Hello everyone, I'm new to this and glad to have found this site. I now know I've had mild symptoms of Chiari (shoulder/back pain, splitting headaches when I coughed) for quite some time which I ignored. The last week of Sept, I experience tingling throughout my entire right side of the body. PCP sent me for an MRI and NL who diagnosed me - 12mm with small syrinx. I'm currently on Neurotin and seeing a Neurosurgeon on 12/5.
Since the last week of September, things have progressed with dizzyness, numbness, tingling, bad neck, shoulder and neck pain, dull aches in arms and legs and some fatigue. From what I have read, these seem to be mild compare to some people, however, I am a little scare of how quickly this came on after the first tingling episode the last week of September. I"m stressing because it's seems like everyday it's something new and my next appointment is weeks away.
Is this normal to have all these happen in such a short amount of time????
Wow! Your symptoms are very similar to what I was going through. No one experiences the exact same thing...everyone is different...but what you are describing sounds like most of the people I have met with Chiari. I had terrible headaches every time I laughed, coughed, sneezed...etc. Sometimes I would experience muscle spasms on my face and my jaw would lock up. And then that was accompanied by my throat closing. Let me tell ya, choking on laffy taffy in a work related meeting is no fun...lol.
When I was diagnosed, I had a 9mm herniation and a small syrinx. I found a neurosurgeon at the Presbyterian Hospital (UPMC) and had surgery August 16th. It was THE BEST decision I could have made. I feel amazing and am getting back to my life. I still experience some tingling on my face, but it is not as bad as it was before the surgery..and is getting better as I heal. I am back to work full time (I am a Resident Coordinator for a college) and am back to exercising 3xs a week.
I am extremely thankful that my story is a positive one...because everyone's story isn't like mine. Chiari thought it had me...but I KICKED CHIARI'S BUTT!!
So happy you got a diagnosis....as far as your sx's progressing so quickyly....thru all i have learned throughout my own journey is that every body is different.
i know what you mean when you say that it seems like every day there is something new to add to the list!!!
If at all possible..have someone go with you to the NS appt....another set of ears is great...also, bring a list of all your sx's..even if you don't think it is related....
you have come to the right place here..we 'get it'..can be very un-nerving, to say the least. But, let me tell you..the folks here have saved me...this condition can be so overwhelming and lonely..for me anyway..i am sure others feel the same ...so..that being said..join in on discussions, ect...get to 'know' folks and we are all here to help one another..we are not doctors...but we can share our own experiences , which in turn may be helpful to you..i hope.
again....welcome ..look forward to getting to know you.
welcome- i agree keep a medical journal and yes please take someone with you if at all possible- and personally i will have to say yes its normal, because thats how it was for me-almost made me afraid to go to sleep in fear of what i was going to face when i did wake up. On your side though is you seem to have gotten into the right doctors in a relative short period of time and that is a good thing..one thing though i would like to say and believe me i know it will be difficult not to do but try not to add more stress to you, i feel added stress exacerbates the symptoms.
Everyone is TOTALLY different. Chiari is tricky that way. The tingling and pain , aside from the headaches, is because of the syrinx. The good thing is that they found it! Most syrinxs will shrink after surgery. The flow of spinal fluid will be restored and this keeps the syrinx from getting bigger. 12mm is a significant herination but from what I’ve heard from others, it’s not the size that matters. Don’t be scared if you have to have surgery because it will help you. I pray that you have support. I’m a bit nervous because my daughter just had an MRI last night to check for a syrinx. I’m going to pick the cd up as soon as I get off today. I don’t want her to have surgery for anything but if she needs it, I’m all for it! Be happy that you have a diagnosis because some people go through hell and back before they have a proper diagnosis. Hang in there! This site works miracles!
