im really nervous &need some pointers

[hannnnnah]

I'm a teenager and I just found out through a sleep-study that it appears I have Chiari Malformation 1. Im at what you could say is a peak point in my life and this makes me really scared and nervous for the outcome. I do not have any symptoms really but my mom said they could be related to the Lyme Disease that I have. From anyone that has had the surgery or has a lot of information on this, what would you say the estimated recovery time is or an average one maybe? I know it really is different for everyone but maybe that would ease my worries a little.. Im a regular teen with lots of friends and I love going out and doing things with all of them and I want to get right back to that as soon as possible. Also, this would be my first surgery ever and its BRIAN SURGERY. That is definitely a doozy for my first surgery or one in general, in my opinion. Any pointers or advice on anything to help me through this? :)

[linnielou232]

Your just heard from the two most informed people I know on here.  I know they helped me through my journey through all this too.  I have to say just hearing the word Chairi Malformation for the 1st time is scary in itself, but reading all the information you can and getting the right Dr. is the key.  I went to 4 Surgeon in all before we made the decision to have surgery, so you don't go into this lighting.  Please just get more informed and you will find the answers.  One thing that my Dr. asked me was "Are you living the life you want to live"?  If not then surgery is in the question cards.  If not just start doing small changes just as not lifting heavy items, bending is not good, I personally wear ear plugs due to the irritation of noise.  Just please take to heart from the two above because they do have good wisdom and will put your worries to rest.  I wish you the best on this journey, but do know now you have a Chiari family that will help you through this.  Best wishes.
Linda :)

[selmaS]

  Hi and welcome to the Chiari forum.

I have to agree with CW on this...why is surgery being considered if you do not have symptoms? What testing was done so far other then the MRI that discovered your Chiari? and why was it done?

Not a medical professional here either....BUT, I have spent 8 yrs or a little more looking into not only this condition but related conditions and when to have or not have surgery....the only reason you mentioned is having Chiari...and that is not a reason to have surgery....surgery is done to help restore CSF flow and slow progression of a syrinx if you in fact have one.....

Surgery can be helpful, but it can also leave you in worse shape if ALL related conditions are not found B4 surgery and precautions taken.

Having the right Dr is also KEY !!  We not only research Chiari and related conditions but the Drs we see....

We are ALL different and how long it takes for someone to recover from this surgery will be different for each one of us.....typically it my be a few weeks for the incision to heal...but the nerves inside can take up to 2 yrs or better....and that can include symptoms that continue....surgery may not get rid of symptoms and for someone that does not have any....may end up with some post op.

I would say more testing is needed and research....with a congenital condition many times we are not aware of our symptoms....and think we do not have any...but once we learn more what are "normal" or can be symptoms we realize what we consider "normal" may not be "normal" and could actually be a symptom.

[ChiariWolf]

Firstly, I'm not a doctor... but what you are saying here screams to me why are we thinking about surgery at this point? If you truly do not have symptoms from the Chiari then surgery shouldn't even be a thought in your mind at this point. The only real purpose in a surgery is to help restore the flow of CSF and help alleviate the more severe symptoms of Chiari.

That said.... life is truly what we make of it. The hand we are dealt is the hand we must play in this wicked old world. To allow ourselves any other train of thought is self-defeating and a very long destructive path in life. So I do hope that your writing here is to educate yourself, not out of fear. Fear is normal, but fight it with everything you have. Replace it with wisdom - Wisdom isn't what many refer to it as... it is however taking in knowledge and then putting into action.

So, welcome to the list, I hope that you learn enough to calm those nerves. But remember, just as each fingerprint on your own hand is different so is the life and symptoms of each person you will meet here. Because one suffers or succeeds doesn't mean you will experience the same. Just try to draw from the knowledge as you will find more of that then you will talking to 99.99999% of the doctors out there. Kind of like trying know you as a person, if one wants to do that then they must talk to you not others like you. The wonderful folks here 'know' what Chiari is like and either have learned to deal with it or are in the process as you are.

So no worries your life is NOT over by any means with this diagnosis. Just different. With no symptoms the only real difference is the need to draw the knowledge of things you may want to avoid in life to be safe. But from what I have found many with Chiari live most of their life without ever knowing it's there. It is a deformation of the skull. The results of that deformation can vary but only the more severe cases will find out that the condition exists because of symptoms.

I do hope all that jibberish makes you feel a bit better and calms your mind.

ChiariWolf