I'm wondering, those of you who had surgery, how long after meeting with the NS were you scheduled for the decompression? I have a pacemaker, so I can't have any MRIs (was diagnosed using a MRI that was done before my pacer was put in). Do you think that would keep the NS from doing the surgery? How can he follow up after surgery without being able to do an MRI? Will he be able to tell if there is a syrix?
Any ideas, suggestions, information that I should know going into this?
Thanks!
Well it took awhile to find a NS who 1 i trusted 2 knew chiari 3 didnt give screw ball off the wall answers..LOL once i got a real Neurologist who was a chiari specialist my decompression was scheduled roughly 4 weeks out (mainly due on their scheduler screw up but it was OK because it gave me more time to get things set up for my sons school)...
As for your other question I'm not sure what they do for people with pacemakers I do know they always ask when I have an MRI about one so I always thought ppl could get an MRI with one...So I am not sure, so it would be a good question to ask Maybe then can do some other specialized xrays or perhaps a ultrasound.worth asking about and I would be really curious to know the answer so when you have the answer if you wouldnt mind sharing I am sure others would be interested in knowing as well.
sorry i cant answer
Hi...
How did your appt go??? A syrinx will show up in an MRI....Sorry, dn't know anything about the pacemaker deal.
let us know what happens and what the dr. says.
Peace,
Lori
After surgery, your doctor should be able to use CT scans to check your progress. That's what my neurosurgeon does since I have a shunt and can't have MRIs very easily either. I can have them, but the magnets in the machine mess up the setting on my shunt and then I have to have it adjusted. He always tries the CT scan first to see if it shows what he is looking for.
I was diagnosed February 19, 2008 and had surgery on April 30, 2008. It didn't take long after I got all the MRIs done and scheduled the pre-op appts and surgery. Good luck and keep us posted :)
Carla
Thank you for all of the replies and support. I had pretty high hopes for this appointment, I suppose that I thought he'd get me right into surgery and I'd be feeling well in no time. I know, logically, that it isn't that simple but I did see this as my best chance for an answer.
However, the NS is certain that my problems are not related to Chiari. He said that my herniation is barely 5mm and he wouldn't even really consider it a Chiari malformation. He isn't going to operate, obviously, and I'm back at square one.
I don't know what to do now. This NS is one of the best for Chiari, so I don't know if there is a point to trying to get a second opinion. He was very nice and seemed to want to help, but can't. I'm beyond frustrated, I really thought that today was going to bring answers and be the beginning to feeling well again.
Melinda,
I cannot stress enough how important it is to get a second and third and so on opinion!!! Is your NS a specialist in Chiari??? Because if he is not, you need to be seen by one who is. I was told by two regular NS the exact same thing you were told and then I ended up going to the Chiari Institute and was told it was very imparitive that I have surgery becuase my Chiari was in fact very bad. Along with Ehlers Danlos and Craniocervical Instibility. I had the decompression and a craniocervical fusion because of how bad it was (on Aug 4th, 2011). I would ask you to absolutely, most definitely get a second opinion by a NS who specializes in Chiari and related disorders. I would undoubtedly recommend Dr Bologonese at The Chiari Institute of Great Neck, NY. They are wonderful and truly experts.
I had a spinal cord stimulator implanted November of 2010, so I as well cannot receive MRIs anymore. If your diagnoses is clear from previous MRI's there should be no problem in having surgery if needed. My doctors worked around it with Cat scans and CT Myleograms and x rays. If you see the right NS they can definitely work around the whole "no MRI thing," just as mine did. Again, I cannot stress enough how important it is to seek another opinion. I was told the same thing by a previous NS and if I would not have gone to the Chiari Institute and had that much needed surgery I could be dead or paralyzed due to the severe brain stem compression i was experiencing.
You must continue to persue further help in this matter, regardless of what one NS says. Let me know if I can help you in any other way. I would be glad to give you any needed info on The Chiari Institute, the surgeries i had, the situation of not being able to have MRIs, or anything else i can do to help!
I wish you the best of luck and please let me know what happens!!
Marisa :)
Thank you, Marisa.
The NS I saw is a Chiari specialist, Dr. Ellenbogen (Seattle). He said that he doesn't usually operate if the herniation is under 7mm and he doesn't think my symptoms are Chiari. That's part of why I'm so discouraged, I guess, he is one of the best. If this isn't Chiari, that is fantastic, but there is still something wrong and I need to know what it is. I'm going to meet with my PCP and NL again, see where we go from here. I really appreciate your support and any information you have. I feel really lost. I just had so much hope wrapped up into that appointment and him being able to fix this.
Hi Melinda,
I didn’t see this discussion before I sent you a message. I’m sorry to hear that it didn’t go as you had hoped:( Even though he is a Chiari specialist, it would be good to get a 2nd opinion. From what I’ve read the amount of the herniation shouldn’t be the deciding factor. It should be based on the blockage of CSF, which can only be determined by a cine MRI. Did he offer to do this test? I’m a little discouraged about going to see him myself now. I don’t know how big my herniation is, because I never got copies of my brain MRI. I’m hoping to get the copies this week. I’ve heard good things about Dr. Oro in Colorado, if you wanted to get another opinion. If it’s not Chiari causing your problems, I hope you find a doctor soon that can figure out what it is then. There has to be a reason that you feel the way you do. I’m so sorry that the appointment left you with more questions, instead of answers:(
Crystal
Hi Crystal (I replied to your message before I saw this),
Please don't have second thoughts about seeing him. He seems very compassionate and genuinely caring. I don't mean for anything I posted to be a reflection on him in a bad way, I just was hoping for an answer and there wasn't one.
I have no complaints about him at all. PLEASE don't be discouraged! Whatever is going on with me might not have anything at all to do with Chiari. That doesn't mean that he can't help you, you know?
Melinda,
You are right…every situation is different. Your experience will help me to go into the appointment with more realistic expectations. I was discouraged, because I don’t know if I have a large herniation or not. So, I was worried about taking the 5-6 hour trip up to Seattle to just be turned away. Like you, I have all my hopes wrapped into seeing Dr. Ellenbogen. I have syrinx’s througout my spine, so I can’t imagine that he would think I wouldn’t be a good candidate for the surgery…but who knows. It’s not that I really WANT to have surgery…the thought of surgery terrifies me…but, I’ve tried everything else and I’m only getting worse. I’m sorry that he wasn’t able to help you:( I hope you get answers soon!
Crystal,
I know exactly what you mean. No one (I would think) wants surgery, but we all want to feel better, whatever that takes. I would think that having a syrix would make a big difference in what happens.