Thank you SO much for replying. It's funny - I posted this question as a whim - on my way out the door for work - and didn't really expect much in responses because I've seen so many boards where a lot of questions are posted but no one answers. 20 minutes later, my phone is blowing up with these responses. lol I was so relieved to read your post first giving me the little pick me up I so needed. I'll hold on to the hope I got out of your message through this darn thing and hope to join your "I kick Chiari's Butt" club. :)
As far as exercising (which I haven't been up to doing much of anything this past month), I did ask my NL about that and they weren't sure on how to answer me. They were to call me back but I haven't heard back as of yet. Is it safe to think it's ok as long as my body doesn't revolt against me the next day? :) I"m thinking of low impact - prob ellip and treadmill. Any advice? mmpeanut said:
Wow! Your symptoms are very similar to what I was going through. No one experiences the exact same thing...everyone is different...but what you are describing sounds like most of the people I have met with Chiari. I had terrible headaches every time I laughed, coughed, sneezed...etc. Sometimes I would experience muscle spasms on my face and my jaw would lock up. And then that was accompanied by my throat closing. Let me tell ya, choking on laffy taffy in a work related meeting is no fun...lol.
When I was diagnosed, I had a 9mm herniation and a small syrinx. I found a neurosurgeon at the Presbyterian Hospital (UPMC) and had surgery August 16th. It was THE BEST decision I could have made. I feel amazing and am getting back to my life. I still experience some tingling on my face, but it is not as bad as it was before the surgery..and is getting better as I heal. I am back to work full time (I am a Resident Coordinator for a college) and am back to exercising 3xs a week.
I am extremely thankful that my story is a positive one...because everyone's story isn't like mine. Chiari thought it had me...but I KICKED CHIARI'S BUTT!!
Thank you Lori. I'm glad I found this group - (but not really glad I had to. lol). I got a little emotional when I read your message..."we get it". What a feeling knowing people know what I'm going through...it's tough explaining this to other people. Especially when they asked you "isn't there neck exercises you can do to strengthen your neck and make it all go away?" Had to scratch my head to that one. :)
I look forward to "meeting" all of you.
lori said:
hi...1st off..welcome!!!
So happy you got a diagnosis....as far as your sx's progressing so quickyly....thru all i have learned throughout my own journey is that every body is different.
i know what you mean when you say that it seems like every day there is something new to add to the list!!!
If at all possible..have someone go with you to the NS appt....another set of ears is great...also, bring a list of all your sx's..even if you don't think it is related....
you have come to the right place here..we 'get it'..can be very un-nerving, to say the least. But, let me tell you..the folks here have saved me...this condition can be so overwhelming and lonely..for me anyway..i am sure others feel the same ...so..that being said..join in on discussions, ect...get to 'know' folks and we are all here to help one another..we are not doctors...but we can share our own experiences , which in turn may be helpful to you..i hope.
again....welcome ..look forward to getting to know you.
Hi Abby, I checked out the resources pages. Thank you - there is a ton of information. Unfortunately, I have a soldier (my daughter) deployed in "the sandbox" so stress is an all time high this year. I guess I shouldn't be too surprised that it's all happening so fast now. :)
Thank you for the prayers; I will keep you all in mine as well.
Abby said:
With a syrinx sometimes, it progresses slowly, then again, it progresses fast. We all are different, but suffer the same. So sorry your having all these problems and pain. We understand. Have your questions in hand and any concerns you have. Please keep the stress down. Stress causes more problems for you. In the resource section is lots of great information, and questions you might want to consider asking.
Know we are here and praying you feel better soon.
Hi Tonya - oh gosh, I'm sorry you are here for your daughter. I'll have one more person in my prayers.
Thank you for the information. Yes, from all that I have read, I do feel blessed that my PCP was so proactive in sending for a MRI, the radiologist was able to identify it and my NL has sent me to a NS so quickly. I think I might have just found the best support right here! :) Tonya J. said:
Everyone is TOTALLY different. Chiari is tricky that way. The tingling and pain , aside from the headaches, is because of the syrinx. The good thing is that they found it! Most syrinxs will shrink after surgery. The flow of spinal fluid will be restored and this keeps the syrinx from getting bigger. 12mm is a significant herination but from what I've heard from others, it's not the size that matters. Don't be scared if you have to have surgery because it will help you. I pray that you have support. I'm a bit nervous because my daughter just had an MRI last night to check for a syrinx. I'm going to pick the cd up as soon as I get off today. I don't want her to have surgery for anything but if she needs it, I'm all for it! Be happy that you have a diagnosis because some people go through hell and back before they have a proper diagnosis. Hang in there! This site works miracles!
