocate for yourself when you know something is wrong.

[selmaS]

My gag reflex has been on and off.....post op it was off...butI was unaware of it till we were talking about it on here...lol...I checked and sure enuff...none....but I know I had it at some point b4 as I did gag taking pills....but, I thought I was getting better at taking them, never realizing I lost the reflex.....so, I am not really sure when  I lost it...lol....


  OMG my sympathies for ur loss Jen....it is scary to have something like that happen and then when u see something similar happening to urself it is very scary.....

    

[jenniferk86]

yeah... I don't every gag... I always wondered why, like literally to the point where I think I threw up 5 times in my entire life and I cannot make myself throw up.  sorry if this is tmi, but it doesnt even sound like I am throwing up when I do, it just sounds like someone is dumping water into the toilet because I literally have no gag reflex.. now I know that is due to chiari.. what ***** about that is when I am very very nauseated... I suffer because I cannot eliminate what is making me that way... I should just count my blessing and shut up and be thankful for the weight loss because I was so scared when I gained all this weight and couldn't control it, and now im complaining when Im losing ... God is probably up there saying dang girl can't you be satisfied? lol.... I guess I just am a little worried still because I had a friend who died from cancer after 2 years of not knowing what she had going through kind of the same process, blood work and doctors couldnt figure it out telling her she was fine, then started losing weight unexplained and then when it got bad enough they finally found it but it was too late.. rare bone metastatic cancer or something.. I don't remember it was a long time ago and it wasn't a really close friend.. but since then I always worry.... So that is why I got a diagnosis in a year when it takes most people several with Chiari....

[selmaS]

  well over the yrs I was on a roller coaster of diff weights...I was skinny at one point and then a few months later  I was fat...no change in diet or activity....so, again unless it is the brain stem compression and the body is just not processing food properly....I am not sure....certain switches get switched and  who knows for how long and what it is affecting......

  I will say this, my weight leveled off...and I am  now losing weight..again slowly this time, but again no change to diet or activity....this chiari is very weird.

[Samanthab259]

I had the problem with nausea & gagging all the time. My pcp gave me meclizine it has helped alot.

[jenniferk86]

I do have hypothyroidism.. but I have been tested for antibodies and have been told I don't have hashis.... I take levothyroxine.. but not a very high dose... I am pretty sure its because I am so sick to my stomach and nauseated I haven't been able to eat much at all.  I had a period where I was only eating 500 calories a day and still gaining 1 lb a day and gained 30 lbs in 3 months and then found out I had hypothyroidism... I dont feel like I have a goiter...and I just got my numbers checked all fine... so I think my thyroid is in check.. thats why I am wondering if it is chiari.. but I am wondering if it is something else... maybe it is GI.. I had a colonoscopy about 6 months ago... what other tests would I do? Maybe I should just wait until I am as skinny as I want to be and then tell my doctor lol... I have never been skinny..lol

[selmaS]

  Hi...it can be related in a sense...chiari can  and does compress the brain stem which is our control center...if that malfunctions so do other body functions...like motility in digestion and absorption of food...so do see a GI dr....this can also be related to a thyroid issue...such as hashimotos which can switch back and forth btwn be hyper and hypo....

Even the swallowing issues can be traced back to chiari.....

A syrinx is often a very slow progressing condition, but a few have been told that about chiari and had major changes in short time spans...we r all diff so who knows if u had a trigger of some sort...do get checked.

Again this could be  thyroid so do ask about a thyroid ultra sound...nodules can affect swallowing as well.

   "selma"