Hi all. So I have had two surgeries, the second was to repair a duraplasty leak. I had a decent 5 month period after recovering from a grueling infection after the repair surgery, but have been awful for the past couple months. I have been seen for silent/opthalmic migraines as they seem to think that is my problem and no longer chiari related. What I want to know is if an MRI with contrast can actually rule out a duraplasty leak even the most miniature one?? I still feel like something is not right and my symptoms are pretty similar to when I did have that first leak except less intense and my head isn’t bulging out like it did that time. The reason I ask this is because I had one done and they said its not a leak this time, but then I heard of a test called a cisternogram which after reading up on I learned seems to be a more specific test to show if there is a leak or not. I just don’t want to be assuming everything is fine if a contrast MRI can’t show a small leak?? Any help would be appreciated thank you!
Casey, I am just not sure enough to answer your question, I don’t know if the MRI can detect a tiny leak or a tiny fluid collection. I’m am sorry you are feeling so awful, and not getting any answers. It’s horrible to be in pain and to be told there is nothing wrong- the surgery was successful. Do you know if your post op MRI showed that CSF flow was restored? Have you seen the latest MRI report with your own eyes? Have you asked your NS about the cisterogram?
As long as you are still in pain you need to keep looking for answers whether it’s from a new NS or the ER.
I did great post op till month 4, then the headache came back but so much worse. I’m waiting to see a new NS to get diagnosed, but I’m pretty sure I have a cranio cervical instability. It is estimated that 30 - 40% of decompressions fail for this reason. Have you been checked for hypermobility? Are you flexible? There are tests you can do - google the Brighton test and the Beighton test.
Here is a link to a presentation about some of the different kinds of instability. I realize you may not have this issue, but if you’re still having trouble with no other answers, it should be ruled out.
For those of us who don’t get the quick answers or good results from the decompression, we have to look at our ordeal as a journey. Sometimes there is more than one problem that needs to be found. Keep hanging in there Casey.
Jenn
Thank you very much Jenn, the information came in very handy. Yes I am very flexible and can do most things in the tests, and have all but one of the symptoms listed in Dr. Henderson’s PDF on cranial instability. Like you, about 5 months after my surgery (2nd) I started feeling worse than before surgery and have been housebound since October (save for ER’s and hospital stays) with a multitude of inexplicable symptoms that everyone sloughed off as being “migraine related” when I had constantly expressed that I believed it to be entirely chiari surgery related. I am going to contact Dr. Henderson tomorrow and see about getting in with him. Again thank you so much, the information is beyond appreciated and couldn’t have come at a better time, I’m at my wits end. Best wishes to you on getting some answers/help as well.
Casey, The Chiari institute in Long Island also does a good job of screening for and fixing instability. That may be another option. When you send these doctors your information write that you are concerned about cranio cervical instability. BTW I think Henderson is at about a 8 month waiting list right now. I wear a soft cervical collar now (since June) and it helps TREMENDOUSLY with the headache- if I forget it before leaving to work by the end of the day my headache is really building. If you want to try it get one that is tall enough so that when it’s on it reaches from your chin and jaw down to rest on your collar bones.
Keep Hanging in there Casey- I believe relief is around the corner for you.
Jenn
Sorry to hear that you are feeling so badly. I am 3 months post-op and apparently have a CSF leak. My NS is telling me not to worry about it because it is small and will resolve itself (easy for him to say). He told me to go back to sleeping with my head elevated, limit lifting to 5-7 lbs. and no bearing down.
Can I ask what your symptoms were and why they did a 2nd surgery? Overall my headaches are better since the surgery, but none of my vestibular symptoms are (dizziness, vertigo, tinnitus), but I have had them a very long time. The back of my head is a bit puffy, but not bulging. Thanks.
Yeah looks like he is booked till August, I’ll look into the Long Island place as well, Any recommendations on the west coast?? Apparently this surgery requires a lot of care and follow ups. I’m looking into Dr. Oró in Colorado, but don’t know any other options. I’ll find out about getting a cervical collar, thanks for the advice.
I was told the exact same crap that it would resolve on it’s own, until my head was bulged out the size of a baseball in back and the bulging was triggering a recurring migraine for 7 days straight. they did the second surgery because the leak was clearly not going to close on its own. it went from a little bulge to a huge bulge in between the time that they just basically told me to not worry about it and that it could take months to close… I was extremely fatigued, dizzy, balance was off, felt weak and could barely hold my head up. it started slow and progressed pretty fast. I was back in for my second surgery about 7 weeks after the first. I still felt like I was leaking after the second and was paranoid so I rented and slept in a hospital bed for literally 3
months after it so I could keep elevated easily while I slept. if you aren’t feeling horrible I’d wait it out cuz apparently many doctors follow the belief that it will close on its own, but if for a second you think something isn’t right I would harass them about it. good luck to you
Thanks, Casey. When I asked my NS what symptoms I should look ou for if it was getting worse, he actually said, "none, because it won’t!!!
wow! I mean I’m not surprised, sounds like a typical response, they think they know everything. my surgeon was so cocky and told me I didn’t have a leak when I did, so I kind of gave him a smug little smile once the leak was confirmed. I think the best thing to do is really just feel the back of your head a lot, especially when laying flat on your back. hope you don’t have to have a revision.
I know, I can't decide if he "really" thinks it won't be a problem, or can't admit something could actually not be perfect with one of his surgeries.
Literally my hand is attached to the back of my head. All I do is feel it because it is scaring the crap out of me. When I lay flat, I can cup the puffiness in my hand, but it is not quite filling it up.
Thanks for your advice. I will keep checking back to see how you are doing.