Hi...in addition to what u listed it can also be a symptom of GERD/acid reflux...many with chiari also have that as well....
May I ask, do u get an odd sensation when u sing too?....just wondering since u said it is like a lump feeling when u r emotional....
This lump sensation does come and go, so this is why I feel it may be anxiety...however, I do get the feeling that I need to burp when it is really present, so you could be right! As I have mentioned before, I have a 17mm herniation that seems to have room, with no hydrocephalus or sprinx. That said, I do get some symptoms, such as the throat lump, but also a dull ache has begun in my arms and legs (mostly arms and shoulders). This again, could be anxiety...I just don't know, and sadly, I don't think my doctors really know either, with the exception of the NS that I can't just run to every time some new symptom pops up that isn't concidered too serious.
Again, your imput is so appreciated!!
Oh, and as far as the singing...not really any strange sensations, sometimes a bit of a vibration, which is kina weird, I guess, haha.
I also have the lump feeling every once in a while...started a few months before my second surgery. It hasn't gone away, it sometimes makes me go into a coughing fit because whatever I swallow goes the wrong way. I have told my NS and my NL, but they did not seem quite too concerned about it, I guess, until it probably causes major problems like difficulty in breathing and swallowing?
@ Selma: funny you ask about singing, but the lump in my throat does affect my "singing"
Hi....when u say the lump in ur throat affects ur singing...what do u mean?
It can be GERD/acid reflux...or it can be chiari affecting u....
When it affected my singing, my throat felt like I had spasms...and my voice was gone, nothing was coming out....and it felt strange like when u cry or get emotional, this is y I asked this of Heather....I had no idea it was chiari and b4 I got my dx my DD thought I was just lip singing in church...I felt bad, but I could not get nething out.
My voice is just gone in the middle of some notes...then becomes all croaky...and then I "choke" somtimes when it is really bad...thus, I stopped singing. ;)
I seem to think, though, that it is just very mild at this point and am worried it will become worse as I grow older.
I am positive it is not acid reflux...and have concluded it is from Chiari. However, like I mentioned earlier, my docs aren't that concerned yet, he just said to give him a call if it gets worse.
That is how mine started...just spotty at first....and them raspy ...
I also had a cough that I would get if and when I laughed...I would start to cough then gag...it was awful...
What I don't get, is how can you have symptoms, such as lumps in the throat,bad singing voices, haha, or slight pain/aches in arms and legs, ringing and fullness in ears which my ns said are not a chiari symptoms, if the MRI shows lots of room around the Chiari herniation with no sprinx or hydrocephalus?? Anyone? Help!!
Hi...well, where did they look for a syrinx...did they do a full spine MRI?..Too many Drs only look in the cervical spine for a syrinx, but they can be found in the thoracic and lumbar spine...plus, u could have tethered cord, or a retroflexed odontoid...a related issue and all they r looking at is how long is the herniation...that is not the only factor in if u will have symptoms.
Did they do blood panels on u to check all ur vitamin and mineral levels too?
Thanks Selma! That was my biggest question, actually, whether they should look further down my spine...I just had a C-spine MRI in late January. It did not include my thoracic or lumbar! I will insist on this if these aching symptoms persist!
I believe I have some older posts from you with this type of info...I will definitely bring it with me to my next appointment -- I am tired of walking away from appointments with even more questions because all the answers have been so vague!
You are a great help and very knowlegable!
No worries...this is a huge problem as I mentioned they do not look beyond the cervical spine and a syrinx can be in ne area of the spine...and if u have tethered cord* u will have pulling down of the brain stem.....so, ur NS should be able to recognize if ur brain stem is longer then most, this is a good indication for TC*. Also many with TC* may also have a mild form of scoliosis....
And make sure they test u for EDS as well this needs to be done now as it can also be the cause of HA's and joint and all over pains.
Thanks Selma. At least now I know it could get worse and to just be prepared when it happens.
So yeah, now I know I am not imagining the "gagging" thing.
Anyway, there is still a lot of symptoms and manifestations out there that docs don't seem to correlate to Chiari, but us being the ones feeling and experiencing them and are actually communicating with each other (thanks to the internet), somehow unofficially establish these.
It is nice and comforting to know from these forums that we are not alone in this and are really not imagining these things.
It wasn't until I was post op that I realized much of what I had was chiari...and that it was a symptom...weird...but, we all have so many symptoms we r afraid to tell the Dr just one more, and figure we can deal with that, so I will keep it to myself....we should not have to do that... and when we do list what we r dealing with we r told that it can not be related and we r deflated and left to figure it out alone...
If not for this forum I have no idea how I would have figured out what was going on...so I agree with u there : )
Couldn't agree more!!!!!!!!!
You may have a retroflexed Odontoid. Ask your Neuro to pull your MRI and confirm this.
I had TC surgery 2 years ago and have lump in throat. Going to see if it is my retroflexed Odontoid.
Hi and welcome to the Chiari forum.
Do u also have a Chiari DX?,.....did u have that surgery too?
I had an issue with my odontoid as well....and yes some can have an actual lump in their throat from this....and some it just feels like there is one....
Will u be seeing the same NS that did ur TC release?When u have a surgery date add it to our surgery date thread....we post Prayer threads for those going in for surgery.
Hi and welcome to the Chiari forum.
HA = headaches
EDS = Ehlers Danlos Syndrome....EDS is a related condition to Chiari.