Recent Diagnosis
Posted , 3 users are following.
Hello,
I was recently diagnosed with Chiari type 1 after a trip to the ER due to losing feeling on my right side for around 10 minutes, (I thought I had suffered a stroke). I meet with a NS tomorrow. I am a healthy 33 year old woman. I have had migraines for the past several years (the drs would give me an IV drip of Benadryl so I could try to sleep them off). Additionally I have experienced frequent pains in my feet and tingling sensations throughout my body but mostly in my legs and feet. I often experience double vision, but that is likely caused by looking at several screens for work each day. These symptoms may or may not be related to chiari. My question is this, based on your experience will these symptoms continue to worsen over time? If I am a candidate for surgery will the surgery stop this from happening to me? I can live with it everyday, as I have been - but is it worth it to "deal" with these constant symptoms? Also, has anybody had surgery without the syrinx being an issue? Please help! Thank you!!!
0 likes, 2 replies
Apple62 madelyn53461
Posted
Hi Madelyn,
In answer to your questions, some people have Chiari and no symptoms. Other people are symptomatic. A lot of factors go into having surgery. How big is cerebellum tonsil herniation. I'm told the symptoms will increase until u have surgery. Nerve damage to your spine may occur which can't be reversed if you don't have surgery. Some people have surgery and are symptom free and it can return later. No one really knows. These are the symptoms I have 2 year post surgery:balance issues, trouble walking,eye pain,ears close,burning pain in my stomach, horrible neck and back pain. I no longer drive and I need some assistance with bathing. I'm unable to do housework or cook. I'm still able to go out for outings but with bad pain. My neck wobbles but I had a cervical fusion. At your young age hopefully you will be able to have the operation and bounce back. Please understand, I was 60 when I had my operation. I'm sorry to be so candid. I'm sure u want the truth. I'm just one story. I'm sure others have better outcomes then I have. If I can answer a question, please let me know. I'm sure u are checking the videos and groups. Chiari U.K. Has a great group on Facebook with some very knowledgeable people that can help you better too. Wishing you the best on the Chiari journey.
b2wc97455 madelyn53461
Posted
Apple had explained every thing, I had sufferd like you, at first I really ditested the operation, but I could not stay put any longer due to th pain, so had it done a year ago, the first 2 months was hll, but it gots better, I am reovering now, but I know that I am not abl to do the things I used to be abl to suh as: lifting shopping bag, sitting/standing too long..even sleeping more than 6 hours will give me a bit of headahe, but I am off any mediation - In my opinion the sooner the chiarian done the op. the better..beause I leave it too long my spine is killing me, they said nothing to do with chiari but I am sure it is as lots of people like us have similar issue like me after the op. but still muh better than not having surgery.
Wish you luck..take it easy, drink plenty of fluid eah day (2 ltrs), walk even for only 5 - 10 minutes..keep moving but gently