I had my first appointment with the neurologist yesterday and I felt good about it, I really liked him. He did not dismiss my CM as a non issue (as I have heard many others say their neurologists do). I have an 8mm herniation with mild compression of the brainstem according to an MRI that I had previously. He gave me some good advice and said he wanted to do more testing. He ordered a full spine MRI to evaluate for syrinx, meningocele, fistulas, etc. He also ordered ENG testing and a cysternogram. My only concern is the cysternogram, he said he is worried from my description of symptoms and how they started that I may have a CSF leak somewhere. This test requires a LP to introduce dye into the CSF to evaluate leaks. I have read several places that LP's can be contraindicated for chiarians. I asked him if that would be an issue and he said it shouldn't cause a problem and he felt we really needed to evaluate for a leak. Does anyone have any experience with this test? Did you have any issues or problems? Thanks for any information.
By the way, I'm sorry that I have been MIA on here for quite a while, it took forever to get in to see the NL and life, work and raising kids gobbles up most of my time. I hope all of you have been well.
Hi...the reason they tell us to avoid LP's is bcuz there r so many out there that r not aware of chiari....and to make sure they do.
If they r aware and draw slowly u have nothing to fear...and many times a LP is medically necessary for those with chiari and can be done correctly.
Since u have a Dr that seems to know about chiari I am sure he also knows how to avoid an issue with a LP with a chiarian.....
I had an epidural when I had my DD and had a leak...it was awful....but it sealed up on it's own....
When u find a Dr u trust, trust him....I know with all of us saying do not have a LP it is hard to know what to do...but, ur Dr is being thorough and u want and need that...and u feel he has an understanding to chiari...so trust that...just make sure the tech doing the LP is as aware of ur chiari as ur Dr....
Thank you Selma, that makes me feel alot better about this. I also mentioned a CINE MRI, but he did not order that. I suppose I will go with the tests he ordered and discuss it with him again at follow up if we haven't found any other issues that need dealing with. Has any here had a leak discovered (vestibular or sinus, etc)? Do you have any information on what is required as far as procedures to repair them?
Spontaneous CSF leaks r not all that rare, and can cause an onset of symptoms similar to chiari...however, I would not say that is a common thing to find in chiari pts .....as I have not met neone via the web that had that set of circumstances....but it does not mean it could not happen...
To repair a leak all depends on the size and location of the leak.....small ones r usually given bed rest , plenty of fluids and caffeine....while a larger one may require a blood patch right off and the rest....and if that still does not work they do surgery as a last resort to close a leak.
I am going today to have my spine MRI, hopefully the will not find and syrinx, meningocele, etc. I am still worried about having the cysternogram, I discussed my concerns with my GP and we decided to opt for a second opinion from NS before that test. I am happy to go see NS and if he thinks the cysternogram is warranted then I will probably submit to it. I just seems to me right now, that I have a 8mm herniation ACM1 and that my vertigo, headaches, tinnitus, fullness in my ears, etc. are likely a result of that. I don't want to have an invasive procedure that may make things worse chasing down a different possible cause. I understand the need to be thorough, but when you already have a very likely culprit, why go hunting zebras when it may cause further problems?
I know going and looking for problems that your not reallly looking for is flustraing. I was diagnosed with so many other issues before they finally found my Chairi. It is us knowing our bodies and trusting in our doctor's that is the main issue. At least your heading in the right direction to finding a solution to help you feel better. I'm happy to hear you like your doctor. I went to a couple before I found one I trusted. Especially having brain surgery it is something you don't just go through lightly. I wish you the best andd keep us updated.
Lol, yes Selma I think that zebra in the herd of horses is a better analogy to the situation we face. The NL that I saw is now leaving town to practice elsewhere, not sure when. However, it makes me glad I am going to NS for another opinion. I don't have a chiari speciatlist, but I have known the NS I am going to see for a long time (I work as a nurse in the hospital and have known him 10+ years). He is probably the best NS in my state and I trust him. I probably should have seen him first, but I wanted to start with NL because I am opposed to surgery at this time. He is the one who discovered my CM1 7 years ago after a near drowning incident and thought it may have contributed to me drowning. I guess I am somewhat afraid he will tell me I need surgery and I want to exhaust all non-surgical avenues first. However, I don't think he would push for surgery unless he thought is was absolutely necessary and I think he is probably the best person to tell me where I stand right now. Anyway, thanks for listening, wish me luck with my MRI today.
Just a word of caution...NS's can be tops in their field, but may not be well experienced with chiari...I found a few that did not believe chiari gave symptoms...so, just be prepared to also see a NS that specializes in chiari and compare what the 2 say.
Make sure u r checked for all related conditions- syrinx, in cervical, thoracic and lumbar spine...tethered cord, sleep apnea, other disk issues...vitamin and mineral deficiencies....and most important over crowding and a CSF obstruction.
I agree that all of that should be checked out, that is why I am having the c-spine through s-spine MRI with and without contrast today (I hate that IV contrast, makes me severely nauseous). I am also supposed to have ENG testing, of course the audiologist who did it here left so now I have to travel 130 miles for it. Like I said, I'm all for thoroughness, I just don't want a procedure that may do harm and may not be necessary. I am upset that my NL is leaving, I liked him. All I can do is proceed from here. :) If NS thinks I need surgery then I will ask to consult a chiari specialist as well. I also plan to ask about CINE MRI. Any other suggestions? Sleep studies maybe?
If u r having sleep issues and snore then a sleep study would be in order...u can do an in home study....google NovaSom....they do a 3 day in home sleep study and they also set up a pre sleep study to see if the oxygen is getting dispersed thru the blood properly.
Oxygenated I think it was called....lol....but all in home so the costs r lower....and much easier to sleep in ones own bed.
The other thing u should be checked for is Ehlers-Danlos...it is closely related to chiari and those that have it need to know b4 having surgery as it can affect recovery.
Well, good news. I had my MRI and there are no syrinx, meningocele, disk problems or any other problems in my spine or spinal cord. Next up is my appointment with NS. Hopefully with no syrinx or other issues secondary to my ACM1, I can avoid surgery and find a way to manage my issues with medication or by other means. I would love to be able to manage the headaches, dizziness, tinnitus, memory issues, brain fog, etc. by any means other than surgery. For me surgery is a last possible option and, atlhough I have my daily problems, I feel like I would have to be worse before I would allow anyone to perform brain surgery on me.
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