Basilar Invagination (kink/bend in brain stem)

[kwalker0004]

I sent MRI disc to my uncle, who has been a retirement for a year. But before he retired he specialized in Neurosurgery as well as Chiari once his own daughter was DX with this condition. We skyped foran hour while he went through the images of my MRI scan. He stated everything the other two NLs plus the Neurosurgeon I saw had stated but then he threw out something I never heard come out of neither of these doctors mouths. He showed great concern for the fact. That the MRI showed a basilar invagination. Of coarse my first time ever hearing this term, I asked what in the world is that. He pulled the MRI image up and pointed to what looked like a kink in the Brain stem. I asked should this be a concern. He said sure because it could mean compression. But he had to go and couldn't explain what he meant by the world compression. Is this the compression of the bone structure ( I forgot the name but it begins obo), compression of CSF, or some other type compression? I got called back to see the neurosurgeon this coming Friday these will be the questions and concerns I will ask, so any help is appreciated or if some one can explain a little more about this condition. Is it present in all Chiari patients or just some? Can it worsen the symptoms you already have? Can this get worse or progress like Chiari? Thanks

[kwalker0004]

Ok the location is a little hard to explain as my uncle didn't explain really what. He meant. But I do see that the brain stem is not straight and I have posted a picture under the album of brain MRI if this will help you. He also has the measurements of the herniation as I forgot to delete them since they are not exact measurements. He was doing rough measurements but came up with about the same as the NL did 6 mm, so I'm not worried about that. I was just worried about the BI.

[selmaS]

  Yes that is something to focus on and to make sure the NS u go to notices it as a cause of many of ur issues...

Once u have a CINE MRI it will help too as u will want to know if u have CSF obstruction...

Both ur Chiari DX and BI are something to keep pushing for answers on.

I will look, but I am not medically trained so I doubt other then the kink I would not be able to discern what is what .....I had my surgery almost 5 yrs ago so looking at MRI's has been a while....

[kwalker0004]

Oh I know. My uncle just pointed it out. He really can't treat me do to the fact he is retired and he's blood relative. But he did get interested into this when his daughter was DX and died from this condition when the Dr only said it was mild. Rather it was a direct cause or not idk. I was to small to understand it all. I was just there and saw my favorite cousin in fighting after a terrible car accident. The Dr said to many big words that for my age I didn't quite understand. All I knew was I was about to loss my best friend.

I was just wondering why it took a retired neurosurgeon to see this? Why wasn't brought up when I saw them three of them and I understand one of them was probably tired just finished a surgery so I can pass his off. But the other two I was their first patient of the day. I wonder what made them look past it.

I will continue to push for the answers. The answers that sound right to me. My cine MRI is scheduled for next month, I am going to see if my insurance will allow me to travel to another state. But my journey is far from over. Should I start all over and find a doctor who knows or specializes in both of theses conditions? Or should I just keep with the NL that I have now who promises to come and visit me every month and work with my PCP and me?

[selmaS]

  Take copies of ur MRI and send them to a Specialist....check with ur INS and see what they say and mayb u can get one to consult with ur Drs....

For some reason unless the Dr is experienced with Chiari they do not find these other issues....and they are related...and this is y I stress that is who u get to work with u....

[kwalker0004]

My uncle is getting in touch with my insurance and see what is and isn't allowed. I called the chiari iinstitute of new York as well as a specialist in Ohio. My father has copies of mri disc and will be looking a doctors in Florida in or around Tallahassee/Miami(if need be). He will send any forms that will need to be filled out and I will send them back. I know this gets frustrating        but it wil hopefully be well worth it. I just know I need better answer then what I have been getting. So I will be doing any thing and everything in my power to do this and I will never give up!!!! Thanks for your help

[selmaS]

  No worries ...do keep us posted on ur progress find a Dr.

