Recent Diagnosis

[amoody21]

Hey guys. I just received my Chiari Malformation Type 1 diagnosis today. The neurologist who reported it to me did not seem to have a wide knowledge base concerning the condition. I have some mild symptoms including some periodic loss of sensation in my face as well as random tingling down my left side. These are the symptoms that prompted my MRI as it was suggested that I might have early signs of MS. Luckily, there were no signs of lesions or tumors on my scan. I am 28 years old and I am in relatively good health. I gave birth to a sweet baby boy about six months ago. It was a month before his birth that my symptoms began. I had a relatively easy pregnancy and birthing process. I guess I'm just here to try to understand the implications of my diagnosis a bit better. Is this something that will greatly affect my quality of life? Is my life expectancy going to be impacted by this? My doctor did not have a wealth of information on the topic.

Any and all information will be greatly appreciated. Thank you in advance for your time and effort. It is my hope that I'll be able to do the same for someone else one day!

[DSH519]

Sorry to hear of your troubles. This site is great for finding people who understand what you are going through. I hope you can find a true Chiari specialist who you can trust. Trust in your medical team is crucial for helping ease the anxiety that often comes with this diagnosis. Best of luck and we are here for support

[Lottida]

Hi & sorry to hear about your knew diagnosis.  I think a positive attitude is key.  You can look at some of the Chiari websites (csfinfo.org, Chiari institute, mayoclinic ect...) to review some of the patient testimonials.  I read one that a competitive swimmer in her 20's had the decompression surgery & is now competing again (her NS actually attended 1st meet).  Like Selma said everyone is different since there are so many different symptoms associated with Chiari.  You will definitely needed the MRIs of your whole spine & CINE MRI to help rule out related conditions and determine if you have a CSF blockage.  I also had like 6 xrays of neck & head to help rule out bone/structural issues.

Surgery is usually only done to restore CSF flow if there is a blockage.  Again like Selma said,  EDUCATE yourself because many of us have had doctors tell us some crazy stuff!!!  I would look up every related condition & have some knowledge of that as well.  When you are educated, you are able to tell if the doctor is feeding you some line of bullpoop......lol!!  The best thing that you can do for yourself to prevent the "doctor rollercoaster" is to find a Chiari specialist (even if you have to travel)!!!!!  You will need copies of all records & tests already done.

Please know you have lots of support here & do keep us posted!!  Good luck & God bless!!

[amoody21]

Thank you so much for your feedback. Any and all information is so helpful. I hope all is well!

[selmaS]

  Hi and welcome to the Chiari forum.

For each of us, the answers to the questions you pose may be different due to  age, and other underlying conditions.....

  You said you had a MRI and ruled out MS....other conditions to rule out are lymes and lupus.....and to be sure you have a CINE MRI and a MRI of the thoracic, and lumbar spine as well as cervical spine....this will help determine if you have a syrinx, disk issues or tethered cord...then there is testing for related conditions...POTS< ICP< CCI, Ehelrs-Danlos, sleep apnea and testing to check  for low levels of vitamins and minerals....

If you are a surgical candidate it will affect your daily activities...and what you might be able to do in the future....I had surgery 6 yrs ago this month and I am doing better all the time...keeping in mind it was 2 months b4 my 50th Birthday when I had surgery.....

Finding the right Dr is key!
Use our list of Drs to research Drs as the list is not a referral nor an endorsement of those listed on the list...it is just a list of Drs members here have been to, treated by and liked.

Educate yourself so you will know when you have found the right Dr for you.

Lastly.....know you are not alone.