Hi everyone. I am new to this forum but not to my Chiari diagnosis. I started having symptoms a little over 3 years ago. I had weakness in my legs, pins/needles feeling in my hands and face as well as cold prickly sensations. I then started having difficulty swallowing. I had so many symptoms…thus started my endless journey of doctors. I have had 3 different Neurologists, Gastroenterologist, ENT, Bone doctor, Rheumatologist, Pain Management and 2 Neurosurgeons. I have had every test under the sun and eventually diagnosed with Chiari, Syringomyelia, dysphasia, fibromyalgia and Tarlov Cysts.
I had a hysterectomy last year because they thought that might have been my problem (it wasn’t). I underwent spine surgery Nov. 2013 for the cysts on my lower spine, but I still have them in my cervical and thoracic spine. Those they don’t want to touch. I had to fly to Dallas for spine surgery because there is only 2 doctors in the country that operate on Tarlov Cysts.
Now my Chiari symptoms are getting bad. I’m having vision issues, clogged ears 24/7 with ringing in my left. Bad headaches and neck pain with swallowing problems. Not to mention my spine surgery has caused issues in my legs.
I was a Detective for 15 years and thought I would do that job at least 30 years. It was my passion but I had to medically retire in Oct. 2013. This has been extremely humbling and difficult to adjust to. I used to run, hike and work out everyday. I haven’t done any of that in 3 years.
So there’s my story. I am hoping to connect with people who understand when others don’t. God bless everyone suffering from these terrible diseases.
Welcome to our site. I understand the other 2 surgeries weren't for Chiari/Syr and not too long ago, but when are you going to a Chiari NS specialist since the rest of your symptoms sound related to that? You have a good group with Dr. Theodore at Barrows not too far from you in AZ.
Yes, this disorder does change our lives, and it's difficult giving up our daily's activities. I'm in the same boat so you're not alone.
Hevn, I second the recommendation for the Borrows group with Dr Theodore. He screens for cranio cervical instabilities along with Chiari. I am so sorry that you are going through this, your life has changed a lot. There are so many of us that are dealing with the loss of our “before” lives- it feels like an identity crisis for me. Its getting better for me as time goes on, though, and Iv learned to accept parts of my new life, but there are some things I just won’t accept- not until I have turned every stone with this diagnosis and all of the conditions that come along with it. Part of my coping is keeping hope that some of my old self will return with the right interventions/surgeries. I know it’s hard to be hopeful when symptoms are getting worse, but keep in mind that lots of people have good outcomes with decompression and are able to return to some assemblance of normalcy. Hang in there Hevn!
Thank you for your welcoming and encouraging responses. It really does help knowing we’re not in this alone. I do see a doctor from Barrows Neurological Center who is very good but he is still doing the waiting game with me. I can tell him all day about my symptoms but he said my Chiari and Syringomyelia are mild. I thought if you were very symptomatic then it isn’t mild? Ugghh!! I’m sorry to vent but I don’t want to cry!
So good to have you here you have found a very helpful group of people.It means so much to talk to those who understand your pain,and most here do know how you feel.Welcome