Meet Chiari Warrior – Michelle
September is Chiari Awareness month. Each day, I am going to share one person’s journey…in their own words. Chiari malformation is a condition where your brain herniates below the base of your skull, compressing the brain stem and spine. The symptoms are unbearable, at best, and there is no cure…
I can remember always having headaches since I was little. These kept up and all the doctors said was (which I know other Chiarian's have heard) "there is nothing wrong with her, she is a teenager and probably having boy issues, her periods are giving her headaches, she just wants extra attention as she is the middle child, she has juvenile arthritis, its all in her head and the list went on. So I got nowhere and continued to live like this.
I started having numbness and tingling in my face and head, hands and feet. I went to a neurologist for these symptoms and was told "I think you have carpel tunnel and tarsel tunnel and migraines and rebound headaches, meds and physical therapy should help, it did not. Continued with having these awful headaches that would seem to only happen when I coughed, sneezed, laughed, picked up anything heavy, doing most exercises and they would only last up to five minutes at a time, they were awful, my eyes always felt like they would roll up into the back of my head, I couldn't breath it was so painful it would take your breath away, had massive "spins", nauseous and all I could do was sit and not move until this passed. The doctor then said I probably had migranes and put me on meds that didn't help at all so I stopped taking those.
I stopped talking to the doctor about it, it just wasn't fair that no one took me serious. You almost begin to think the doctors are right and its nothing so you get used to the pain, it became the norm for me.
I went to my family doctor I believe in the late 90's and told him my symptoms with the 5 minute headaches and he actually asked me "what do you do when this happens?" I told him that I sat down until it all passed, his answer "guess you should keep doing that as it seems to work for you"!!!! I was floored and hurt yet again.
Fast forward to 2008. My husband was a long haul truck driver and I went on the road with him for 3 weeks (I think it was 3) and we had a layover in Louisiana (mind you it was in June and it was stifling!) We were both extremely sick with colds, sneezing, coughing, coughing, coughing, bladder issues, etc. I was taking eucalyptus cough drops so much that they burned all my taste buds! Well this is when everything really changed for me, I coughed so much that when I got home, I was walking into things, dizzy, falling down, headaches constantly, not feeling well at all, blurred vision, numbness was worse and bladder issues. So off to my doctors I went. I had xrays and CAT Scans which showed nothing, sent me to an allergist which I have a host of allergies but shots did not help me; went to the Urologist and he wanted to do surgery for the bladder issue but I wanted my other issues taken care of first.
The doctor kept going back to migraines so he put me on meds again. That of course didn't help at all so he thought maybe the dizziness was caused by my ears (equalibrium) because I also had ringing in my ears and swishing watery noises and could hear my heartbeat, so he sent me to an ENT doctor. He sent me for a tilt table test, hearing test and another test which I can't remember what it was. The table test was awful!!!!! They simulated the dizzies and it really stunk. He then wanted to do a MRI of my sinuses to see if there was anything there. At that time, I looked at him and asked "can I ask you a question that I don't know if you can answer?" He said "yes" and I proceeded to tell him my symptoms that only last 5 minutes and I told him what my doctor said "to keep doing what I was doing" and he was floored and ticked off. He said, those symptoms could be serious, it could be heart related or you could have a pin hole in the lining of your brain. He said since he was already requesting an MRI instead of just of the sinuses he was going to do my entire head. Had my MRI and went back to see him. He looked at me and said I have some good news and some bad depending on how you look at it. He said I had what's called "Arnold Chiari Malformation and its 23.8 mm herniation, okay, what the heck is that? He explained it too me and I stated I would do some research online and he said, please, be careful with what you read and believe, some of its true and some not. Anyone with Chiari and has been through the same issues with doctors I bet had the same feeling as I did when he told me......I could have kissed him because he actually listened to me and didn't say it was all in my head!!! He set me up with a neurologist (funny thing is....was the same one I saw in high school who said it was in my head) he then said that surgery would be the best thing for me, however, he no longer did surgeries but would assist the neurosurgeon who he then sent me too, too discuss my options.
I went to the surgeon and he told me it was my choice to have surgery or not. He said it may not do anything, it may make things worse, it may help some but it may also bring up new issues and it was extremely painful to have the surgery, so he gave me 3 months to make a decision, although, he set my date for surgery in case I went that route. I thought long and hard to decide whether I wanted to have brain surgery. I decided to have it and hoped that it would at least get rid of the "excertion headaches" and the dizzies. My surgery was scheduled March 30, 2009. Things went well, I was decompressed, C1 laminectomy and dura plasty. Was in the hospital for a week. On one of the days, the nurse left my drain open for most of the day and well needless to say the doctor was quite mad and she could have killed me, draining my spinal fluid out, couldn't have my bed above 20 degrees, the leg boots were back on along with a catheter and could not get out of bed and would experience excruciating headaches, nothing new right? I finally got to go home even though I told them I wasn't feeling well and was coughing. I think maybe a day or 2 at home I was soooooooooooo sick, coughing and of course when you've had brain surgery it sucks to cough. Went to my family doctor and curled up on the table I was feeling so bad. He walked in and my husband and I both let him know what I had gone through and come to the conclusion I had pnemonia on top of everything else. I was taking so many meds at that time I had to write everything down and when I was to take it and that I did in fact take because my memory was not good because of the meds. I got better over time.
I was allowed to go back to work after 8 weeks (my choice, the doctor told me it was up to me and if I didn't want to go back yet it would be understandable) It took me a good 3 years before I really felt back to "normal" for me. I did get rid of the "exertion headaches" and the dizzies for the most part. I still have headaches that last a day or 2, numbness and tingling in my head and face, numbness and tingling in left hand/arm, numbness and tingling in my left foot, joint and muscle pains, backaches, neck aches, bladder issues (after surgery, the bladder issues went mostly away) but my MRI's have not changed (thankfully) but just symptoms of Chiari that I have to live with, my lastest Neurologist stated I have the signs/symptoms of Fibromyalgia but he doesn't handle that, my doctor would, ha, checked me for MS as I do have those symptoms but believes I do not (thankfully). My memory is not like it was, I have days at work where I don't recall how to do something that I've been doing for 20 years and have to sit at my desk until it comes to me. I am thankful my co-workers understand and when I say I'm having a brain day, they know I need time. If I'm in a meeting and there is alot of noise, my brain shuts down and I do not remember anything or have any input, its like my brain has to catch up to everything because it was so overloaded trying to take in everything that's being said. Chiari is tough, I can't do alot of things that I used to enjoy or if I do do them, I know it'll be awful for up to a week. I miss going on fair rides, I can only mow a little bit, I can only shovel a little bit (yes, I don't mind doing these things) I can no longer drive very far as my hands go instantly numb. Riding long distances makes me ache and can hardly move. Sitting too much can make it very difficult to get up and walk, my feet, knees, hips are very stiff and hurt. Walking any distance or using treadmill or eliptical makes my feet go instantly numb, there are days when every single piece of my body including my hair hurts. Its sad to say, but you get use to this as you've known nothing else. I will say, I am thankful that I do not have any of the other diseases that can go along with Chiari (tethered cord, cervical instability, syringomyalia, EDS and the list goes on).
This has been my journey (shortened and I'm sure I have forgotten alot of things).....hope you never have to experience it.....it could be just "all in your head" :-)
Michelle (age 54)