New to this forum but not to Chiari (unfortunately)...

[kristi2327]

I was misdiagnosed with MS for an entire year 5 years ago and then I was properly diagnosed with Chiari Type I Malformation.  

My symptoms have steadily gotten worse over the years, however the anatomy of the disease has not changed.  Pressure headaches (this is a remarkably kind title for them) resultant from ANY type of strenuous (sometimes not-so strenuous) activity put me down for the rest of the day and the tingling and numbness in extremities have become a frustrating and a losing battle! Not to mention the loss of balance and occasion speech issues.  Over the past 8 months, I have gone from a physically fit and highly active athlete to a lethargic, deeply discouraged and extremely exasperated individual.

The Chiari Specialists at the Cleveland Clinic have been handling my treatment and I will be undergoing the decompression surgery within the next couple of months.  I am nervous and excited at the thought of finally getting some relief and solace and am happy that I found this forum.  Normally, whenever I mention Chiari, I am glared at through confused eyes and I have to, once again, explain the disorder.

It is a very frustrating and unfortunate malady and I hope to soon find relief. If there is anyone out there who can offer me some "post-decompression" (or any other) advice, thoughts, problems or successes, I would LOVE to read them!

Thank you and I hope everyone has a wonderful holiday season!

[selmaS]

U need to look into traveling to a specialist and not settling with just a local NS....u need and deserve the best care u can get.

Look into to state medical aid....as I believe u said u have no insurance...and I do know many chiari specialists do help out at clinics...so u can get the same care.

"selma"

[dermarfx]

Every-time, I read someone has had surgery, It is very hard to imagine, no ringing, no headache....no top of eye pain......relief, it is inspiring to me, but I am afraid I will not get the proper treatment because of where I live..in Mississippi.
  I imagine, everyone feels this way..........I just wish it would end the ( CM1 )that is that would end.

[jorlex137]

Hello!
I had decompression surgery Nov 24th, and currently in recovery from that.  I am happy to say I no longer have Chiari headaches.
Recovery has been up and down.  Both good and bad days.  I've recently gotten headaches in my forehead and face that feels like pressure.  However I think this was my own doing as I thought I was healing good and then started doing stuff I probaly should not have.  

So my biggest advice is after surgery take it easy and just cause you feel good doesn't mean you should start hopping around like normal.

Annoying part is the scalp feels numb and its a feeling I can't explain.  

I suggest having soft foods at home for that first week!  Crunching on things does not feel all that good!  

Best of luck to you!
J

[rod44]

Hi and welcome, I have not had surgery, I have borderline Chiari due to a congenital intradural cyst, fused vertebra, TC and a syrinx in the cervical/thoracic junction, my NS feels that resolving the issues I have in this area of my spine should relieve the Chiari...one thing I have learned over the past few months is that Chiari is never straight forward with many secondary issues that need to be looked for such as CSF obstruction, TC, DDD and Syringomyelia....
Selma can explain TC, DDD and the other issues better than I can, I know that she will agree that a full spinal MRI and CINI MRI are important for Chiari patients to rule out the above mentioned issues....

Ray :)

[selmaS]

Hi and welcome to the Chiari forum.

U have my permission to read my journal...click on my name and it takes u to my profile page....down on the left is my PFD experience. I had my surgery in May and am going thru some additional issues due to other chiari related conditions.

I am so glad u found us and that u found a dr that is well versed in chiari.

We also have a thread here titled How many Zipperheads, and u can find out who has had surgery and little bits of info about the surgery experience they had.

So happy to have u join our little family, sorry u had to seek us out tho.

"selma"