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**Need East Coast Neurosurgeon: Borderline / Type 0 (4mm herniation)**
Hi all, this is my first posting here!
A recent cervical MRI revealed a tonsillar herniation of 4mm and a possible Chiari malformation, along with a loss of cervical lordosis and the early stages of degenerative disc disease. 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 (detailed in the longer posting below). And no, in case some of you are wondering, I haven't yet had an upright MRI, CINE MRI, full spine MRI to look for syrinx...this is all very new and I was hoping to have a Chiari NS set the direction for the next set of imaging.
I’m looking for recommendations of neurosurgeons that "believe in” borderline / Type 0 Chiari cases like mine with a 3-5mm herniation. Would anyone with similar experiences or knowledge about a specific surgeon's practice ]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 -- even NC would be okay), but I’d even consider Chicago. Would also be very appreciative for neurosurgeons NOT to see as they won’t even consider minimal herniations.
Thank you all so much :)
—
And here's the longer version if you're looking for some more details...
It all started 12 years ago following a surfing accident that left me with a mild concussion. I’d always had headaches, but the pain was no longer dull, aching, and annoying; it was pounding, excruciating, and utterly debilitating. Getting smashed over the head with a surfboard in hurricane-force waves makes for one good wallop, so I didn’t think too much of the headaches and assumed they’d get better with time. Instead of getting better, though, things seemed to get worse. Some days I was barely able to turn my head at all as the pain originating at the base of my skull and running down into my neck and shoulders was so horrific. I returned to college that fall, but missed more lectures and seminars than I can count. Unbeknownst to me, I was undoubtedly exacerbating the pain by doing/wearing so many of the things that come hand-in-hand with college life: riding in cars with manual transmission, parties with strobe lights, halter tops, racerback sports bras, trips to the hair salon. I eventually connected my head/neck/shoulder pain with things that tied around my neck and rid my closet of all those items. For the other things (bright lights, jostling), though, I told myself that my brain CT had come back normal so obviously nothing was wrong. I began to have trouble driving at night, but told myself to just suck it up and that’s basically what I did.
Eventually, though, it wasn’t just the head/neck/shoulder pain and sensitivity to light. Symptoms began emerging and to this day, each year seems to bring with it a handful of new symptoms: muscle pain, joint pain, fatigue, brain fog, leg weakness, cognitive deficits, sleep problems, trouble finding words, trouble with speech, impairment of fine motor skills, raynaud’s, livedo reticularis (mottled skin), balance problems, sensitivity to light, sensitivity to sound, ataxia, polymorphic light eruption, food allergies, gluten intolerance, vasovagal syncope, lightheadedness, intermittent hearing loss, hand/feet neuropathies, heat intolerance, cold intolerance, inability to regulate body temperature, high AND low blood pressure. Most days, I feel like my body has been run over (and over and over and over again) and that my head is going to simply explode from the intense pressure and the pain at the back of my skull. Some days, the pain is no intense that it’s vomit-inducing.
Over the last 12 years, there’s been one diagnosis after another: fibromyalgia, neurological lyme disease, lupus, multiple sclerosis, sjogren syndrome, marfan syndrome, hemochromatosis, epilepsy, gillian-barre, connective tissue disorder. My proximity to New York City has enabled me to see some of the best specialists, yet not a single one of them has been able to discern exactly what might be causing all my symptoms. The entire diagnostic situation was probably further complicated when I slipped on fell on an icy street in 2010 and caught myself entirely on my outstretched right arm. The head/neck/shoulder pain spread further and now also encompasses my right shoulder blade, right elbow, and right forearm — essentially making my dominant right side a pain incubator with any movement. I’ve had 5 elbow and shoulder surgeries, but none has been overly successful in reducing the pain which has baffled my orthopedic surgeons. Other non-othopedic specialists that have only seen for me the first time after the slip and fall on the ice assume that my symptoms must be attributed to the fall entirely. No, I want to scream, they are just that much worse! At this point, I'm just left with a host of debilitating symptoms that can't be explained. The specialists that I continue to see regularly are in agreement that there's definitely something wrong that is responsible for all of my neurological symptoms, but they just haven't been able to pinpoint what.
