Diagnosed with Chiari Malformation Type 1
Posted , 6 users are following.
Hi I recently was diagnosed with Chiari Malformation type 1 with tiny syringomyelia. I have compared many other MRI's to mine and thankfully my syringomyelia doesn't seem to be as large as some others can be. Im only 19 years of age and this worries me. When I was a baby I had meningitis very bad and was left in a comma for awhile. I was lucky to recover from that. As I aged I thought I got my big major illness out of the way and was very excited for my future. Throught my high school years I have experienced some headaches through the night to the point where I would wake up. This seems to be a very common symptom. I don;t have these mirgraines everyday like it seems some people can get the which im happy about. Lately I have noticed the edged of my right hand where my pinky is can be tingly. I also read that this can be a symptom. My main concern is my life from here on out going to be hell. Im only 19 years old and was very excited for my future but as of right now I am not. I have been reading all of these stories and it seems that the future is always worse and it frightens me greatly. Im going to see my doctor January 5 about what I have. Does it get better? I know there is a surgery that is used as a treatment and can help people. So I guess my main question is does it get better or will my life slowly turn for the worse, im only 19 years old and want a good life for me. Also has decompression surgery help others with symptoms greatly? Thanks for the time.
0 likes, 24 replies
kekerene jjoshua123444
Posted
Hi Joshua. So I had surgery this morning at 7:00 am. My neck is in a LOT of pain but as long as I don't move it's tolerable. My doc had told me most people get muscle spasms. I prayed not to get them and I've yet to have one. Praise God. According to the nurses they said I'm doing very good in comparison to some of the patients they see coming in for this surgery. I was texting and on Facebook at 1:00 this afternoon so I must being doing well. I feel like I can already notice a difference in clarity in my head despite the pain. I'm so excited to see how I feel when the pain goes away. Well I just had some morphine so I am going to bed but I wanted to keep you posted. Take care.
jjoshua123444 kekerene
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That's so good to hear. I hope for you to have a speedy recovery so you can get back to your life! Keep me posted everyday I would like to hear about you. THANKS!
kekerene jjoshua123444
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kekerene
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Sorry accidentally pressed send lol. I'm a little groggy from the meds. They said that's normal for day 2 since the anesthesia is worn off. Other than that I feel good thanks'
jjoshua123444 kekerene
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kekerene jjoshua123444
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Hi Joshua. I'm good. The first 5 days were very painful. But each day gets better and they gave me plenty meds to help with the pain. I have noticed my back pain is gone. I haven't experienced any numbness in my fingers or toes. I'm eating and walking well. My neck is still very stiff and when I stand I get a little pressure rush to my head but I think with time that will get better. Would I do it again? Absolutely! I feel groggy because I'm on oxycodone, flexeril, and Valium but when the meds start wearing off I feel like the fatigue that I used to feel will be much better too. It's just hard to tell right now because I'm so doped up, lol. All the nurses were astonished at how well I was after surgery. They said most people are not that well after. The doc said out of all the procedures he does it's probably the most painful one. I can tell you this. Set your mind on the positive and not the negative and that will help tremendously. I prayed, asked all my friends and family to pray and I believed that I would be healed. And I fell like I'm almost there already.
b2wc97455 jjoshua123444
Posted
Vanessa have given you a good advice here, just like you are, I was jut like youare now, but I have gone to the state where I could not walk and have to resign from work that was 2.5 years ago - however after surgery 6months ago - I can walk, do lots of normal healthty people do, but I have to be careful, as its take around 18 months to really healed after surgery - I heard from my NS people who get worse again is people who do not accept the condition - i.e they start runnig before they can walk and they really start doing a noral too early. I take every thing on my own space now, actually its better because I do not get work out anymore - I am drug and pain free, I hope this going to be carry on.
Just kneel down - ask your heavenly father to make you better to have the right Neurosurgeon - taking some supplement such as magnesium and glucosamine also have to reduce the pain
laurbabe19 jjoshua123444
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b2wc97455 laurbabe19
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i think (in my opinion) the best thing to do for chiari is to have decopressionm dont wait too long...or you will damage your other nerves.. i previoulsy detested the surgery, but I suffered soo much, after surgery, I have my life back, recovering was hard for the first 2 months..but now, I have a normal life ...