Well think I finally figured out where to post, so I am going to give it a whirl :) I was diagnosed with Superior Canal Dehiscence (SCD) in August of 2008. At that time there were no drs here that dealt with that issue, so I was sent out to Ontario, Canada to have a specialist look at me there. He did a CT scan, and came back and told me that there was nothing wrong with me except anxiety. I knew there was something, so I begged my ENT to send me to Baton Rouge to see a dr there who specializes in SCD. He confirmed that I have it, and also told me that I have thin or dehiscent bone between my carodit artery and cochlea, and large vestibular aqueducts and a dehiscence in both ears. I also had abnormal brain responses to some of the tests that he did, so he recommended that I have an MRI when I get home. I did have one and sent it out to him and he told me that I have a 15 mm cerebellar tonsil herniation, which they didn't see here. I asked for my MRI to be looked at again, but the radiologist refused..go figure. However, my dr looked at it with a neurosurgeon and agreed it was there. I am still waiting (since nov) to get an appt with a neurosurgeon..it could take forever! I ended up in the hospital 2 weeks ago with a horrid headache at the back of my head, going right across from ear to ear..thought i was going to die, and I think at some point was wishing I would. The ER dr didnt have a clue what I was talking about, and made an appt for me to see a neurologist in Sept. I think its a waste of time..I need to see a neurosurgeon not a neurologist..have to wait and see I suppose. Does anyone else here have SCD? People that have SCD have a higher incidence of having SCD, and both give the same symptoms. At most I feel completely alone with all this, with all the things I have rare, and I don't know much about Chiari except for what I was able to read off the internet. Just thought I would share all this :)
I don’t know anything about SCD, but I think you are right about needing to see a NS. My neurologist is completely useless when it comes to chiari. I’ve stopped going to him. My NS on the other hand is recommending I have the surgery. I hope you can get to a good NS soon. Good luck to you.
We have medicare, we can't make an appt with specialists here. They did google it when I was in the ER, and wanted to do a ct scan. I refused the ct scan because I have already had 4, and hoping that one day I will get an appt with a neurosurgeon and he will do the appropriate tests. SCD is another rare thing to have, along with the thin bone between the artery and the cochlea and large vestibular aqueducts. My head is a mess. I am not sure how the Chiari was missed..but I was told the radiologist is told to look at what they were asked, and that's it. They were apparently looking at my 8th cranial nerve (the balance nerve) because of my balance issues the drs thought maybe it was damaged. When asked to take another look at the mri, the radiologist refused, perhaps their nose was out of joint that 2 drs in the states saw it and they didn't. With the costs of an mri, you would think that they would just take another look and confirm instead of me having to have another one and waste medicare money. We don't have private insurance here like in the States, so we just sit and wait for an appt. I did get a letter yesterday stating I have an appt with a neurologist, made by the dr in the ER, but that is not what I need to see. The appt isnt until Sept..blah..and the ER dr told me that it could take up to 4 years to see a neurosurgeon. My ent told me that surgery probably wont be done anyway unless something drastic happens (like going on disbility and having my freedom robbed from me isn't enough) and due to the other things, I will never get relief from symptoms..that is what my ent said. Our medical system really sucks here!
Beeba said:
First welcome!! Sorry I am behind in that. I don't know anything about SCD - I will research but I really have never heard of it - but that means nothing be ause I had never heard of chiari either. If the ER drs don't know what you are talking about - give THEM the advice I got in the er which was go google it. Then tell them to come back and talk to you. A 15 mm herniation is signifigant and not really sure how they could miss it. Waiting until September will be a big mistake and could allow things to progress. Being in Canada I know things work differently - but this is ridiculous - you are not in some third world country. There has to be a ns who knows about these conditions. Perhaps you can call your insurance company and explain your predicament and get a referral through them. Don't take no from the first pion that answers the phone - work your way up to a manager in case management. Best wishes and let us know what goes on today.
Ty..I would appreciate any help..I would like to know if there are any drs here in Winnipeg that have experience with Chiari. i just don't want to go to anyone and then get poor care. I figured it would be better to treat it as well, but I am thinking that I am put on the back burner (such as I have been with SCD) because perhaps there aren't any specialists here that do deal with it. I keep checking my mailbox thinking that maybe today is the day when I hear that I have an appt..blah
Ty!!
Thank you!
Abby said:
Here is a listing of recommended WACMA Canada doctors
Dr. Rudolph Arts
Neurologist
Barrie, Ontario
(ph) 705.721.1060Dr. Paul Muller
Chief of Neurosurgery
St. Michael's Hospital
Toronto, Ontario
(ph) 416.864.5590Dr Hurlbert
Neurosurgeon
Foothills Hospital
Calgary, AB, CanadaDr. Rutka
Neurosurgeon
Sick Children's Hospital
Toronto, OntarioDr. Ramesh Sahjpaul
Neurological Sciences
339 Windermere Road,
London, Ontario N6A 5A5
(ph) 519.663.3706
(fax) 519.663.3753