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Avatar universal

Strange Symptoms Before & After Chiari

Hello, I am 18 yrs old, and I have had this problem for about 5 yrs now or more and  I'm really worried what is wrong with me due to the fact that my symptoms seem to be getting worse with each and every day. I have posted this before on MedHelp on various Communities since I joined in February, but my problems are extremely worse now than they were then.  I have been to numerous doctors before and if you would like to know which ones I have seen, I’ll be glad to list them. Right now though I FEEL AS IF NO ONE CARES ABOUT ME!!!!!! :(

I was diagnosed with a Chiari Malformation that was about 13mm in 2007 which they discovered in an MRI. I have had surgery done on June 13, 2007 in order to cure it. It only cured my severe headaches when I laughed, but it didn't cure my strange vision problems and daze feeling that I have 24/7. I also have Fibromyalgia which I believe might be misdiagnosed, near-sightedness, astigmatism and  Lazy eye.  

My vision problem first started off when my vision slowly became blurry with blind spots. Now I see strange colors in my vision 24/7 with my eyes opened or closed. These colors have been getting worse since when I first posted these symptoms on MedHelp until now I see really bright flashes of light that engulfs my entire left eye at times. It first began as a tiny spark and now like I said, it’s like someone is taking a big flashlight and shining it right in my left eye and continuously turning it on and off. Sometimes it is a white or yellow light but other times it appears green and gradually “slides” across my entire left eye. I have severe pain behind my eyes 24/7 too now that feels like someone is stabbing me right behind both of them. I also have discharge or something coming out of my eyes that keeps coating my glasses and I have to clean them multiple times during the entire day.
I also have a very strange feeling in my head 24/7 like I not even here. I really don't know how to explain it, it's like I'm not here or as if I'm dreaming. My short-term memory is horrible!!!!  I also keep getting my speech messed up when I talk.  

Other newer symptoms that I am now experiencing that I didn’t have in February. It is now a “chore” for me to even walk from point A to point B. My legs don’t even seem to want to carry me. I have severe pain in my ankles, knees, shins, and sometimes my calves 24/7. I feel as if I’m walking like how someone would after they have been horseback riding for a good while nonstop (I have gone horseback riding before  for a hour nonstop so I know how I felt once I got off of the horse). My legs don’t even seem to want to move right, almost like I’m limping without the limp if that makes any since. My bones have been locking up and cracking really loud and I’m completely losing the arch in both of my feet. I also have been stumbling and almost fell down multiple times now as well as twice on the stairs. :(

I am experiencing great deals of stress due to these medical problems and I know that it isn’t Stress like my doctors are telling me it is. They told me that as well about why I got severe headaches when I laughed as well and then I went to see a new doctor and he truly did find something other than stress wrong with me. So for my belief and for this reason I know that something is very, very wrong with me, it just hasn’t been found yet. I'm really sad and discouraged about these health issues. :( I thought they were getting better for awhile only to find them come back and strike twice as hard. I just feel as if no one cares at all about me. I feel like I'm completely different than everyone else and I'm sooo sad lately. :(

Please if anyone knows what might be wrong with me, please don't hesitate to respond!!!! :) Any and all information is greatly appreciated!!!! Thanks!!! :)
6 Responses
620923 tn?1452915648
COMMUNITY LEADER
Hi.....I do believe we spoke once b4....and I must start by saying there is no cure for chiari only treatment to lessen the symptoms. It is possible that u may require another surgery, or that a chiari related condition is responsible for ur current symptoms.

It is extremley important to see a chiari  specialist (ma Dr who's whole focus is chiari and chiari related conditions)


Once again I must say, once u have chiari u will always have chiari....find a dr that can help u deal with the issues u r now having.

May I aks when was ur last MRI? visti with ur surgeon??

Who was ur surgeron??

It is possible for stress to make u feel worse and it is possible to have migraine HA's along with chiari HA's.

I would suggest u look at TCI in NY for an eval....please do research on the drs on our thread of chiari specialists.

"selma"


Avatar universal
Thank You sooo much for your response, I greatly appreciate it!!!! :) Yes, we have chatted once before, but I'm really worried as my symptoms keep getting worse day by day. :(

I have had my last MRI, I believe sometime in February. My last visit by my surgeon was I believe sometime in January. My surgeon Dr. Winer, said that I have had no re-occurrence with my Chiari Malformation and just as told me that he didn't need to see me no more even though I still have many problems. He pretty much acted as if those other symptoms were only caused by stress. :(

Thank You sooo much again, I greatly appreciate your response and I'll check out the doctors on your Chiari Specialist thread. :)

Take Care and Best Wishes,

"Please_Help950"
620923 tn?1452915648
COMMUNITY LEADER
U r welcome....I know this can be a stressful condition to understand all the diff symptoms.


Were u checked for other conditions like a syrinx or tetherd cord?


"selma"
Avatar universal
No, I don't believe that I was tested for a syrinx or tetherd cord. How would they be able to find out those? Do you need to have a MRI of your backbone?

Thanks again! I greatly appreciate it!!! :)

Take Care and Best Wishes,

"Please_Help950"
620923 tn?1452915648
COMMUNITY LEADER
Yes u would need to have an MRI of ur lumbar spine and ur thoracic spine.
All chiari drs do look for these issues as well as the EDS.

U r welcome.

U may want to read the info on these in the Health Pages here on MedHelp...there is an icon top right of this screen or there is a link in the welcome message at the top of the page.

"selma"
Avatar universal
Okay, I'll check out the info on those two conditions very soon. I'm going to ask to have a MRI done of those areas on my Spine when I see my doctor hopefully very soon. Thank You sooo much again, your kindness and consideration means a whole lot to me!!!! :)

Have a Wonderful Afternoon,

"Please_Help950"
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