I'm a recently diagnosed Chiarian with a recent cervical MRI revealed a tonsillar herniation of 4mm, along with a loss of cervical lordosis and the early stages of degenerative disc disease. I was diagnosed with childhood migraines at age 4, but only became symptomatic following a surfing accident that left me with a concussion. I’ve been symptomatic for 12 years now, with symptoms growingly increasingly worse over time. I’ve seen lots of specialists and received many diagnoses that have all eventually been disproven. After reading the results of this most recent MRI, I began researching Chiari and it's THE most perfect fit of all the diagnoses that I've had over the years! This MRI and learning of Chiari gave me great hope…until I began to read about the controversy surrounding cases of minimal tonsillar herniation. It seems that one school of thought says that tonsillar herniation isn’t considered Chiari unless it’s larger than 5mm while another argues that 3-5mm herniation can be significant if accompanied by severe symptoms. From what I’ve read, my symptoms would be considered severe given the extensive neurologic involvement.
I’m looking for recommendations of neurosurgeons that "believe in” borderline / Type 0 Chiari cases like mine with a <5mm herniation, but do NOT want an NS that operates simply for the sake of operating. Would anyone with similar experiences or knowledge about a specific surgeon's practices PLEASE post or message me with suggestions? Ideally, I'd like to find someone in the northeast (MA, NY, PA, NJ, DE, MD, DC, VA with Boston/NYC/Baltimore being most preferable) but I’d even consider Chicago. I’m willing to travel to find the right doctor, though!
Would also be very appreciative for neurosurgeons NOT to see as they won’t even consider minimal herniations. If you have any NEGATIVE comments, please PRIVATE MESSAGE me!
Right now, I’m considering:
Boston: Dr. William Curry - Mass Gen Spine Dr. William Butler - Mass Gen Dr. Jean Coumans - Mass Gen Dr. Lawrence Frances Bourges - Mass Gen Dr. Carl Heilman - Tufts Dr. Steven Hwang - Tufts
NYC Dr. Jeffrey Greenfield - NYP/Weill-Cornell Dr. Neil Feldstein - Columbia Dr. Richard Anderson - Columbia
DC/Maryland: Dr. Jon Weingart - Hopkins Dr. George Jallo - Hopkins Dr. Fraser C. Henderson - Hopkins
Hi Kris278, I’m Kelly welcome to the chiari support group. I’m not able to suggest any NS, however there is a doctors list under chiari info for members. My understanding is that each of these doctors specializes in chiari, and was recommended by members. Now don’t quote me on that because I could be wrong. I really hope you are able to find one that can help you.
I can understand not wanting to get the run around all over again. It took me years to get a diagnosis. I had decompression surgery in July 2011. My symptoms did improve much after the surgery and the one’s that did have come back. I was told since the surgery didn’t work chiari wasn’t causing my symptoms. I was sent from specialist to specialist and had test after test. They never find anything.
After joining the support group I found that I am not the only one with this outcome. I’ve learned that decompression surgery is not a cure. There are members that have successfully surgery only to have their symptoms return years later.
I pray that you can find a really good NS that can help you, and you will have successful treatment that gives you your life back. I’m very sorry that you have to go through this.
Thanks so much for your message. While I would wish this life upon no one, it is comforting to know that there are other people out there with similar situations. It's just so frustrating and heartbreaking. There have been so many medical advances yet so many things that remain unanswered. I have a neurologist right now that oversees my care and management of my symptoms. He's an MS specialist and sees various people with MS-like symptoms that don't actually have MS. Sometimes, he's able to piece together bits of information and make a diagnosis. Other times, like with me, he can't. He doesn't give up, though, and I think that's what's so important. He recognizes that SOMETHING is clearly wrong and is adamant that there's a definite gap in the medical community for undiagnosed and rare diseases that needs additional research/funding/etc.
I looked back through your postings and see that you, too, became symptomatic in your early 20s. I'm so sorry to hear that your decompression wasn't the cure. I can only imagine how frustrating it would be to think that everything will get better and then to find out that it doesn't. You mentioned that you'd seen all kinds of specialists and had various tests that haven't revealed anything. So, may I ask...does that mean you don't have any other accompanying diagnoses that would affect your Chiari (like EDS, cervical instability, etc.)? I'm also curious. How large was your herniation before surgery? Do you have any herniation today? Are you more symptomatic than you were before the decompression?
Thanks again for reaching out to me. Your prayers and kindness are much appreciated and reciprocated.
Hi Kris278, sorry I didn’t get back to you sooner. My herniation was 7mm, at the time of my decompression surgery. I did have MRI’S done after the surgery, and I think I remember one saying I had a 5mm herniation with a tight fausa. Sorry for my spelling. After my surgery I quit having episodes of feeling like I was going to black out, and also after several years I don’t have as much constant pressure in my ears. Those are the two things it did help. I still have extreme fatigue, head, neck, spine pain, tingling in my arms and legs, numbness in my hands and feet, sensitivity to hot and cold, ringing in my ears, migraines only on the right side of my head, intermittent balance issues. The list goes on and changes from day to day. One thing that has gotten worse is that my arms and legs would tingling all the time, but now I have really bad nerve pain especially in my legs and feet. I didn’t have that before, and my blood sugar is fine no sign of diabetes. As for the test I’ve had, I have nothing obvious, like heart, lungs, organs, cancer, autoimmune all of that is fine. I’m not sure about the chiari related stuff. I didn’t go to a neurosurgeon that specializes in chiari, so I wasn’t told anything about chiari related conditions. I had only learn about them when I joined the support group. I don’t have the money to get tested for any of them, so I will just have to live with it.
You mention nerve pain among a host of other symptoms. CHairi does a wonderful job of messing up how the brain perceives and processes external stimuli. I have found that guided motor imagery from the neuro-orthopedic institute is wonderful at reorganizing my wonky brain so that strange pains and sensitivities are explained and exercises available to settle the craziness down. They have good literature and are backed by research - a new wave of knowledge to explain pain and to figure out what to do with it. Our world seems to give equal weight to every "alternative" treatment when that is not appropriate. Of course, NOI treatments take time and effort. Unfortunately, surgery does not reorganize brain pathways - sigh!
PS the exercises I have described in "Chiari info for members" is highly effective for Chiari related dizziness. I just crossed a log over a creek last week.
I never fully appreciated how entirely crazy the brain could be until all of this began evolving. I'll definitely look into this. Thanks!
gabby jazzypants said:
You mention nerve pain among a host of other symptoms. CHairi does a wonderful job of messing up how the brain perceives and processes external stimuli. I have found that guided motor imagery from the neuro-orthopedic institute is wonderful at reorganizing my wonky brain so that strange pains and sensitivities are explained and exercises available to settle the craziness down. They have good literature and are backed by research - a new wave of knowledge to explain pain and to figure out what to do with it. Our world seems to give equal weight to every "alternative" treatment when that is not appropriate. Of course, NOI treatments take time and effort. Unfortunately, surgery does not reorganize brain pathways - sigh!
PS the exercises I have described in "Chiari info for members" is highly effective for Chiari related dizziness. I just crossed a log over a creek last week.
