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Avatar universal

Cold weather

Ive had a chiari malformation of 3mm as far as I know for over 12 years. I have seen various chiari specialists (ellenbogen, Di). I've been told by them both that surgery is not an option right now although I have some pretty horrendous symptoms. Dizziness, brain fog, parastesia, muscle pain, join pain, fibro pain, blurred vision...

My question is this...do any of you notice that cold weather causes a ' worsening' of symptoms? I ask this because over 12 years I have noticed in November I feel horrible after a pretty solid June - sept. in fact sometimes over the summer I forget I have this dreadful condition. Living in seattle our weather changes drastically during the winter but I didn't know if anyone else has experienced this. Of course the barometric changes due worsen our symptoms but how about just the fall/winter season in general

Thanks for your input

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620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

Most deff the weather and season changes play a large role in how we feel.
I have often said I felt like a walking barometer.... The colder weather causes me more pain then summer ...so like u it is more noticeable, yet I have had surgery already....

Is Dr Ellenbogen monitoring u? Not all with chiari are surgical candidates and we do have to learn our limitations.

  Hope this was helpful

   "selma"
Helpful - 0
1179332 tn?1297478990
Hello

I agree with you...I am the same way..in the summer I suffer a lot less with my symptoms. However, in my case I am not sure if it's due to the weather or the fact that life is quite relaxed in the summer and then picks up to a crazy pace come September. My body sort of goes into shock when it goes from having relaxed days to the constant go..go..go
I'm not sure if that is true in your life or not...as for the cold weather...I know when I am in the cold all my joints stiffen and ache so I'm sure it is a factor as well.
Another factor in Nov. is lack of sunshine which brings down the Vitamin D count and frankly, causes me to feel a little depressed...which does not help the pain. Have you tried taking Vit D supplements?

Stormy
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Avatar universal
Thx for the help...yes when weather changes my dizziness and nausea become much worse. Felt nauseous the last week...hate that! Also i
Disequilibrium and brain fog at an all time worse...my 12 years are filled with couple months feeling good followed by a couple bad...so unpredictable

Any supplement you might recommend?

Dr ellenbogen is sort of following my chiari...although he is an expert he is thoroughly convinced that unless you have a 7mm or more herniation decompression is unproven. He said all of the studies done for the most part reveal results from those with a 7 mm or worse. He even added a disclaimer that he would be VERY VERY careful proceeding with surgery unless my MRI changes. He said he was doubtful surgery would improve me...any thoughts???
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  Hi...it is true many go and have surgery bcuz of HA's and end up worse then b4 surgery...this is a major surgery and has risks.

And unless the benefits out weight the risks most chiari specialists will not do the surgery either.

  Do u have a NL  u could go to for further testing to see what else u might have going on?.....once u r dx'd with something u may be able to treat that and feel better.

  There are things u can do to try to feel better.....

U r not alone in how u feel, I felt just like u described for most of my life...and it was not until I had a drop attack that caused  other injuries that I got my chiari dx....

  I am better, but still not "normal" and I will always have issues as a result....

  Chiari is life altering.


Helpful - 0
Avatar universal
I think I am diagnosed with chiari...although my GP thinks it might be fibro. Yet the more I read online it seems many are misdiagnosed with fibro. I've had a vast array of MRIs over 12 years - full spine, brain (multiple times). I have very good docs. Selma, do you think dr ellenbogen is saying I don't have chiari or do you think he's saying I do have chiari but surgery will not help. I thought the latter
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620923 tn?1452915648
COMMUNITY LEADER

  Well I am only going on what u said was  mentioned so I can only go by that and I would say u just r not a candidate at this time. Not everyone is or will be....

To find out for sure, point black ask the dr.

I am sure if my chiari was dx'd yrs ago, I would have been told the same, but when I was finally dx'd it had progressed to the point I needed the surgery.

  Did u have a CINE MRI?


   "selma"
    
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Avatar universal
Yes had cine MRI - it read slight attuation but ellenbogen said it was relatively normal
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  May I ask, when was ur last MRI?
Helpful - 0
Avatar universal
Cine and brain 9 months ago - full spine 2 years ago... How often should I get an MRI in your opinion?
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  If u have no change in symptoms, at least once a yr...it all depends on the NS if the MRI is more then 6 months  they may have u get a new one to compare...if this is a new NS u r seeing...that is what mine wanted neway.

But nechange to symptoms , if the MRI is more then 6 months u should get another one.

  
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Avatar universal
I will see my pcp Monday...he should give me an MRI...he always has in the past - I will ask for the cine and brain MRI

Thanks Selma
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Avatar universal
I was diagnosed with Type II Chiari Malformation in ~2005.  About a year and a half ago, I found out with testing that I was Gluten Sensitive through enterolab.  I mention that because most of symtoms with Chiari have went into a kind of hibernation essentially since I've been on a gluten free diet.  Occasionally I do feel some slight pinching in the top center of my head, and If I really over do it, and work out in the heat during the summertime or something like that , I might experience a pressure headache.  

My point is, that I really believe now that because my body was reacting to the gluten with an autoimmune response, that caused more swelling in my head which triggered my Chiari symptoms to ocurr more frequently.  This is just from my own personal experience, and theory.  So, because I was able to eliminate the gluten which was causing an autoimmune response in my body all of the time, until it's eliminated, I now feel almost symptom free from my Chiari.  
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1903798 tn?1333905288
Cold weather made it much worse for me because it tightened everything up.  
Helpful - 0
Avatar universal
I have what is called a chiari zero malformation. There is no herniation of the tonsils at all. Surgery has been proven to help with this condition and many chiari experts now agree that the degree of tonsilar herniation has nothing to do with the severety of symptoms. Someone like me can have worse symptoms than someone with a large degree of herniation. I am scheduled for surgery this month. You might want to find another doctor to discuss this with. Many are still not familiar with this relatively new diagnosis. I was lucky enough to find a neuroradiologist who knew about it and referred me to the right neurosurgeon.
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

Yes, I am aware of the Chiari 0 DX and that it is not the length of herniation but the width and if there is a CSF obstruction.A herniation that is 13 mm but thin can still allow fluid to flow, almost like a shoestring licorice would in a funnel but plop a gumdrop in it and it corks it up....

  The problem is too many Drs use the herniation to classify and DX Chiari when Chiari is the malformation of the skull not the herniation, that results as a result of the skull being too small and the cerebral tonsils are forced out.

I am glad u found a surgeon to help u, and if u like u can post ur surgery date in the surgery date thread and a prayer thread will be posted for u.

Also look at our list of Drs to see if ur Dr is on it as we like to add names in areas we may not have one for....http://www.medhelp.org/health_pages/list?cid=186
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Avatar universal
See I feel the complete opposite when it's cold outside I have very minimal pain or as noticibal symptoms it's when things begin to warm up when things begin to change and I become more miserable
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

When did you get your Chiari DX? And did they rule out Syringomyelia ? If you have a syrinx it can affect temp control for your body and since we are all different it is possible to have one temp bother you more so then others. POTS is another related condition and those with it can not tolerate the heat well at all....I would suggest finding out what all is going on with you to know exactly what the best way to deal with the warmer temps.
Helpful - 0
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