Living with Chiari

[STL5]

I seem to be someone that doesn’t fit into the norm- if there is one.  I originally went to the doctor because the left side of my abdomen was numb.  The neurologist I was referred to put me through different tests in the office then ordered an MRI.  Based on what the radiologist said, I was then referred to a neurosurgeon.  After the neurosurgeon read the MRI while I was there, I found out that the radiologist said that I had tumors in my spinal cord and the neurosurgeon said that the MRI was read wrong and that I did not have tumors but I did have a Chiari malformation.  I told the surgeon that I had pain on my left side/left shoulder/chest that had developed in the weeks since seeing the neurologist and that I still was numb.  When climbing stairs or a hill I would feel like my chest was being squeezed and it would be difficult to breathe.  I was told that I do not have the classic symptoms of a chiari malformation (regular headache, dizziness) and to see how things go.  Since then, the pain has gotten worse and I have given up my walk at lunch and avoid climbing stairs since the pressure on my chest would cause me to have trouble breathing.

I did some research on the internet and came to the realization that the excruciating head pain I have had the past 20 years when I cough is probably related.  I have never labeled it as a headache since it usually didn’t last.  I avoid coughing if at all possible though.  I have been fatigued for as long as I have had kids so I have always associated that with them.  I have snoozed through a soccer or baseball game because I am so very tired-thank god for sunglasses.  I am beginning to think that the problem I have had with my right hand might also be related since it is numb and the sense of touch is almost gone.  I have a lot of trouble typing, holding onto objects, feeling with that hand, and so on.  I now have ringing in my ears that has developed in the past few weeks.

From where I started in June and where I am now in November, I have seen my health deteriorate.  Since there is no cure, at what point should I seek a second opinion of what to do?  It seems like there really isn’t much that can be done you just have to find a way to live with it.  Am I wrong?

[lu7997]

First off. I am so sorry that u are suffering. Second is your surgeon a chiari speacialist if not u should look fo one as most doctors I have learned Di not seem to recognize chiari as a problem but just something that is there.  There may not be a cure but there is management out there and I have not yet had my surgery I am lookig forward to the relief following it as so many people have expressed a lot of there symptoms decreasing afterwards.


Start by gathering up all your films (the radiology department at the place where u had the MRI can give u a copy of the films). This will save u time and help facilitate the doctors apointments going better.

Next if u don't have one find a speacialist in chiari.

Those where the two most important prices of advice given to me an they made all the difference for me.

Good luck and no u don't have to just live with the suffering  

[selmaS]

Hi and welcome to the chiari forum.

It is so diff to say we have symptoms when we have always had a reaction to a common cough or laugh..or strain...if u always had it how would u know it was a symptom...too many times we r dismissed and misdx'd.

Once u have a chiari dx I would suggest getting copies of ur MRI's and all the reports and get a second opinion...by a chiari specialist.....

Surgery helps slow the progression...especially if u have a CSF blockage if u do not have surgery to open the flow u can develop a syrinx which is diff to do nething with even surgically and it can cause perm nerve damage and paralysis  .

Chiari is life altering so yes, u do need to learn to live with it along with taking precautions to keep some of the more debilitating symptoms from occurring.

It is best to get a full check to rule out having related conditions...and be sure ur dr is a true chiari specialist.

"selma"

[Lymanlady]

Hi,
Welcome aboard!
I would like to say is don't give up and think your life can't get better! A lot of us have had surgery and our lives have improved! Once I realized that my life had changed and would  not be the same ever again.I accepted that and moved on..Most days are good for me but some are not and I struggle. Being that I have more good days than bad when I have bad days I know good days will be back and that is what keeps me positive. I just want you to know that Chiari is not all bad. We could have something much worse!