confused

[Maddie85]

After waiting a year I finally pursued getting appointments with two neurosurgeons for opinions on my Chiari Malformation. One is with a Neurosurgeon at Mayo Clinic in a few months. I know Mayo treats chiari conservatively so I decided to make a appointment for a second opinion following my first.

The second doctor, Dr. Barth Green I wasn't expecting to get in with so quickly with. After I sent my records over a few days later they had me set up an appointment to be seen by him with another neurosurgeon prior to my other appointment. I was happy to get in but a bit surprised I was able to get in so fast.

Now am extremely nervous because I had a cervical MRI done without contrast two weeks ago and they are ordering me a cervical cine MRI with & without contrast.

I am scared because I have reactions to almost anything that gos into my veins including Iodine contrast. I tried explaining that to the scheduler but I dont think I have much of an option for them to look for blockage. On top of that they want a cervical ct scan and x-ray. I was wondering what they can actually see with the ct scan because I am thinking of opting out of having that due to both cervical MRI & CT in the past causing me extreme head pressure.

My husband and I are wondering if we should make the long trip to Miami. Its very soon and we dont know if the tests are worth it for me because of possible side affects & cost. We keep questioning ourselves that if the doctor asks me if I wanted to go ahead with surgery what should I choose to do? We don't know whether to see the Mayo neurosurgeon beforehand and then go to Miami a month or so after. I'm so confused on what to do and if surgery was an option what I should choose to do.

I have some days where I feel somewhat normal but other days where symptoms are extremely prominent. Those are the days I tell myself "what should I chooses to do if given that option??"

I know there is no easy answer and ultimately at the end I have to make a decision on either surgery or alternative treatment but if anyone has any advice on how to get through stuff like this, that would be wonderful!

Thanks guys
Maddie ^.^

[Maddie85]

Thank you again Pam, I have a few weeks to decide prior to seeing him whether i go or not, will keep everyone updated. good luck with your surgery!!

xx

[selmaS]

  I responded on the other thread...u posted a similar question....

[pamk5]

Hello!

Well the reason he is doing the Cine MRI is make sure your spinal fluid is flowing in the craniocervical junction.  CT scans show more of the bony abnormalities so possibly he is looking at any issues with your cspine.  I think I have heard the name of Dr Green.  I think you would be good to see him at some point.  I think the tests are necessary to get the rest of your answers.  As far as surgery goes..I think it is a personal decision. I have opted to have the surgery in a few weeks.  You have to keep in mind the reason for the surgery is not just hopeful relief of symptoms but to slow the progression.  I too feel almost normal on some days then I over do it and feel like I have been hit by a truck.  It is not uncommon for Chiari to cycle.  

The tests he is wanting to do will tell whether or not you have CSF blockage, that is going to be a deciding factor too on whether surgery is necessary. Have you had a MRI of your entire spine?  At some point they need to make sure you dont have a syrinx.  I think after you have the answers you will have an easier time making the decision.  

I wish you the best and peace with your decisions.  

Pam