For the last 9 years my MRI has shown a herniation of 4-5 mm. I recently was referred to a neurosurgeon who did a CINE MRI and this is what it says…
A flow void is visualized through the cerebral aqueduct, along the prepontine cistern, and in the CSF ventral and dorsal to the cervical cord. CSF flow appears to be blunted at the foramen magnum posterior to the cervicomedullary junction but appears intact elsewhere.
I don’t have an appointment with him because he didn’t think the CSF was blocked. Is this saying there is a block? Big enough to call and make another appointment? Any help is appreciated!
I strongly encourage a dialogue with physicians on medical imaging results - be it with your current neurosurgeon or another one. This forum is not a replacement for that.
From what you are saying about your current neurosurgeon, he is not interested in performing surgery with you - that is what surgeons do. They dislike further discussion with clients who are not surgical candidates in their eyes. You can force a meeting with him and ask to discuss your results (talking about the sagittal views and the HORIZONTAL views especially at the level of the foramen magnum - know what these terms are!), review your symptoms, ask what he thinks are Chiari symptoms, ask what he would need to see in order to perform surgery, ask what he might suggest is wrong with you and what other specialists you could see. Of course you can also go see another neurosurgeon if surgery is what you are angling for. Unfortunately, specialists do not tend to hold hands when they do not feel they have anything to offer.
Good luck in your Chiari journey. It can be long and hold a list of physicians who may or may not have the skill set to help you.
Great point about having a dialogue with the physician and thank you for the head’s up on knowing about those terms! I’ll get right on that! Not that I’m expecting someone to read this as my doctor, I just wondered if anyone could help me understand if this is a concern. This is the second neurosurgeon that I’ve seen and they both act as though a 4-5 mm herniation is not enough for surgery although my doctor believes it could be a problem. I’d love to go back knowing a little so I could ask the right questions and know whether or not to be more persistent about surgery. Thank you for your help!
I think the size is not as important as what’s happening to you. Many, many people go their entire lives with a Chiari and are asymptomatic, they never even know they have it and it causes no problems.
I think the real question is how are you being impacted on a daily basis? And, is the impact great enough to consider brain surgery?
To me, the impact is great enough for brain surgery but for the surgeon, he said before the MRI that he didn’t think if there were a block in the CSF, it wasn’t a big enough block for surgery. Since getting the MRI results, it shows there’s a block but I have no idea how big the block is so I don’t know if he’d change his mind regarding the surgery.
If you don’t have the symptoms, of course you wouldn’t want to do brain surgery but he doesn’t understand the struggle in the real world of waking up every day with a migraine and how I barely keep leave at work and I miss out on celebrations because I’m in bed, getting sick, with the worst pain. My ex couldn’t handle it and it caused us to separate and eventually divorce. I am willing to do it because life is already a struggle. It’s hard to convey that to doctors that believe Chiari isn’t a problem until the MRI shows it’s a problem.
It is difficult to do, but finding a primary care doctor (doctor of internal medicine) can give you better care and options. Not all neurosurgeons care to get involved with Chiari Malformation cases; they have become very selective in what they will do surgically.
The flow voids are why I chose to see a surgeon ans the surgeon that happened to be on staff specialized in decompression. Surgery was successful, but he left the hospital and went to teach at Ohio State University. Keep searching. There are surgeons that do not even know that CINE MRIs exist; or they deny that they do. This type of MRI is critical in detecting Chiari issues of flow voids that eventually can cause other health issues.
Thank you!! Because the flow is voided (as it says in the detailed report) or blunted (as it says in the Impression portion of the report), generally speaking, does that mean surgery or do you know of another way to get the CSF to flow properly?
i just got out of the bed for the first time on Wednesday evening from a migraine that started Sunday night. It’s not the first time and I get migraines continuously. I can’t deal with those much longer, that’s why my primary doctor sent me to the neurosurgeon.
Tina, I want to suggest being careful using the term migraine. A Chiari headache and a migraine are two very different things with very different treatments options. Don’t accidentally set a doctor on the path of “migraine” by using that term for a Chiari headache.
Migraines are typically to one side of the head and pounding along with a host of other things like sound and light sensistives. Chiari headaches typically start at the back of the head and wrap around with intense pressure.
Thank you! Yes, I definitely get Chiari headaches and have been diagnosed by a neurologist that this is what is causing problems, including the Chiari headaches, but the neurosurgeon is being cautious, which I do appreciate. I just need relief, like many I’m reading about on here. This site has been such a positive thing for me! Knowing others have the same, or similar, issues and I’m not alone is incredible! I guess I will wait for my next appointment in a month and a half to find out whether or not surgery is the only thing out there for CSF flow that is voided…yet I’m not entirely sure what that means.
I never did present with headaches; I presented with motor function issues. Restoring proper blood flow was the reason the surgery was done, I found out later that it is pertinent in maintaining brain health. The CINE MRI was how I found that out and I insisted on a copy of the written report, which you must read with great care. The reports will not state in simple English what is wrong, instead they will only state flow void seen posterior mixing it in with a lot of other wording.
A doctor that specializes in Chiari will be your best option. Make certain that your health insurance is not holding things back as well. You have a label now of having migraines and that will sideline the doctor’s and insurer’s concerns.
I am still finding the Cymbalta to be wonderful; I can feel my entire body’s periphery and feel like myself again. My Internal Medicine doctor is continuing with a plan to keep the rest of my spine from creating issues. I am also very grateful for 20 years of Chiropractic care; Chiropractors are the unsung heroes of spinal care (look for a good one and remember they should want to listen to you.)
Please know that I only check my emails weekly as a way to watch my budget I use the local library.
I’m now post-surgery! Just for follow-up, in case someone read questions and wonder how it went, I did have a CSF block, decided to do the posterior fossal decompression surgery and I’ve been Chiari-headache, migraine-free, since! Directly after surgery, it was painful and I was out of work for one month but completely worth it! I have my life back again!
I went to a physical therapy lady and she did craniosacral message. When I get a headache or neck ache I can do it myself now so that I get the relief that I need to relieve the discomfort. If you can find a person that does the craniosacral message it might very well help you. It helps to restore circulation to the scalp and such. My herniation was 8 mm and I had the large craniectomy. I have had many things that are presenting problems from the large decompression that I had done 20 yrs ago. It relieved some problems but now from the instability that it has caused for me with no skull in the back of your head below the occipital bone I had to have C3-T1 fused in my neck. Also, my spine became compromised in many areas. I developed scoliosis, compression fractures, facet issues, nerve compression in the lumbar spine which eventually led to having my back fused from the sacrum bolted to my pelvic bones and all the way up to T9. So, sometimes it might not be the best thing to have surgery. Have you looked at some other ways to deal with the migraines? Trust me I know the frustration that you are feeling. I have an 18 page typed account of what I have been through in the past 20 + years. So many surgeries and I still now have more to go from things that all started with the Chiari. I did not have Chiari until I was a Volunteer EMT riding on a call to a possible stroke patient and the driver of the ambulance was not paying attention to his driving. I saw the train light were flashing and screamed that they were flashing. The driver could not stop and the 46,000 ton train hit right beside where I was sitting. From this accident I ended up with a 8 mm herniation. One thing that did make my symptoms worse after the accident was a physical therapist did mechanical traction twice and that made my symptoms much, much worse. So avoid that most definitely. I hope that I have helped you in some way. If there is anything else that i can help you with please write and let me know.
