I was 16 years old when diagnosed with Chiari type I with syringomyelia. My life of course turned upside in a single day. I never had any distinct, crazy symptoms that would have forced me to see a physician before my diagnosis. I suffered from frequent headaches, and occasional migraines which finally led me to see a doctor. He prescribed some different prescription meds, none of which helped. Thankfully, he decided to order a CT just to cover all bases. Within the same day of my CT I was researching Chiari without even knowing how to pronounce it. I soon sought several opionions before deciding on surgery in Marshfield, WI at St. Josephs hospital. I had decompression on July 26, 2006. Now 6 years later I have realized that some odd neurological symptoms has been occuring for most of my life.
Most notable is my lack of swallowing capabilities. Has anyone else had these odd symptom? I sometimes have to conciously remind myself to stay calm and swallow food before I start to choke. As long as I can remember I often "choke" on all different types of food and require concious movements to avoid choking. My neurosurgeon could not tell me if it was due to Chiari or not...
My most present symptom I did not have pre-op is tingling of nerves in my arms and legs. It brings a weakness down to my fingers and toes that is agonizing. I have brought it to the attention of my neurosurgeon but he says it sounds muscular and not nervous. I find a hard time agreeing because I know what it feels to strain a muscle or have muscle pain, and this pain radiates down entire limbs.
But on the bright side I would encourage those whom are still suffering from headaches even post-op (Yes, I know surgery cannot gurantee the headaches will subside, or remain tolerant ) to seek other causes rather then chiari. I blammed all of my frequent headaches on Chiari and decided that I will just have to live with them, when in fact I had an underlying food allergy that made me miserable. After I changed my diet I felt GREAT! I still get headaches but I am happy to say that its not as frequent.
any insight on these symptoms is extremely appreciated. I often find myself the odd one out and I have NEVER met anyone else with this disease. So glad to find a place where people know what the heck I'm talking about and I dont have to explain the zipper on the back of my head :)
I have the exact symptoms you just described and would have to say they are all Chiari related. I have tried stopping wheat & gluten, all nightshade plants and dairy. Did you have a different food allergy? I am always open to any ideas that will help my headaches. As far as the swallowing problems....I have to be really careful at what I eat to make sure I can swallow it. Even then I get chocked several times a week. I am sorry you are also dealing with that. A lot of Members also have tingling hands and feet & other nerve issues. My lips actually go numb & tingle along with everything else. I had major cervical issues though. You also have to think about Cranial Nerve disorders. Our brains was crammed into a small space. It also crammed up our cranial nerves and they control all body functions. I had Micro Vascular Decompression Surgery for Geniculate Neuralgia. I felt like I had ice picks stabbing in my ears 24/7 for 4 years. So, believe me when I tell you nerve issues can bring your life to a halt.
I am glad you like it here...It is like we all have a special bond. Every Member here is Priceless.
I have a gluco amylase deficiency, very odd disorder in itself. There fore I’m allergic to all grains and starches, including some other sugars. It was discovered when I had stomach biopsies before a gall bladder surgery. The difference it made was huge, im positive some of my headaches were chiari related. But the common headaches I faced everyday disappeared like that after cutting out all of those foods. ( yes, it’s ALOT of foods). Id suggest looking into it but there’s just not info out there, my clinic didn’t know much about it either. I wish people paid attention to the silly faces I make while convincing my body to swallow, they are probably priceless.
I had my decompression in 06 and I do have a lot of tingling and my hands and legs go numb. My only issue is that I'm clueless if this chiari related or med related? As I'm on Topamax to help keep the migraines down and I suffered from a large seizure. NOT chiari related as I large piece of my frontal lobe missing.
So...I can never figure what is what! The back of my head still has pain now and then. I figure there would be some arm pain/tingling because of them cutting into those nerves. My left hand often times becomes very weak!
Isn't there some nerve damage from the surgery itself?
I have no chocking problems. Are you going to follow up with a dr soon?
As far as I know it’s not nerve damage (I hope) it showed up suddenly in my left arm about 3 years post op, I now experience it in my left leg also. Rarely ever on my right side. I have followed up, my neuro said if it is chiari related my MRI show nothing new and right now the symptoms aren’t enough to warrant shunts or extr surgeries (I agree) . But I have my check up and mri this October so hopefully nothing eventful has changed!
I did forget to mention my most present symptom change which includes my speech ( thanks for the reminder!) lately I notice I tend to say words I’m not even thinking. For example when visiting my mother last I asked her what’s for Christmas. It was completely bizarre and happens quite often. I also tend to switch first letters up in sentences. For example instead of dog house I’d say hog douse. It baffles me. I bring it up to family and friends and they all say they too do it from time to time, but mines pretty frequent. Not only do I mix up my words but I often can’t think of words that I want to communicate with, it appears to elude my mind. All things I don’t normally do. Anyone else also?
Well i am glad to hear that, ( not glad for you) i am having the same issue ....change words around, asking for a key when i mean a spoon???? not sure where this is coming from but it is driving me crazy, having difficulties recalling things, suddenly lost the ability to spell and the list goes on and on. For a while i thought its just stress and english is my second language, my native language is German so from time to time i mix things up! This is so much more than just a little mix up, very intertaining for my co-workers and family but not so funny when i am in a meeting and have to talk to my staff as a Director of Nursing. I understand how frustrating it can be, hang in there.
Wisco990 said:
As far as I know it's not nerve damage (I hope) it showed up suddenly in my left arm about 3 years post op, I now experience it in my left leg also. Rarely ever on my right side. I have followed up, my neuro said if it is chiari related my MRI show nothing new and right now the symptoms aren't enough to warrant shunts or extr surgeries (I agree) . But I have my check up and mri this October so hopefully nothing eventful has changed!
I did forget to mention my most present symptom change which includes my speech ( thanks for the reminder!) lately I notice I tend to say words I'm not even thinking. For example when visiting my mother last I asked her what's for Christmas. It was completely bizarre and happens quite often. I also tend to switch first letters up in sentences. For example instead of dog house I'd say hog douse. It baffles me. I bring it up to family and friends and they all say they too do it from time to time, but mines pretty frequent. Not only do I mix up my words but I often can't think of words that I want to communicate with, it appears to elude my mind. All things I don't normally do. Anyone else also?
It is in a way kinda funny....most people just think its me, that is just how i talk and close friends seem to know what i want to say and fill in the blanks for me. Even if i say"oh thats not what i mean they often reply oh i know.