surgery

[phardin]

Hi , I'm  new here. Juat wondering  how many people haven't had surgery and don't want to. Anyone live a pretty normal  life without surgery?

[selmaS]

  Yeah, it is scary that there are Drs out there that give advice that can not be a general rule for all....and things we should avoid....

It can always be worse....and we are happy that it is not.....and we take one day at a time....it's all we can do.

That and find a true Chiari specialist to help guide us to the right treatment for us.

[phardin]

Able. Did all the test and saw a NS.  Haven't seen a specialist yet but i will be sending in my mris. The ringing started about 3 months ago. I'm getting use to it now. My shoulder  started feeling weak years ago but thought it was an injury from weightlifting.  I just don't  want this condition to run me. IDK, it just stinks.

[phardin]

My whole life I have frlt different.  Never had super bad headaches but was always nauseated as a child. I'm smart but seems to take me longer to grasp it. My first bothersome symptom was tingling in my face and tongue. That started at the beginning of the year. Blood work showed anemia,  low vitamin d , low b12. Then she ordered an MRI. Mri revealed  borderline cerebral tonsiliar etopia 4.4 mm . Docs said Everything was normal. I then questioned the sbove saying that doesn't sound normal. So I was referred to a Neurologist who SUCKED ! teally liked my 2nd one. Some what knowledge

[lasel22]

I've had ringing in my right ear for 10 years or so and mild sensorineural hearing loss and doctors couldn't really explain it.  Now I have some ringing in my left ear too when I become more active.  Thinking back I think the ringing was one of my first symptoms.  I was able to be active for quite a while before my symptoms worsened.  I worked out 5 days a week and was a runner.  When my symptoms worsened I could no longer be active without the symptoms getting much worse.  Before I knew I had a chiari I found when running I would start to loose feeling in my feet as I ran, then when I slowed to a walk and my heart rate when down I would feel my feet better.  My vision would also be jumpy when my heart rate when up.  I didn't understand what was happening but I continued to run until one day I had vertigo for a few days after running one day.  That started the long journey of discovering the chiari.

For me now, I can't do anything active, not even yoga with getting dizziness, vertigo, and headaches.  So activity can worsen symptoms.  Although, like you I had ringing in my ears and a feeling of fullness and led a very active life for 10 years before debilitating symptoms started.  Who knows if my activity level had anything to do with the symptoms coming on.  At least I was in good physical shape when it did start.  I think it helped to be in good shape before becoming bedridden for weeks at a time while going from doctor to doctor trying to figure out what was happening.

If working out reduces stress levels for you it might be good.  I do think stress can trigger symptoms.  At least you know you have a chiari and if you start to feel badly after working out, you'll know why.

[phardin]

I'm  glad you  seem to be doing good. It's sad but comforting to know you're not alone.  I try to look at this as everyone  has something  and it could be worse.

[phardin]

:(  Was afraid of that. I did  hit the gym today though.  Did the eliptical and bike. Some walking lundges and a few curls.  When i started feeling nauseated I slowed down. Guess I will see tomorrow. . Yikes.   My neurosurgeon and neurologist said I'm  not a canidate for surgery and that i can do whatever I like. But fro. Reading other post their advice is scary.

[selmaS]

  My Drs told me the more we get our heart rate up, the faster all fluids need to flow thru the body, blood and CSF.....and bcuz the area in the posterior fossa is restricted due to it being smaller this is what causes our symptoms to flare and worsen....so we are advised not to strain....

Running is also something I would avoid due to how it made me feel....and knowing it will make your heart rate climb....

It took some time for me to get back to some things I missed....and am now able to do again....no I do not run...or do cardio or lift...lol...never did...just was not who I was.....but , I still had to change a lot of my life, but it slowly is coming back.....well worth waiting then forcing the issue and possibly causing a set back or the symptoms to flare.....

[phardin]

Do you think it's  okay to run and do cardio? I miss it so much!  I know lifting to heavy is a bad idea.

[selmaS]

  No need to apologize and that is why this forum is here....say what you want and need to say....and there are many that understand what you are going thru....

I gained weight with my journey with Chiari....and I am finally beginning to lose some and I do not weight train or go to a gym.....many of us do have thyroid issues and with it we can have fluctuations up and down with no changes to diet or exercise...

Not sure for me, if my weight loss I have had over the last few months will continue, but I am happy to see it go...

[phardin]

Thank you for your input. It's  so hard . I do notice at times I can let go a bit.  I am going to try to get back into working out without  the heavy weight training.  I've  gained sone weight and want it gone. I'm  sure it doesn't  help with our condition. I use to run 5 plus miles. Day and weight train everyday. Thought i will take  it slow and see how it bothers me I told my fiance that I want to start again  (he doesn't understand Chairi) but I told him that a specialist isn't  too far so if I injure myself I want to see Dr Trumble. I have spoken to uis office several times and he seems to really know his stuff.  Sorry I'm  rambling.  Not many who understand and probably  get tired of hearing it.

[selmaS]

  Anxiety is also a symptom fueled by Chiari.....depending which nerves are being affected by the Chiari....

Your symptoms can worsen due to stress and anxiety and planning a wedding is stressful.....get someone to help with the details to take some of it off of you....and help with the boys.....try to enjoy the wedding and do not focus on Chiari.....I know I had symptoms as far back as I can remember....and was not DX'd until I was 48.....so it is possible to live with Chiari ( since it is congenital we all have lived with it until we are DX'd) but it depends on which symptoms symptoms you are having and what changes were taking place....that was the case for me.....I had symptoms that would  come and go and when they were bad I went to Drs and never got answers until I was much older....I had a drop attack that caused
injuries that required surgery.It was one of those Drs that felt I had lupus and sent me to yet another Dr and during a MRI my Chiari was found.....

Chiari can seem to be fickle....since the symptoms cycle and change.....and we never know when they may get worse....but we can do things to help keep symptoms from flaring....and that may help you get thru the wedding without a flare....

[phardin]

I was recently  diagnosed  in March. Had all the MRI with and without  contrast and a cine flow study. Flow was great 4.4mm / 5mm herniation. Told the ringing in my ears was due to tmj and Chairi but I'm  a mild case and to watch and wait.  I am to have mris done 1 every year. I don't  feel terrible, mild headache at time CONSTANT rimging in ears and ears always feel full.  Some Tingling in face and mild muscle weakness  in arm time to time. Feel like I can't get a good deep breath at times.  Alot of anxiety as well. I go thru phases of worry then try to forget and relax but it's  hard. Getting married in Nov and i keep thinking I'm  going to become worse between now and then. Just geel so scared  at times have 2 boys that need me.

[selmaS]

  Hi and welcome to the Chiari forum.

It is very possible for those with Chiari to not require surgery as we all are not surgical candidates just bcuz we have Chiari....

There is more testing that should be done to see how your Chiari is affecting you and your overall health.

Most of us have lived half of our lives with Chiari b4 we had surgery....and I consider to have lived a "normal" life....and continue to live a "normal" life after surgery,

We all have to do research to see what is the best choice for us.