Anything new to add to this list? For the Aussie Chiarians, have any of you had any experience with these docs? Dr Bernard Kwok or Dr Charlie Teo, they both work from Prince of Wales private hospital in Randwick Sydney.
I am trying to help a friend who really has no family. She is a young woman and this has just suddenly been dropped on her. Here is what her brain MRI shows:
Clinical History; Ataxia gait and limbs as well as ossicular.
Technique: Axial T1, T2, fine section T2, DWl ADC map coronal T2 were performed prior to IV contrast of Gadolinium, After injection sagittal FLAIR, axial T1, coronal T1 with FAT SAT were performed.
Findings: The lateral, third and the fourth ventricles are norma! in size and a little low in position. The aqueduct is patent. The posterior fossa is small and the cerebellar tonsils is low extending down to C2 level measuring 2.5cm below the level of the foramen magnum. The subarachnoid space is tight and the spinal cord is kinked over the anterior margin of the odontoid peg moderately. The maximum kinking occurs a the cervical medullary junction. The internal signal of this region is however normal.
The cerebellar tonsils are grossly abnormal in shape into a triangular wedge in the
occipito-atlanto-junction. The occipito-atlantoaxial junction shows normal segmentation with mild dorsal kinking of the odontoid peg developmental^. The basal angle measures 137° being average.
The cerebellar folia pattern is mildly prominent. The petrous bones, acoustic canals. CP angles are clear. No restricted diffusion is seen. No abnormal enhancement is detected. The pituitary fossa, optic chiasma are normal. The white matter is also clear in all sequences. A polyp is seen in the left maxillary antrum 15mm in diameter.
CONCLUSION: Arnold Chiari malformation is seen with marked abnormal cerebellar tonsils through a tight foreamen magnum. The posterior fossa is also small and the fourth ventricle is a little low in position. The white matter is clear and no syrinx is seen in the upper cervical cord. The cerebellar shows a prominent folia pattern.
I hope I haven't crossed our boundaries, as this doesn't have to do with me directly, but she (obviously) sent this info to me so I could try to help her understand. I am not familiar with some of the items in her MRI, so that's what I'm trying to do. She also has a difficult time with the keyboard, so I am trying to be the best help to her that I can be.
If you understand more, please fill me in so I can pass it along to her. I did share with her the fact that I had endoscopic decompression and she said the two NSs she met with had never even heard of it. I am just concerned - for her sake - that they are actually CHIARI speciaists. One of the two of them is talking about removing the tonsils. Does anyone have any experience with this large of tonsils and were they removed?
On my dear young friends behalf, I truly appreciate any wisdom that can be shared.
HI Lori...I usually get a hold of one aussie member when we have newbie from over there for her to help them....I can try to get a hold of her, and she can offer what she has learned about the Drs over there.
Old school was to remove the tonsils....it is no longer done as it is felt that it is best to leave them intact.
U may want to have ur friend join here if for nething to read what is posted, and I will try to get Hursty48 to reply......but it is best, for ur friend to pop on so she can chat directly with Sue.
I gave her the link, along with a lot of info links. She is pretty much on her own, and that kills me, so... I "adopted" her! LOL!!! She's now my Aussie Daughter! ;)
Have you had a new member by the name of Fabiola? I don't know if she's come here or not. I kind of gave her a LOT of info to look at and Drs. to look into, as she was wondering about coming to the US for surgery...??? I will ask her again to join and maybe she can find Hursty48 and link up with her. If you get ahold of her, give her my email and ask her to send me a message so I'll have her email address, and I'll send her Fab's email.
I hope you're feeling well, love! Today I feel like I've been hit by a bus... head and body. UGH!!!
Lori, I sent a PM to Sue (Hursty48) and gave her a link to this thread....she will contact whomever she sees on this thread that needs help.....not sure if she has gotten the message yet, as I have not heard back....but she always does when she can : )
The list is not a referral, just a means to start researching Drs other members on here have been to and liked....if u find a Dr not on this list and like how everything goes with him/her, please add them to this link : )
I have just been diagnosed with a Chiari and have been recommended for a decompression. My main issue is with numbness, started in my leg about 2 years ago and now have pretty much spread all over. Seeing Dr Jerry Day in Wollongong and so far he seems good. I rang Rodney Allen in Sydney and was told that he would not see me as I already seem someone, so basically he doesn't do 2nd opinions because it wastes his time if you go back to your original doctor! I think this is the most unprofessional thing I have ever heard from a doctor.. and incredibly arrogant too.
It is hard to find Drs that do not have such high regard for themselves....and to find ones that will admit when they can not help.....they just give us a run around....instead of being upfront and honest.
If the original Dr is helpful....do let us know how all things go...as this list is not very big and the more helpful names on the list the better for those that come after you.
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