Newly diagnosed with Chiari I

[2GApeachy]

I just got a diagnosis.  When the doctor told me, I was so nonchalant; however, having done more research, this is rather serious, right?  I have seen Chiari support groups, etc., so that got me rather scared.  Also, I was reading some of the posts that said that their cerebellar tonsils extended 8 or 10 mm into the foramen magnum.  Well, mine says that it's 1 cm.  How bad is this?  What should I expect?  

[Ksand]

Thank you :) ill be taking my mom and a list of questions with us to my next appt. ill be finding out the results of the tumor tests as well. After that, I will be getting a second opinion on everything. Thanks for your help, keep you posted!

[selmaS]

U deff r not alone....and not crazy either !

A urodynamics test can help see what issue is going on with ur bladder, I had one and now know I have a nerutogenic bladder as a result of tethered cord.

Also since being decompressed I do not have the same issues like UTI's have decreased dramatically.U may want to see a urologist and ask about testing to see y u r having these issues.....it may be linked to Chiari, but it may not so it is always best to report all symptoms to ur Dr and seek out Drs that can test to see what is going on.

[Ksand]

Yes, I do have bladders. I use to think I was getting UTIs but then it would go away. This feeling keeps happening (and going away).  I know the location of the tumor or my nerve damage could also be causing these things but its very hard to sit back and just wait and suffer. I no longer go to work because of the cognitive and fatigue symptoms that have become unbearable. The more I move the worse the pain gets, and doing nothing while I wait for the results of my tumor and chiari surgery just kills me. I will take a look at that site. Feels better just knowing I'm not alone and not going crazy. :)

[selmaS]

  Yup, I do have issues like that my Dr said it was due to having a neurogenic bladder....do u have ne bladder issues u r aware of?

If I have to evacuate my bladder, but have to wait, I get very hot....to the point of sweating....I do not always wake up until I am all perspired....
It is possible for symptoms to flare and to increase...it can be rapid or slowly...since Chiari symptoms cycle it is possible for this to happen as u said.

Keep a journal and see what triggers ur symptoms...u may have certain activities that affect u that may not have affected me....the best advise is listen to ur body....

Take a look at the list on the Health Pages....

Just recently I have reduced the amount of fatigue I suffer from,.much of it can be from pain, the rest for me was I had IBS and other issues, with the RX of probiotics and magnesium and Vit D, and the addition of a antihistamine b4 bed,  I am feeling better on that as well as sleeping better too.

[Ksand]

Also has anyone ever had a cycled sweating symptom? About 6 months ago, for about one week, I would wake up in the middle of the night almost soaking wet, for absolutely no reason. I'd go to bed cold enough to warrant a blanket and I'd either wake up completely wet and remove all clothing or I would kind of wake up as I was removing my clothing. Either way this sweating was extreme and one of the few I actually mentioned to my mother. But then, per usual, it of course went away. Once again leaving me feeling crazy. I also feel like my symptoms utterly debilitate me in warm weather. New symptoms keep appearing and old ones just keep getting worse, I feel like something is progressing and it's happening quickly. Is this even possible? If so am I doing something to potentially worsen it? Obviously I know to "avoid head or neck trauma"...as if anyone actively seeks it out :/ until I find a new surgeon I don't know what to do...sit idly by and suffer? Hoping for some temporary relief tricks aside from ibuprofen, especially to counter the extreme fatigue and mental hell i feel like im in :(

[selmaS]

  So is the surgery they r suggesting for the tumor or the Chiari?

Well the symptoms coming and going is typical for Chiari, they cycle....

So many with Chiari can relate to ur distrust and dislike of Drs....it can get very over whelming....but to take it a day at a time and educate urself so u know u have the right Dr for u.

What reasons did ur Dr give for suggesting surgery, this may indicate his experience of lack there of...

I saw a few diff Drs and the ones I went to for the surgery tested me for ALL related conditions as well as ruled out others with similar symptoms.

They explained y testing was being done and showed me on my MRI y I needed surgery.

We r all diff as to how we r affected  one bcuz we r diff and 2 bcuz some of us also do have other conditions as well as chiari...so we can not look to see if our symptoms match....but it is how it affects ur overall health.

Some with sleep disturbances should be tested for sleep apnea...and IMHO we all should rule out EDS b4 we consider surgery as it can affect how we feel and heal post op.

There are certain activities we should avoid, see the list in the Health Pages....

Can u list some of ur symptoms, even if u feel they may not be from Chiari list them, u never know.