A recent cervical MRI revealed a tonsillar herniation of 4mm and a possible Chiari malformation, along with a loss of cervical lordosis and the early stages of degenerative disc disease. I began researching Chiari and it's THE most perfect fit of all the diagnoses that I've had over the years! In retrospect, it makes a lot of sense. I can't remember a day that I haven't woken up without a headache...and I'm in my early 30’s, so that’s a lot of days. My mom — who amazingly still has the notes she took at my pediatrician visits in the 1980s! — sees that I was first diagnosed with migraines at age 4. These childhood headaches were simply a part of my daily life and I learned how to cope at a young age — cold compresses nearly every night at bed time and ibuprofen multiple times a day. Aside from the headaches (and a diagnosis of Raynaud’s in high school), I was a very healthy child. I met all my developmental milestones, excelled at school, and became very involved with sports (I even had a short period of being an Olympic hopeful in my 20’s before I realized that it was just too unrealistic with my health). In short, life was pretty good and I had a really promising future. Over the last 12 years, symptoms have increasingly interfered with my life to the point that I've had to go on medical leave every other semester. I couldn’t hold a full-time job right now. I just completed by 6th year of what was supposed to have been a 3 year graduate program. Life is NOT how I'd ever imagined it would be.
This recent 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.
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 -- even NC would be okay), but I’d even consider Chicago. Would also be very appreciative for neurosurgeons NOT to see if they won’t even consider minimal herniations.
Thank you all in advance :)
A recent cervical MRI revealed a tonsillar herniation of 4mm and a possible Chiari malformation, along with a loss of cervical lordosis and the early stages of degenerative disc disease. 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 (detailed in the longer posting below). And no, in case some of you are wondering, I haven't yet had an upright MRI, CINE MRI, full spine MRI to look for syrinx...this is all very new and I was hoping to have a Chiari NS set the direction for the next set of imaging.
I’m looking for recommendations of neurosurgeons that "believe in” borderline / Type 0 Chiari cases like mine with a 3-5mm herniation. Would anyone with similar experiences or knowledge about a specific surgeon's practice ]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 -- even NC would be okay), but I’d even consider Chicago. Would also be very appreciative for neurosurgeons NOT to see as they won’t even consider minimal herniations.
Thank you all so much :)
—
And here's the longer version if you're looking for some more details...
It all started 12 years ago following a surfing accident that left me with a mild concussion. I’d always had headaches, but the pain was no longer dull, aching, and annoying; it was pounding, excruciating, and utterly debilitating. Getting smashed over the head with a surfboard in hurricane-force waves makes for one good wallop, so I didn’t think too much of the headaches and assumed they’d get better with time. Instead of getting better, though, things seemed to get worse. Some days I was barely able to turn my head at all as the pain originating at the base of my skull and running down into my neck and shoulders was so horrific. I returned to college that fall, but missed more lectures and seminars than I can count. Unbeknownst to me, I was undoubtedly exacerbating the pain by doing/wearing so many of the things that come hand-in-hand with college life: riding in cars with manual transmission, parties with strobe lights, halter tops, racerback sports bras, trips to the hair salon. I eventually connected my head/neck/shoulder pain with things that tied around my neck and rid my closet of all those items. For the other things (bright lights, jostling), though, I told myself that my brain CT had come back normal so obviously nothing was wrong. I began to have trouble driving at night, but told myself to just suck it up and that’s basically what I did.
Eventually, though, it wasn’t just the head/neck/shoulder pain and sensitivity to light. Symptoms began emerging and to this day, each year seems to bring with it a handful of new symptoms: muscle pain, joint pain, fatigue, brain fog, leg weakness, cognitive deficits, sleep problems, trouble finding words, trouble with speech, impairment of fine motor skills, raynaud’s, livedo reticularis (mottled skin), balance problems, sensitivity to light, sensitivity to sound, ataxia, polymorphic light eruption, food allergies, gluten intolerance, vasovagal syncope, lightheadedness, intermittent hearing loss, hand/feet neuropathies, heat intolerance, cold intolerance, inability to regulate body temperature, high AND low blood pressure. Most days, I feel like my body has been run over (and over and over and over again) and that my head is going to simply explode from the intense pressure and the pain at the back of my skull. Some days, the pain is no intense that it’s vomit-inducing.
