So I was diagnosed back in January, and it seems like it's an uphill battle. My body has had more weird sensations and done more peculiar things in the last year than have ever happened in my life. I have your general dizziness, excruciating headaches that radiate from my eyes to my shoulder, irritability, numbness and tingling in appendages, forgetting words ( and my train of thought rolling right out of the station), clumsiness, etc. But there are a few things that are happening that I can't find any information on. I'm just confused. I don't know if these are symptoms of Chiari or if there is another disorder/syndrome that goes hand and hand. Please let me know if you have any of the following as a part of Chiari or something else:
Extreme sensitivity to light, sound, and temperature
fullness in my ear ( the side that has the largest herniation)
swelling fingers ( my wedding band will be on and within minutes out of nowhere it will have left and indent because my fingers have swollen so much) I don't use much salt in my diet and this only began around the same time as other symptoms
There is an indescribable pain/sensation that shoots down my arms and legs, it's not numbness, tingling, stabbing, throbbing or anything else I've ever experiences it's mainly in the arm on the side that I have the larger herniation. It feels like when you have an IV and they flush it... like a burning cold sensation. Unfortunately, I don't know a better way to describe it.
Nausea and occasional vomiting
All of these things are just bugging the bejeezus out of me. Help? Suggestions? Input?
I too am very sensitive to light, sounds, and temps. The fullness in the ears. I'm also prone to all sorts of weird burning, freezing sensations at random. I think these are probably chiari related. Have you been able to find a good doctor? I have fought an uphill battle myself so I understand your frustration. If you are near Ohio I would recommend the Mayfield Chiari center. I had my first appointment yesterday and it was the first time a doctor took me seriously since this ordeal started!
I have or have had all the symptoms you describe. I actually think the IV Flush anylogy is the best way to describe the burning pain in my leg muscles. I told my husband that yesterday after I read it.I find if I push myself too much It makes me throw up. It often happens after housework. I also gag brushing my teeth so that's always a possibility that I will be sick. I get all kinds of strange noises or sensations in my ears. Alot of whooshing when the pressure in my body builds up before it rains usually. Sometimes ringing and sometimes I can feel my heartbeat in my ears when I lay my head down on a pillow. It's a throbing sensation and very unpleasant. I am always sensitive to light and noise and my fingers swell but I atributed that to weight gain but who knows, maybe it's related to Chiari.
I hope your doing okay today Wendy
There is a list of symptoms under the Resources Tab above and then scroll down to Symptom List (Killerbanshee)
Thank you for all of the responses! I have an appointment with a new neurosurgeon later this week. I'll discuss with him what's happening and I'll see what he thinks of it. I've had two Neurologists say that I have CM, it shows up in 3 different MRIs but I've had two neurosurgeons tell me that because it's 5MM that it is not what is causing my issues. So I'm trying a new one in DC and hoping that since he's in the city with a university he will handle this issue a little better. Almost every medical problem I've ever had could be attributed to this.
I think you might be on to something with the POTS syndrome. I have most of those symptoms. I'll talk to the NS about everything. Hopefully this NS listens to me! On of the NSs that I went to told me "He treats anatomy not feelings", then pointed out where the malformation was on the MRI then told me it was probably just bad headaches. It makes me hesitant to go to anyone, ya know? Just keep swimming.
Nope. I only found out about him AFTER I made this appointment. I was at one of the walks for CM that they had in North Beach, MD (by accident) and a woman there told me that Dr. Henderson awesome and that he really helped her daughter. Do you have experience with him? I just need an NS to listen to me.
Sorry to butt in on this convo, but I am curious as to whether or not Dr. Weingart treats patients after their decompression? I have a NL that is helpful, but I am just not getting the kind of help that I am looking for. I know this will probably haunt me for life, but I just want to be able to contol some of the symptoms. I was fooled (by myself) into thinking the surgery would cure it all. Now, I am just frustrated!!! I hate that my life doesn't seem like my own anymore.
Beeba said:
No I don't but he comes highly recommended on here. I used dr John weingart out of johns hopkins hospital. He came highly recommended by other members and other drs in the medical field. He is held in extremely high regard at Hopkins. An hour is not that far. Good luck and let me know