Tonsillar descent????

[lisalailey]

Bit confused with this. Is tonsillar descent somthing which we all get with our leaks, does it come and go with leak. does it cause other problems, If so what. I dont know if I have it but I have noticed when my head is bad usually in the evening being worse. I find it difficult to swollow. Ive tried looking up stuff on the net but keep getting Chiari malformation. Am I right in thinking it is when the tonsils are pushing down onto the spinal area. sorry not too up on this. :confused: Ive also noticed up the left back of my neck area it has been getting really painful do you think this is connected to this.

[mot]

The only way you can tell if you have this for sure is by having an MRI with contrast.I have it and do not have any swallowing problems. It depends how far the tonsils have descended. Not all leakers get brain descent but if you have it Schievink has had far better luck fixing these types of patients than others.

M

[Concerned Gal]

Okay, my understanding based on my own learnings/experience is that not everyone who has a leak gets it or is recorded as having it. I guess it would depend on the pull/drain down on the drain and probably whether structurally you have enough room in the skull for it to move around much anyway (ie bigger skull). Your understanding is correct the brain is pulling down on top of the spine.

I also understand that the symptoms would be fairly much the same as Chiari Malformation. Chiari is when you are born with it - so your brain is structurally set up that way, where tonsillar descent is pretty much the same time but acquired and does have the potential to 'bob around' in there depending on pressure levels so I guess the symptoms may be less (?) or not as often as a standard Chiari.

I had a tonsillar descent visualised on my MRI for about 18 months (7mm) however the latest MRI didn't show it - i had been fortunate enough to be functioning (but still with some symptoms) for awhile prior to the MRI. Who knows whether it had just moved up for the day of scan (?) or whether it had been up for awhile (?) or whether its still up (?).

When I was suffering with chronic leak symptoms and had a visualised descent i quite often had a bad pain in the right side of the base of my skull (where you have those bumps in the base of your head on both sides). I used to lie there and massage that area to try and get some relief. It was a separate sensation from leak pain.

I did note several times difficulty in the sensation of swallowing. I was able to swallow but found it uncomfortable and difficult. Kind of like a 'choking' sensation. I still sometimes get that feeling but probably not as much at the moment thankfully. (i did a thread on this awhile ago if you did a search you might find it)

I often wondered as well because MRIs are down in the supine position whether a lot more leakers have tonsillar descent then is recorded. Only because it makes sense (to me) that when gravity isn't pulling it down, technically it could float back up as soon as you lie down and not show.

hope that helps

[fallingbear]

howdy yall,
[ptsm csf leak, complete nutter,,]
seems since my fall, i have had thickness at the back of my throat!
did not know why?
when i tried to swallow it was sometimes difficult, mostly fluids strangely!!
this made it hard if i was alone, cause there was no one to hit me on the back, when it got stuck!!
sometimes it is so bad, i have to stick fingers down throat and vomit!! not much fun,, but better than watching some old british movies late at night!!
now my question is, it is not good at this time, and i have noticed a burning at the back of throat??
is 'csf fluid" slighty acidic??
or is this being caused by something else??
replies muchly appreciated
fb

[wobbles]

fb:
leaking can cause the swallowing problems that you mention when the brain sags and puts pressure on cranial nerves involved with swallowing. Other autonomic reactions are also common with this sag.

I don't know if CSF is acidic but it can be irritating to tissues that aren't supposed to be in contact with it! Early on in my leak experience my doc noted that my throat was quite raw on the right side only. This coincided with CSF draining from my right nostril. When the CSF stopped draining...the irritation cleared up quickly.

hope this helps-
wobbles

[Sally Girl]

When Anna "leaks" fluid from her eyes and nose, she said it just burns. And when it runs down her throat, it chokes and gags her. She spits it out if it gets bad. She said it tastes salty. She has coughing and acid reflux issues.

Cheryl

[burk]

OMG! prior to my blood patches I had horrific R sided neck pain, base of the skull exactly where you describe! It did relieve w/ lying flat and gentle massage. If I had the descent why on earth did not anyone catch this!! after all the MRI's, CT's ect. this is crazy!! I am not a doctor nor do I want to be one but I tell you if it was not for this site and all of you I am afraid of what direction i would be going!!! I dont know why I am so shocked but OMG! I want to tell these doctors to WAKE UP! I spent an entire day calling medical facilities in my state looking for one that specializes in leaks and found only one and I actually did not find it as his name was mentioned here a few times. I will say a couple NS's did say they did not know much about it and that I would be better served elsewhere which I was greaful for but some said "no, I dont know alot but come on over and we can help you!" wondered if they would have paid for it too? sorry for the venting.

[fallingbear]

fb:
leaking can cause the swallowing problems that you mention when the brain sags and puts pressure on cranial nerves involved with swallowing. Other autonomic reactions are also common with this sag.

I don't know if CSF is acidic but it can be irritating to tissues that aren't supposed to be in contact with it! Early on in my leak experience my doc noted that my throat was quite raw on the right side only. This coincided with CSF draining from my right nostril. When the CSF stopped draining...the irritation cleared up quickly.

hope this helps-
wobbles
hey thanks wobbles,, guess i am in a spot of bother then!
havent eaten much in 2 weeks,, swallowing,, and unable to get proper medical support,
because this was caused by workplace accident, and gov/insurance injury companies, deny me everything, and spend huge amounts of money, trying too get me off weekly payments!! and want me to go through another 8 years of court procedures, just to get medical help!!
oh australia,, the lucky country!! this is so embarrasing!! [but dont worry,, we spend millions, to win a couple gold medals at olympic games]
it is , too far and hard on me too get too neurologists 300klms!!
i am hoping to move interstate in 3 weeks,,where i will be near all medical services,,
so i have a plan,,will move closer to bigger city, and book myself into major hospital,, because i have had this since fall,, 1996, but of late it is far, far worse,
so can i hold on untill march? that is the question??
i will write and let you all know,,, if i dont make it,, and kick the bucket,,okies,,
i am learning so much from the net,,
thanks for your efforts
warm regards
fb

[lisalailey]

Hang in there falling bear, so sorry for your situation. Hope things start to get better for you. Here in the UK I'm very close to my local hospital but being in the UK things are very S.......L.....O.......W I think the theory on the NHS is if they make you wait long enough you wont be around to need treatment!!! still waiting on 2nd blood patch. no news yet.

[fallingbear]

thanks lisa,
it is quite frankly blatant and deliberate, denial of proper medical care!!
the victorian gov hides behind private insurance companies, and they are basically hindering any real proper medical support i should have had years ago,,
if i suddenly do kick it,, then i would call it manslaghter,,
because what else could you call it,
all over money,
dont mean too change this post, but have no where else to express disgust,?
if i can do it i will be putting tape recording of the hour i spent this week, having my home pelted with rocks, by the neighbours,, simply because i have a disability?
it is frightening,
the police are supporting them, and it has been going on for 2 years now, with fire, smoke, property damage,
the neighbours over the road, said they were like a pack of wild animals!!
the police are covering it up, because they are friends of the family!!
so, i am turning to this forum to at least bear witness, to what happens to someone, with a severe disability, in australia!
i have complete pics, tapes, etc,
seems no one here cares one little bit??
a country is measured by the way it supports the old, frail, and disabled,,
i will post this latest recording?
maybe wrong place?
forgive me
fallingbear

[burk]

I am so sorry to hear of the all problems you are having! its hard enough to be sick let alone have to go through what you are going through! hang in there and remember you are not alone!!!