Over the last 12 years, there’s been one diagnosis after another: fibromyalgia, neurological lyme disease, lupus, multiple sclerosis, sjogren syndrome, marfan syndrome, hemochromatosis, epilepsy, gillian-barre, connective tissue disorder. My proximity to New York City has enabled me to see some of the best specialists, yet not a single one of them has been able to discern exactly what might be causing all my symptoms. The entire diagnostic situation was probably further complicated when I slipped on fell on an icy street in 2010 and caught myself entirely on my outstretched right arm. The head/neck/shoulder pain spread further and now also encompasses my right shoulder blade, right elbow, and right forearm — essentially making my dominant right side a pain incubator with any movement. I’ve had 5 elbow and shoulder surgeries, but none has been overly successful in reducing the pain which has baffled my orthopedic surgeons. Other non-othopedic specialists that have only seen for me the first time after the slip and fall on the ice assume that my symptoms must be attributed to the fall entirely. No, I want to scream, they are just that much worse! At this point, I'm just left with a host of debilitating symptoms that can't be explained. The specialists that I continue to see regularly are in agreement that there's definitely something wrong that is responsible for all of my neurological symptoms, but they just haven't been able to pinpoint what.
A recent cervical MRI revealed a tonsillar herniation of 4mm and a possible Chiari malformation, along with a loss of cervical lordosis and the early stages of degenerative disc disease. I began researching Chiari and it's THE most perfect fit of all the diagnoses that I've had over the years! In retrospect, it makes a lot of sense. I can't remember a day that I haven't woken up without a headache...and I'm in my early 30’s, so that’s a lot of days. My mom — who amazingly still has the notes she took at my pediatrician visits in the 1980s! — sees that I was first diagnosed with migraines at age 4. These childhood headaches were simply a part of my daily life and I learned how to cope at a young age — cold compresses nearly every night at bed time and ibuprofen multiple times a day. Aside from the headaches (and a diagnosis of Raynaud’s in high school), I was a very healthy child. I met all my developmental milestones, excelled at school, and became very involved with sports (I even had a short period of being an Olympic hopeful in my 20’s before I realized that it was just too unrealistic with my health). In short, life was pretty good and I had a really promising future. Over the last 12 years, symptoms have increasingly interfered with my life to the point that I've had to go on medical leave every other semester. I couldn’t hold a full-time job right now. I just completed by 6th year of what was supposed to have been a 3 year graduate program. Life is NOT how I'd ever imagined it would be.
This recent 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.
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 -- even NC would be okay), but I’d even consider Chicago. Would also be very appreciative for neurosurgeons NOT to see if they won’t even consider minimal herniations.
Thank you all in advance :)
COMMUNITY LEADER
I am glad it is helpful to you and it is best to keep cautiously optimistic ....we all need to be positive and take our time to educate ourselves and research Drs to make sure we are making the right decision for us.
Thanks for the insight on the other conditions and the doctors. I'm so glad to hear that you're doing better after surgery...that makes me cautiously optimistic :)
Thanks so much...I definitely need to check out some of those names! Did you ever need surgery, and if so, did you have a NS that you'd recommend?
COMMUNITY LEADER
Hi kris and welcome to the Chiari forum.
There are more related conditions to rule out as well as having the CINE MRI and other testing you posted about above.....Ehlers-Danlos, sleep apnea, retroflexed odontoid,baslar invagnation,.......my herniation was 4mm and 6 mm....many Drs would not consider that to be Chiari either,,,,but I was having drop attacks and my NS at TCI did more testing and found that I did indeed need surgery which I had in "09 and am doing so much better....finding the right Dr is key.
.
NY has The Chiari Institute and The Chiari Neurosurgical Center@ NSPC.
Chiari Institute
Great Neck, New York
(516) 570-4400
(516) 394-8350
· Dr. Harold Rekate
· Dr. Salvitore Insinga
· Dr. Rohit Verma
· Dr. Misao Nishikawa
· Dr. Sol Mora
· Dr. Amit Shelat
· Dr. L. Thierry Remy
The Chiari Neurosurgical Center@ NSPC
Dr. Paolo Bolognese MD
Suite 108
1991 Marcus Ave
Lake Success, NY 11042
Winthrop University Hospital
259 First Street
Mineola,NY 11501
www.chiarinsc.com
Hey, sorry for all the troubles you have been going through. I do not have Chiary but I have a small syrinx in cervical area so I have done bunch of research for specialists. There are few names that I came across that have helped people with Chiary 0. Dr. heiss at NIH, Dr. dr. bolognese, Criag hospital in Colorada, Dr. Ore.
You may have to look harder for someone who takes Chiary 0 legitimately.
You can also try John Hopkins, and Duke University, I have heard there are some good doctors there as well. All the best and don't lose hope. There are some good recovery stories out there.
You may have to look harder for someone who takes Chiary 0 legitimately.
You can also try John Hopkins, and Duke University, I have heard there are some good doctors there as well. All the best and don't lose hope. There are some good recovery stories out there.
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