Tonsillar Descent in adults

[youngman1969]

My mother (in the UK)  is 65 and has suffered from dizziness/vertigo symptoms for more than 10 years. She has had two brain scans in the last 12 to 18 months and they indicate possible tonsillar descent which could be the cause of her problems which now include persistent headaches. It has been an extremely frustrating and debilitating problem for her and I have done some web research in desperation to find information that might help. From what I can see there may be a connection to Chiari Malformation but I'm not clear about this. Can anyone offer any guidelines or advice? Thank you.

[selmaS]

Hi Steve, thanks for sharing ur info....and I have heard of the Ann Conroy Trust b4 and I am going to add it so a page in the Health Pages for u  all in the UK :)


"selma"

[youngman1969]

Thank you Selma. All this information is really useful and I'm passing it along to my folks.

For info, I searched YouTube and found a guy in the UK who had made a 'before during after' home video of his experience with CM and his operation. There was no real detail in the video but I dropped him an email and he kindly came back with the following advice which I was very grateful for and which hopefully will be useful for my folks. (This was the clip, jus tone of many similar ones on YouTube):

http://www.youtube.com/watch?v=asuOf3U4ing&feature=related


His advice (may be useful for other CM sufferers in the UK):



Hi Paul,

I am sorry to hear about your mum, also I am sorry to say that your story is so much like all our stories for ACM sufferers. Plain and simply, GP's do not know enough about tha condition and seem to bury their heads in the sand rather than admit they have no answers.

Ask your mum, (or tell her if she is like my mum and doesn't like making a fuss), to ask her GP to refer her to Mr.Graham Flint at Queen Elizabeth Birmingham, Mr.Bob Redfern Morriston hospital Swansea or Mr.Tom Carroll at The Royal Hallamshire hospital Sheffield. He is/was my Neuro Surgeon and I would/did trust him with my life.

You are right about the tonsillar descent being another term for ACM. Basically its the hind brain hernia where the hind brain protrudes out of the skull along with the spinal cord.

Unfortunately there is very little research into the condition, but it can be hereditary.

I dont know if you have looked or are aware, but there is a UK trust called the Ann Conroy Trust, and they are trying to bring awareness to the neurologists and doctors.

http://theannconroytrust.org.uk/  the Surgeons above are all Affiliated to the trust.

Please have a look, and I am only too pleased to be able to help if I can.

If you have facebook my email is ***@****  you will be amazed how many people are in the same position as you and your mum and lots are on my facebook.

Keep me informed please.

Regards,

Steve.

[youngman1969]

Thanks Rod. Appreciate the feedback.

[selmaS]

Hi and welcome to the chiari forum.

Ray is correct and I have to echo is reply...ur mom needs to be seen by a true chiari specialist.

Too many drs over look chiari as a possible cause of these symptoms as they feel, she was born with it and it hasn't bothered her until now...what they do not realize is  it may have plagued her her entire life and she was misdx'd all the while...and it  just now has gotten worse....this condition is mis understood, mis dx'd and we have too few drs that r true specialists in this field.

Next ur mom should be checked for related issues as Ray indicated...CSF blockage, a syrinx, tethered cord, even an issue like Ehlers-Danlos is best to know at this point as it can cause set backs with surgery and recovery.

Ur mom is lucky to have someone advocate for her....it is so diff when so many drs do not believe how this condition can affect us, and then not to have family and friends that do as well, so ur mom is lucky indeed : )

We r happy to have u join our little family here, not so happy for the reason u had to seek us out.

"selma"

[rod44]

Chiari Malformation pronounced kee-ar-e. other names include Arnold-Chiari malformation, Arnold-Chiari syndrome, hindbrain hernia, Tonsillar Descent & ectopic cerebellar tonsils.

Your mother needs to be under the care of a Neurosurgeon, specifically  a NS with experience of Chiari Malformation. A full spinal MRI is recommended by experts to rule out related conditions such as Syringomyelia (Syrinx) a cyst in the spinal cord.
It is important to check for CSF obstruction.  

Numbness & pins & needles are common complaints with CM

Ray

[youngman1969]

Hi, thanks for posting a reply so quickly. Sorry, I should have mentioned that she has been through two GP's and numerous 'specialist' consultations and tests (including for cancer). They used to tell her it was caffeine and alcohol so she cut out both but it didn't help.She goes through good and bad periods but she has now suffered non-stop for nearly a year and it seems to be severe recently. When they scanned her brain just over a year ago they noticed tonsillar descent but had no advice about what to do other than that in severe cases surgery is the best option. More recently she had a repeat scan and they told her it had not become worse over the 12 month between scans which I suppose is good news. But her GP has failed to find a subject-matter-expert so far. The GP himself knows nothing about TOnsillar Descent, other than what he's read since meeting my mother.

I don't know if it's relevant but she has numb big-toes...

[jacmurphy]

Hi.
I've heard Chiari Malformation described in different ways and one has been 'Tonsillar Descent' But you should double check with your Mother's GP.
Have they said this is the cause of your Mother's problems?
Dizziness and persistent headaches are symptoms my son gets. (he has Chiari) along with other problems.
I think you really need to ask the doctors if they mean your Mam has Chiari and then work from there.