hypocondriac

[johnda_cm]

My whole life people called me a hypochondriac because there was always something wrong with me. The aches and pains were a constant with me.  2 years ago i went to work for a doctor and I was finally treated for some of these aches and pains and migraines.  I noticed about eight months ago that my headaches were becoming more frequent and the migraines were becoming more severe.  Shortly after I began to have unexplained bouts of dizziness and tingling down my right arm.   The NP at the office that i work in ordered a CT scan of my brain because of a family history of cancer.  My insurance company denied the CT scan but approved an MRI.  Low and behold a 6mm tonsillar ectopia.  I was in shock, i know it doesn't seem like much, but finally there was a reason for all of my symptoms. I am not a hypochondriac.  So i went to see a neurologist and without even making eye contact with me she said "Chiari causes headaches, but none of your other symptoms. Besides 6mm is borderline."  I have lost control of my fine motor skills in my hands and sometimes have so much pain in my right side that I can barely walk.  I requested a second opinion with a neurosurgeon, but I wonder if i am thinking too much in to this.

[selmaS]

  I know how u feel....hang in there...things have a way of working out the way they were meant to be.

  

[johnda_cm]

Thanks Selma!! I had a really bad day today, but tomorrow is a brand new one! I do have hope for the future, but when I feel this bad i wonder why I am still trying to work.

[selmaS]

  I hear u...and that is the best way to approach this...see how it is affecting u and ur overall health and then see what is the best course of action.

See as many NS's u can with the same experience with chiari so u can compare and see which is the best fir for u.

I am sure if I was dx'd when I was younger, that I would have gotten to this point or mayb a few yrs younger b4 I had surgery....it was the symptoms and how it was affecting me that got the dx...and I was at a point I could not deal with it nemore....but it was a lifetime of on and off again symptoms.

  U will know when u need to do something, and u r better off then I was when u found out,

[johnda_cm]

Definitely a last resort, but i dont want to wait until i have no option on timing... I am going to hope that i can just treat the symptoms, but i dont want to let it get to the point that i can't work or take care of myself or my daughter.  just a lot to take in and a lot of things to consider... For now i am taking it one day at a time and manage the symptoms the best i can without meds.  I am not going to try to think about surgery until i have to, but i can't help but be hopeful that i cant wake up one morning without a headache or pain.

[selmaS]

  Well with chiari IMHO there is no more "normal " to go back to, chiari is life altering and we have to find our new normal's....

So many have had surgery hoping and expecting to go back to no pain and no symptoms and too many times they went with drs that offered surgery  and thought they would be cured....that can not happen, yes many can do much better with surgery and would be worse off if they did not have it....but some also have gotten worse in going with a Dr that is not as experienced .

And many times it is just the way their body reacted to surgery and the meds...there is no way to know.

SO surgery should be the last option.

[johnda_cm]

Thanks! i go to see the NS on April 17th and i am hoping that all goes well.  i really dont want to have surgery but i would let them remove part of my brain if it would put me back to normal again.  I have seen a steady decline in my physical ability over the past few weeks especially, but really i started going downhill approximately 2-3 months ago.  My nephew had decompression surgery about 4 years ago so i am going to take my sister with me to the NS appointment to get her opinion of him and make sure that he is doing the right tests, but waiting was never an option for my nephew, his herniation was 25mm and even though he was not symptomatic, he was in surgery less than a month after diagnosis.

[selmaS]

  Well make sure ur NS is a true chiari specialist and all related issues r ruled out as it can affect how u feel and heal post op.

[johnda_cm]

and no i have not had a mri of my thoracic or lumbar spine..... my neuro doesnt seem too concerned. she only ordered the cervical mri to rule out neck problems causing my weakness in my arms.

[johnda_cm]

i asked about Ehlers-Donlos because i have the "elastic skin" and hypermobility in some joints.  My 5 year old daughter does as well..  My boss once told me that either i had a disorder in my connective tissue or my body thinks that I should be over twice my size and then we just laughed it off.

[selmaS]

  Did u have a thoracic and lumbar MRI?...u can develop a syrinx in those areas too.

A NL will do an exam and do the Beighton test here is a link to Joint Hypermobility syndrome which is tested the same as EDS.

http://www.reumatologia-dr-bravo.cl/para%20medicos/crit%20y%20diag/DIAGCRITJHS.htm

[johnda_cm]

I have done some research on NS and sadly enough i am limited by my insurance on who i can see, but I was fortunate to find a NS that treats many patients with CM. I had an MRI today of my cervical spine.  It was negative for a syrinx.  How do they test for ehlers-donlos?

[selmaS]

  Hi and welcome to the Chiari forum.

We all seem we made to feel this way, it is not right, and no, u r not making too much of this, the problem is there r not that many Drs well informed or experienced with chiari and related issues.

Do make sure u research NS;s and go to one that is a true chiari specialist and see a few to compare of the same caliber.

  Make sure they test u for related issues, like a syrinx,PTC,disk issues,sleep apnea,ehlers-danlos......

  We do have a list of Drs here for u to use to research drs, it is not a referral.

   Know u r not alone : )