Good Luck <3

[kwalker0004]

Well they see that I have BI but they won't do surgery because they dont have neither specialist on their team. So guess back to square one but they did give me a few recommendations one from Baltimore who will come to meet his patients before they decide to whether or not to keep seeing him. I will call him Dr. R for now as it seems I will never pronounce his name but according to NS in my little tiny city he comes a nice person and he knows a great deal about both of these conditions. But he won't be able to see me until December!! Which is fine, he will have his schedule cleared by then. Then he will be ready to to accept new patients. Plus it will give me extra time to get all related conditions and test required out of the way before I go to see him. And they gave me a recommendation for a doctor called Dr tew up in Cincinnati, Ohio. I guess I will be doing research on him and see if I could be fit into his schedule when I come up there for a 2 week vacation. If not then I will stick with bmore Dr. Finger's crossed:-)

[selmaS]

  Sorry but I am confused ....which location didn't have a Dr capable of helping with BI? U mentioned calling several places and I know that at least one on ur list does deal with BI....not sure about ur INS tho....

Dr Tew is a well respected Chiari specialist....I have heard good things about him.

[kwalker0004]

I live in Pocomoke, went to the Dr I have been seeing since diagnosed which is in salisbury, MD. He's a great NS,his name is Dr. Larry Shannon, but he doesn't deal with BI and the NS who is on his team that does doesn't accept united health care. So his PAC gave me two doctors she thought dealt with both conditions. One is named Dr. Rizzoli from Washington, DC but I haven't been able to find nothing on him that actually says what he specializes in beside NS or no patient reviews. And Dr. Tew which is from my home state and I have lots of family there ready and willing to help if need be. I would be able to travel there since my family could pick me up. But my sister is looking into what type of insurance he takes it if he will work out some type of payment plan. I just Dr Shannon was afraid to do decompress the skull then have the brain stem to compress even wider and his team member would refuse to help fix it. Which is okay and fine but I just wish i knew this from the gate. So I knew to look for a doctor who knew about both conditions instead of just one condition. Frustrating at the least but at least I haven't found one Iliked yet!!

[selmaS]

  Oh Ok, I thought u contracted the others u mentioned above and none of them were able to help, hence why I was confused....these are names u did not mention b4.....

  I know it is frustrating since we do have to look to ALL related and non related conditions in order to be treating the right one.....and find a Dr willing to rule them all out to know which one is causing the most distressing issues....and which will give the most benefit to touch or leave alone....

Never heard of that Dr R u mentioned and I looked him up and specialty lists general neurosurgery....so not a Chiari specialist. in my book neway...lol...

[kwalker0004]

Yeah thats what I said once I looked him he just looked like a general, as of the other two I have been two, though dr Shannon has had 5 years experience with chiari he's just not quite a specialist yet. I trusted his opinion and he did help me out some so now off to look into Dr. Tew. I have contacted all dr s Imentioned besides Dr. Tew and Dr. R. But Dr R is off the list now. So Dr. Tew is the one I will stick with. I not changing my mind. I just hope him and I get along great. I just did some minor research on him and he seems to be a really great person. Someone I can connect to. So I will book an appointment for when I do go back up there and get things rolling. Should I still have the cine. MRI and the Mri of the spinal cord as well as the CSF flow study done?? These test were schedule before I decided anything, I just dont see why canceling them would help. I mean if they find anything serious I could take them up to Dr. Tew and he will be able to decide what to do right and less testing right?

[selmaS]

  Yes, if u have an RX for one, deff have the CINE and ne other MRI's u can as it will only help the NS determine what is going on all the sooner.

Just remember to request copies of the MRI and the report when u  sign in for the testing.

[kwalker0004]

The place I go to usually hands you the disc, I didn't know that you could also get the reports as well until I found this forum. Do for now on I will be asking for the reports as well. Is it necessary to also have a CSF flow study done if u get a CINE done?

[selmaS]

  CSF flow study is a CINE MRI...they are one in the same.

I said get all MRI's offered not realizing that u were calling them separate MRI's.....

[kwalker0004]

Lol see the PAC mentioned CSF flow study and I said MRI Cine she said no I never heard of that. I said it studies the flow of CSF as the heart beats CSF is pushed one way and when it relaxes it flows the other way. She said its not the same. So she schedule it for me its all the way in bmore but if I have a cine set up closer to my home and they are the same thing I should just cancel the one in bmore. Would make sense to me. I thought they were the same I just didn't want to sit and argue yesterday I felt like ten birds were all trying to get out of my head at once. So not fun.