Hello everyone! My name is Amanda. I was diagnosed with Chiari Malformation Type I in 2009 at 16 years old. The following years consisted of many, many, MANY tests, trials, and medications all in an attempt to treat my symptoms. At 19 years old I had decided that I had had enough with being a guinea pig and I stopped seeing my neuro altogether (silly, I know). A few months ago I decided to go back to my neuro to check up on things. I am happy to say that none of my MRIs or scans have shown up abnormal, however my symptoms have worsened a lot since I was originally diagnosed.
I work 45-50 hours a week, I take classes online, and I support myself. About 11 months ago my general manager at work went out on maternity leave, only to never come back. Subsequently we lost many other key positions, leaving me to pick up a lot of the slack elsewhere. STILL to this day, we have not been able to fill all the positions needed, so a lot of the stress is building up. I have become sick, exhausted, and depressed. I am so tired of feeling like I can't do anything without having some type of backlash! Needless to say, I am in need of some major mental and emotional support. While I have many friends and family who support me, I feel like no one fully understands what I am facing. So here I am.
I'd really love to meet someone around my age and in my area that I could not only relate to but be friends with!
Hi there Amanda, I'm sorry no-one who has viewed your post has been in your area and replied to you yet.
If you'd like to see who is near you in Rhode Island you could go to the Members tab and use the advanced search facility. I've just searched using RI and brought up 17 members so you can do the same and take a look through their profiles/posts to see if there is anyone you'd like to send a friend request message to.
Hope this helps. A ny problems let me know and I'll help you out. Kindest, Jules
I can completely relate! I was 17 when I was diagnosed with CM1. I had a decompression that didn't go well, and have now boycotted doctors as well. I'm almost 21 now, and live in CT. I am interested in using diet to try to control my symptoms, I would love to talk to you more, you can send me a message if you want!
So sorry you are having a rough time. Have you had surgery yet? My 17 yr old daughter had her surgery on May 12 and is doing better. She will has headaches every now and hen but they are not bad. She also had a cyst drained.
Hi there Amanda, I'm sorry no-one who has viewed your post has been in your area and replied to you yet.
If you'd like to see who is near you in Rhode Island you could go to the Members tab and use the advanced search facility. I've just searched using RI and brought up 17 members so you can do the same and take a look through their profiles/posts to see if there is anyone you'd like to send a friend request message to.
Hope this helps. A ny problems let me know and I'll help you out. Kindest, Jules
Hi Kristi. No I have not had surgery yet. I am trying to avoid that for as long as possible so I can stay on track with my education and work. I am worried that surgery will set me back with little or no benefit.
kristi72 said:
So sorry you are having a rough time. Have you had surgery yet? My 17 yr old daughter had her surgery on May 12 and is doing better. She will has headaches every now and hen but they are not bad. She also had a cyst drained.
Hello Amanda my name is Becca !!! I am right with you, stress and fatigue pile up on top of our condition and things go south...please allow yourself time to rest , I work 60-80 hrs a week and I shouldn't but I rest and when I sleep I don't use a pillow because without it my neck is in line with my head and it helps keep the csf flowing I wake up refreshed before I would wake up so exhausted
please don't take my word for it do your own research
for me this has been a God send ...I have given up on the medical system and am going to continue to take this treatment because it's working...I still see my Dr's ...I just won't get the brain surgery...
Thank you for your input. This is a topic I have been curious about for a while but not quite sure if it would be a good fit for me. When I suggested medical marijuana to my neuro he shot me down immediately. When I was diagnosed was around the same time that I was experimenting as a normal 16 year old would. And I found that when I had smoked when I had a headache it would help me. It wouldn't cure the pain but it would dull it enough where I would be able to function. I then brought it up around 18 years old after trying everything to my neuro and he wanted nothing to do with it.This was around the time I gave up. I still find that it helps me more than any medication has, however I've been hesitant to see another neuro about the subject!
Rebecca Misterly said:
I started taking 4 kinds of cannabis
cbd tincture
Whole cannabis plant extract
Cannabis juice
I vape the buds
please don't take my word for it do your own research
for me this has been a God send ...I have given up on the medical system and am going to continue to take this treatment because it's working...I still see my Dr's ...I just won't get the brain surgery...
Thank you for this advice as well! I have never thought of sleeping without a pillow!
Rebecca Misterly said:
Hello Amanda my name is Becca !!! I am right with you, stress and fatigue pile up on top of our condition and things go south...please allow yourself time to rest , I work 60-80 hrs a week and I shouldn't but I rest and when I sleep I don't use a pillow because without it my neck is in line with my head and it helps keep the csf flowing I wake up refreshed before I would wake up so exhausted
I understand what you're going through. I had my surgery in 2011. For 4 years everything went well. But now the symptoms are terrible like stomach-ache,weak knees, headache etc. I stopped seeing my Neuros for 6 months. Am thinking of seeing an alternative doc this month. I stopped teaching this year due to the pain I have every morning.
I am sorry you had to quit your job Lydia. I fear that soon enough I will have to do the same.I wake up every day feeling so sick and exhausted and then to be on my feet all day kills me.
Hi Amanda, I’m Nikita a 17 year old mum… I was diagnosed with Chiari 1 Malformation a few months ago…
I have now got sever symptoms and I’m always in pain, no matter what I take. I’m always swollen, I randomly bruise, aching bones, always have a headache, I see a Rheumy in August! but so far nothing they suggest work, 6 tablets a day and still nothing.
I had decompression in jan I’m 31 and it’s been God send I feel so much better and everyday I feel even better no one treatment seems right for the next so my experience can give little advice for the next but meds never seemed to help and at the point surgery seemed my only option left. It has truly helped but honestly have seen nor been told any info on future outlook of surgery so keeping positive outlook and just taking best care of myself and pray for the best. Good luck with treatments but surgery wasn’t that bad.
I'm sorry you're experiencing so many symptoms Nikita! I hope you find answers next month! I found that following the Paleo diet helped me for a while. It helped me discover foods I was sensitive to or intolerant of.
nikitz said:
Hi Amanda, I'm Nikita a 17 year old mum.. I was diagnosed with Chiari 1 Malformation a few months ago... I have now got sever symptoms and I'm always in pain, no matter what I take. I'm always swollen, I randomly bruise, aching bones, always have a headache, I see a Rheumy in August! but so far nothing they suggest work, 6 tablets a day and still nothing.
Thank you for your input on surgery and I hope all continues to go well for you! (:
Heather said:
I had decompression in jan I'm 31 and it's been God send I feel so much better and everyday I feel even better no one treatment seems right for the next so my experience can give little advice for the next but meds never seemed to help and at the point surgery seemed my only option left. It has truly helped but honestly have seen nor been told any info on future outlook of surgery so keeping positive outlook and just taking best care of myself and pray for the best. Good luck with treatments but surgery wasn't that bad.