looking in back of throat

[teeners]

so i have had a lot of problems with my cranial nerves including loss of gag reflex, changed sensation in the mouth, trouble swallowing (feels like mid swallow i stop swallowing or forget how to finish) and control of my soft palate (i can control the movement of the upper mouth and uvula by clicking my ears). one thing i have also noticed is i can easily see the back of my throat bc i can control my tongue to settle very low so i can see my throat (as weird as this sounds, my doctors have all been curious about my gag reflex and soft palate). Anyways, i noticed that at the very back of my throat, i can see a bulge which moves as i move my head. does anyone else have this? is this the herniated part of my brain or my cervical spine?!

[linnielou232]

When I read your post I couldn't believe what I was reading because I have never heard of anyone else on here or Dr's confirm what I deal with also.  I have had my surgery and recovered, but now I deal with numbness in the mouth, my tongue has a weird feeling, and my mouth gets raw.  After posting this I'm going to look in the back of my thoat, but I am so flustrated and getting so depressed because I don't want to eat, I don't like to talk a hole lot any more because it hurts my tongue.  I also have the clicking in my ears which all the Dr's I have gone to has never been able to tell why this happens they just look at be like I am nuts.  I have been holding off going to the Dr., but you helped me decide to call and get this looked at.  Hoping you have a better day tomorrow.
Linda :)

[Dicon]

I had to post the photo on my profile page if you can go there to see it. Not sure how to post here in the comments.  Let me know if you have any ?s  Good luck to you!

[Dicon]

Yes, it literally punctures through the back of my throat.... it is white bone.  I'd say it's definitely NOT normal. It only happens when my head is in certain positions for a while so it's got to be that my c-2 vertebrae slips out of place (a PT has evaluated that 2 ligaments that hold c-2 are lax) and it must put pressure on my throat and eventually pokes through. I've taken pictures of it to show Drs, who refuse to believe it happens even though my husband has witnessed it himself as well and tells them. I will try to see if I can post the picture so that you can see it. it's awful.  When it occurs I get the most awful neuro sx so I think that as c-2 slips out of place it must also migrate upwards causing compression of the brainstem.  My ENT evaluated it, saw the bone and confirmed it's my c-2 vertebrae but the NS won't believe him either. He seemed to immediately know what it was and told me he's familiar with it b/c most times it means you need to have a fusion of c1-2 which he's assisted with b/c they access it through the back of the throat.  Infuriates me that nobody will believe me and figure this out. It's been almost 2 yrs and I've gotten far worse.  It's probably one of those 1 in a million type cases but it doesn't mean it's not real.  I will try to post the picture.  Good luck to you!

[teeners]

when you say it appears as if a bone is sticking through the back of your throat, do you mean you actually see the bone? like it ripped through?! when i look in the back of my throat and turn my head sideways i can see a bulge which would make sense its a vertebrae but i dont know if this is normal for ppl when they move their head

[selmaS]

  U may need to travel to get to a Dr if u can not locate one in ur area...I had to...I first went out of town and that did not help, so I went out of state and finally found a Dr that was able to help me....I am sure u will find the right one for u as well.

I also know how frustrating it is, but it is better to be let down and frustrated then tricked to believe a Dr can help when it is really not his area of expertise.Time and patience helps in all areas of this condition...getting a DX and post op recovery.

[Dicon]

No...I've had several xrays and Drs are adamant they are fine, yet a PT has done several evals and can literally feel the laxity of the ligaments and says I'm unstable.  No they haven't done the traction test....can't get a Dr to even feel the need to see me. I would love that test....it's exactly how I describe how I feel - it feels like I need a crane to pick my head up off my spine. it's so frustrating

[selmaS]

  No, they r both related to EDS so if u have one, I can understand u having the other as well....

Really, it doesn't show on the xrays?....have they tried the traction test on u?

[Dicon]

Do you mean that the retroflexed odontoid causes instability?  I can't get a NS to believe I feel upper cervical instability either and it doesn't seem to show on flex/extens xrays

[selmaS]

  Having a retroflexed odontoid that makes sense that u have instability...and most likely EDS as well....

Thank u for sharing this as I did not remember u or neone else having this issue....and the fact u mention  RO or BI makes sense.

[Dicon]

I'm not sure if the bulge in the back of your throat could be what I have but about 2 yrs ago I started seeing what appeared like a bone sticking through the back of my throat and was later confirmed by my ENT specialist that it was the vertebral body of c2 puncturing through my throat.  It has been a nightmare trying to get help for this though as none of the NS will believe it even though I've stuck a camera in my mouth and have pictures of it and my ENT checked himself during a laryngoscopy. The ENT said that in his experience it typically means that c1-c2 need to be fused b/c of some instability issue. Again.... can't convince any NS of this though.  It is painful when it occurs and I get the worse neuro sx ever. I am 100% convinced that the ENT is right. Still trying to find a NS to listen though.  In the process of all of this I've found out that I have a retroflexed odointoid and a 5 mm herniation of my tonsils so I believe it all fits together.

Best of luck to you!

[selmaS]

  We r all different, so it may not be considered a "normal" symptom, but it is not out of the realm of possibilities as nething we feel can be traced back to chiari as all our nerves can be affected and they can cause pain.

Ask to be places on the cancellation list....so if neone cancels for what ever reason u may get in sooner.

[teeners]

and is pain in the back portion of the tongue normal with this? gosh it causes weird symptoms! lol

[teeners]

i was supposed to see the neurosurgeon for the first time tomorrow... but they called today and canceled. said my appointment was squeezed in and they needed to reschedule me for january. im so concerned because of all of these new recent issues (shortness of breath, mouth sensations, swallowing problems)... but i guess 1 month shouldnt cause more damage to occur in the scope of chiari progression right? it's just scary not knowing the severity! i havent had a mri to see if my syrinx grew and my last brain mri was in june.

[selmaS]

  Hi...I posted to someone else's thread today about this very issue, but with compression and excess CSF build up the vagus nerve can be affected causing all the issues u listed.

I am not so sure about the tongue thing, but the rest, gag reflex, swallowing issues, and the cranial nerves.

As for the bulge u  can see...I do not know what that is, but I am sure a Chiari specialist can help u....have u had ur CINE MRI yet?