hi Everyone! This is my first post. I was wondering if anyone else has Basilar Invagination with or without Chiari Malformation?
Rindy, we are glad you are here! I don’t have a basilar invag, so I can’t specifically have an opinion on it. But… There are others here that do have it so I’m hoping they catch your post and respond. There is some great info about the diagnosis and treatment on cfsinfo.org, go to videos, metropolitan area, then look for cranial cervical instability videos, some of the EDS videos bring it up as well. Dr Henderson is not the only NS who treats these, but he has a wonderful reputation and helped a lot of Chiarians and CCIs! Do you mind if I asked who diagnosed you? Radiologist? NS? I’m just plain curious.
Jenn
Hi Jenn! Sorry I didn't see your post sooner. Not sure how I missed it. I will check out the info you gave. Thanks!
I was diagnosed with BI by NS Dr. Gower in Atlanta. I had 4 MRIs and 2 CTs and the radiologists missed it every time. One report actually said, "brainstem is unremarkable"! They just didn't know about BI, but "unremarkable"!?! My Neurologist used my films to teach the other doctors about BI so that was good. Hopefully, the radiologists got the memo too! I had my films reviewed by UPMC and I have seen a doctor at Emory. I'm not under a doctor"s care right now as my husband lost his job last December and is still unemployed so we have no insurance. I don't know of any doctors in Atlanta that know much about BI. I do know that should the time come that I might need surgery, there is no one in Atlanta who can do it. I would love to meet someone else who has BI. Can't seem to find anyone.
I have not officially been diagnosed with Chiari because the insurance company we had says there has to be an 8mm herniation for a diagnosis. I measured 7mm myself on my MRIs. I know that it gets worse when I sit. I found a study that showed an MRI of someone with BI lying down and there was no Chiari. Then an MRI with that person sitting and Chiari was shown. I would love to have a sitting MRI when we get insurance again. I also would love to go to the Chiari Institute for evaluation. My symptoms are manageable right now. I did struggle for almost a year after having an LP.
I have a brother with Transverse Myelitis and a sister with RSD/CRPS and I am curious if there is any connection. My sister has many Chiari/BI symptoms. She hopefully will have an MRI soon and we can find out if she has Chiari or BI.
Thanks for your reply!
jcdemar said:
Rindy, we are glad you are here! I don't have a basilar invag, so I can't specifically have an opinion on it. But.... There are others here that do have it so I'm hoping they catch your post and respond. There is some great info about the diagnosis and treatment on cfsinfo.org, go to videos, metropolitan area, then look for cranial cervical instability videos, some of the EDS videos bring it up as well. Dr Henderson is not the only NS who treats these, but he has a wonderful reputation and helped a lot of Chiarians and CCIs! Do you mind if I asked who diagnosed you? Radiologist? NS? I'm just plain curious.
Jenn
Hi Mase! You are the first person I have "met" with BI. I have Basilar Invagination which is similar. I have not been diagnosed with cranial instability, but at least 3 times now my neuro symptoms have improved after my neck has popped. My films were evaluated by a doc at UPMC and he said he didn't think my symptoms were coming from BI, but rather from my neck. That was all the info I got from him. The NS (2 different ones) I have seen here in Atlanta don't see anything involving my neck. I also don't have an official CM diagnosis because our insurance company says there has to be an 8mm herniation for a CM diagnosis. I measure 7mm on my MRI. I do not currently have a doctor because my husband lost his job 11 months ago and our coverage ended last Spring.
What kind of symptoms do you have? My symptoms are: Pressure in forehead, numbness on side of face and sometimes behind my nose, one eye dilates, vertigo, especially when I turn my head left, right, up or down and hold it there, a weird feeling in my head that something is just not right, ringing and pulsatile tinnitus, numbness/choky feeling in throat/neck, apnea?, gravelly/clicking/cracking sounds at skull base, slight twitch of head, hoarseness, sometimes arms and/or legs feel heavy and weak, some fine motor difficulty in 4th and 5th fingers on one hand and a feeling of cold in the tip of my little finger on the other hand, drop attack, fatigue, and strangest of all, one time I was walking across the street to my neighbors house and my body suddenly did a 180 and I took a few steps in the opposite direction from where I wanted to go (absolutely freaky!). My symptoms are almost always better in the morning and worse as the day goes on and worse if I sit too long. Most of my symptoms come in cycles and some are always present to some degree. Also, as the result of a lumbar puncture, I had a CSF leak, followed by low-frequency hearing loss, severe pressure in ears, tinnitus and hyperacusis. I had to convince doctors that I still had a CSF leak even after the headache went away. I finally had a blood patch 6 weeks later which immediately cured the hearing loss and severe pressure in my ears. The tinnitus has greatly improved and, thank God, the hyperacusis went away after 10 months.
I guess that is my story in a nutshell! Sorry for such a long post, but I am so glad to finally meet someone else with BI. It was 19 months ago that I was diagnosed.
I'm so glad you are seeing someone at the Chiari Institute. I would love to go there. I am actually trying to find out if my siblings have Chiari because all 3 of us have rare brain/spinal cord disorders. I am trying to find a connection between us and I'm wondering if Chiari is it.
I am curious what the severity of your symptoms is to warrant surgery. I was told that my symptoms are not severe enough to risk surgery.
Praying for you!
Rindy
Hi Rindy,
My MRI (only after surgery) states I have mild basilar invagination. I had decompression duraplasty six years ago. Although I no longer get the occipital headaches my symptoms are weakness, tinnitus, arythmias, face/feet tingling, neck cracking, twitching, swallowing issues, occasional sharp shooting pain through neck and dizziness, ear pressure/pain, tmj like issues, brain fog, word finding issues, anxiety, no balance, history of seizures, fatigue. These are a lot but are mild and intermittent so I feel like I can live with them for now and hope they don’t worsen or get new ones. A dr has yet to really take these issues seriously or the BI according to the MRI. So I kinda go day to day and am grateful for the pain free days I have.
Sarah
Yes…my daughter who is 17 years old has Basilar Invagination…I would appreciate it if you could share how this effects your health…please do reply…Regards,
Ambareen
My son was just diagnosed with BI after he had his Chiari surgery, since his surgery his symptoms have worsened especially his swallowing, speech, dizziness and sleep apnea. The doctor is wanting to do a fusion on him where they would fuse with rods and screws from his skull to his C5, we also learned after his Chiari surgery that his C1 &C3 were never fully formed so when they did the decompression surgery it has now caused more instability in the spine. Has anyone else experienced anything like this? We are really struggling with the next step he is only 16 and hard to believe he will have to have this spinal fusion done.