Tonya- the part you posted that i highlighted i disagree with because i had the tingling and pain but i did not have a syrinx. so it is possible to have these symptoms without a syrinx.
Tonya J. said:
Everyone is TOTALLY different. Chiari is tricky that way. The tingling and pain , aside from the headaches, is because of the syrinx. The good thing is that they found it! Most syrinxs will shrink after surgery. The flow of spinal fluid will be restored and this keeps the syrinx from getting bigger. 12mm is a significant herination but from what I've heard from others, it's not the size that matters. Don't be scared if you have to have surgery because it will help you. I pray that you have support. I'm a bit nervous because my daughter just had an MRI last night to check for a syrinx. I'm going to pick the cd up as soon as I get off today. I don't want her to have surgery for anything but if she needs it, I'm all for it! Be happy that you have a diagnosis because some people go through hell and back before they have a proper diagnosis. Hang in there! This site works miracles!
Really??? You learn something new everyday. From what I’ve read & learned from my daughters friend (he has chiari, syrinx, shunt, 3 decompression surgeries) is that you have tingling and loss of feeling because the nerve damage that the syrinx causes im the spinal cord. Sadly this boy can no longer feel his left arm, chest, hand or back. Tricky tricky chiari. Now that scares me because she’s been complaining about muscle spasms and pain in her left arm. I just assumed it would pass because she has no syrinx. It’s been a week now and I’ve witnessed constant spasms and seen her in pain. Geez, Chiari never ceases to amaze me.
Lisa W said:
Tonya- the part you posted that i highlighted i disagree with because i had the tingling and pain but i did not have a syrinx. so it is possible to have these symptoms without a syrinx.
Tonya J. said:
Everyone is TOTALLY different. Chiari is tricky that way. The tingling and pain , aside from the headaches, is because of the syrinx. The good thing is that they found it! Most syrinxs will shrink after surgery. The flow of spinal fluid will be restored and this keeps the syrinx from getting bigger. 12mm is a significant herination but from what I’ve heard from others, it’s not the size that matters. Don’t be scared if you have to have surgery because it will help you. I pray that you have support. I’m a bit nervous because my daughter just had an MRI last night to check for a syrinx. I’m going to pick the cd up as soon as I get off today. I don’t want her to have surgery for anything but if she needs it, I’m all for it! Be happy that you have a diagnosis because some people go through hell and back before they have a proper diagnosis. Hang in there! This site works miracles!
yes I am completely serious, i do still have that tingling numbing feeling in hands mostly on my left side which is believed due to a left shoulder/neck issue that i am dealing with. i also have nerve damage in the thorasic spine area,
along with cervical stenosis which is causing its own line of issues.
Next time you take your daughter into the neurologist/neurosurgeon disguss this tingling/numbness she is having with them- do not over look it as something that will go away.please do not do that with any new symptom that may come about in the future.
I don't mean to scare you i just wanted to make you aware that it is possible without a syrinx.
yes things can devolop quickly, and yes very scary,
but the good thing is you know what is causing it, that takes some stress off it,
have you been doing alot of research? the more you know the less scarey it will be,
also talk alot about it, it helps in getting your brain around it,
im sorry this is happening to you, but we are all here, and we understand, any questions you might have even if you think its stupid just ask, cause it matters to you,
Lily, I found this group to be the best place to get information from actual Chiari patients. My 15 year old daughter was diagnosed in August and had decompression surgery on Nov 10th. We just got home from the hospital last night.
A few thing I would say; I agree bringing someone with you to the NS is important. Also your choice of doctors and NS are is KEY. Do your homework on them! If you dont feel 110% confident and comfortable get a another opinion and another if necessary. I think a lot of people put their health care in a doctors hands and think well they are the doctor so they know best. Do your homework on them, you know yourself best and you are the one who has to live with whatever procedures they do.
There are great links on this sight and of course all the wonderful people here to provide help, support and share their experiences. We are here for you and wish you all the best!