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Chiari Malformation and Syringomyelia

It has been brought to the MODS\ADMINS attention that we needed a forum to discuss conditions not previously covered by our other forums. I have been in contact with members that were looking for a place to discuss Chiari Malformation , Syringomyelia , etc...so this is the place for that. If you are diagnosed with these things then let's get to talking about it , post questions , offer support and help to each other. If there is anything that I can help you with then please feel free to PM me and I will be more than happy to do whatever I can for you. Take care....Miki


  • Have anyone have had surgery for the chiari that can give me some insight about it? I'm going for another 2 mri's one for the brain and one for the cervical to check on the chiari and the syrinx, the syrinx was from c-5 to t-6 last time it was checked. Surgery would be my next step. But I would like to hear from someone who's gone through it. Thanks.
  • I haven't had the surgery. I'm actually trying to keep my symptoms at a manageable level. I have a 7mm herniation. CM but no SM that I know of. I do know that there is a member or two who have had surgery and will chime in. But I have a question for you. What was the deciding factor for you and your doctor that surgery was necessary? Is it your symptoms or the size of the syrinx?
  • haven't had surgery either but I do want to wish you both the very best and I truly hope that you can find the answers that you are looking for. If you know of other members on the forum that suffer from these things then let's get the word out so that everyone knows that they have a forum to come to now to discuss it. Once again , I wish you the very best and if I can ever help with anything then please let me know.....take care....Miki
    edited 06/17/2016 - 2:10 PM
    Stephanie , the Co-Founder and President of Spine Health is putting it on the docket to have some articles written on Chiari\Syringomyelia but until those are posted I thought that I might provide the links to two articles that I came across. I hope this helps....

    Below is a post that was previously posted by Dilauro (Ron) in Alternative Treatments , it talks about what type of doctor treats Chiari\Syringomyelia (at the bottom of the page).....

    Some common set of professions and questions that have been asked on Spine-Health

    The following are snipets taken from various web sources including

    Chiropractors, also known as doctors of chiropractic or chiropractic physicians, diagnose and treat patients with health problems of the musculoskeletal system and treat the effects of those problems on the nervous system and on general health. Some chiropractors use other alternative medicines in their practices, including therapies using water, light, massage, ultrasound, electric, acupuncture, and heat. They also may apply supports such as straps, tapes, and braces to manually adjust the spine. Chiropractors counsel patients about health concepts such as nutrition, exercise, changes in lifestyle, and stress management, but chiropractors do not prescribe drugs or perform surgery. Chiropractic programs require a minimum of 4,200 hours of combined classroom, laboratory, and clinical experience. All States and the District of Columbia regulate the practice of chiropractic and grant licenses to chiropractors who meet the educational and examination requirements established by the State. Chiropractors can practice only in States where they are licensed.

    Orthopedic Surgeon
    An orthopedic surgeon uses surgical, medical or physical means to investigate, preserve and restore functions to a patient's extremities or spine. An orthopedic surgeon restores functions through surgery, due to disease and injury, to the ligaments, tendons, joints, bones, nerves and muscles but also use physical, medical and rehabilitative methods when necessary.
    All orthopedic surgeons are exposed to spine surgery during their four or five year training program. Some orthopedic residencies are at institutions where there are one or more orthopedic surgeons who specialize in spine surgery.

    Neurologist vs Neurosurgeon

    Both neurologists and neurosurgeons are physicians. A neurologist is more like an internist specializing in the nervous system in that he/she doesn't operate. A neurosurgeon operates.
    Neurologists deal with problems like seizures, Parkinson's disease, headaches, tremor, and peripheral nerve problems like numbness and burning.
    Neurosurgeons deals with problems requiring surgery, like brain tumors and pinched nerves in the spine.

    Spinal Surgery - Orthopedic vs Neurosurgeon
    If I need to be evaluated for a spinal problem, or, if I need spinal surgery, should I see a neurosurgeon or an orthopedic surgeon?
    Though things were different many years ago, today there are a large number of both orthopedic surgeons and neurosurgeons who specialize in spine surgery. More and more, we are referring to each other as "spine surgeons" as the distinction between us is becoming nonexistent. Both neurosurgeons and orthopedic surgeons specializing in spine surgery are skilled in taking care of disc herniations, disc degenerations, spinal stenosis, fractures of the spine, slippage of the spine (spondylolisthesis), scoliosis, bone tumors of the spine, etc
    There are a few areas where there still is a difference. Only neurosurgeons are trained during their six or seven year residency to perform procedures inside the lining of the spinal canal called the dura. Thus, spinal cord tumors, arachnoid cysts, syringomyelia, Chiari malformation, spinal cord arteriovenous malformation, diplomyelia or diastematomyelia, tethered spinal cord, spina bifida or myelomeningocele, lipomyelomeningocele, tumors at the junction of the base of the skull and upper cervical spine, nerve root tumors, and a few other diagnoses still fall under the domain of the neurosurgeon. Similarly, both pediatric and adult scoliosis and other spinal deformities are still primarily treated surgically by orthopedic spine specialists.

    Once again , if there is anything that I can ever do for any of you then please do not hesitate to let me know....Miki
  • I appreciate all of the hard work that you guys do here at Spine Health and helping to get the word out about Chiari. There is so little help out there for patients like me that we are often left with more questions than answers. Most doctors do not even consider this to be an issue but more of an incidental finding on an MRI and treat patients as such. However, many of us suffer from symptoms that are not explained by any other condition. Such as my lower back pain cannot be explained by my ACDF surgery or symptoms that lead to it but makes perfect sense when mentioned to a Doctor who is familiar with Syringomyelia or Chiari. I had an unexplained headache immediately after my accident which did not fit with my cervical issues. But after seeing the MRI and putting it together with the headache it became clear to a Neurologist who treats many Chiari cases in my hometown. Which leads me back to my incidental findings issue with doctors. There are only 2 Neurologists in my City (and I live in a major metropolitan area) that actually treat Chiari or Syringomyelia as if it were the primary disorder with a patient. Only two. I was blown away when I found that out. I wish there was more time dedicated to this condition in medical schools so that patients such as myself had more options. I am however, grateful to be receiving quality care from 1 of the 2 doctors. This condition will not ever resolve on it's own but with his help we are hoping that I do not ever have to visit with the Neuro Surgeon upstairs.
  • I will add some comments later today , but tonya to let you know I am in. Razzle :H
  • We are looking forward to your insight. :H
  • You are most welcome my friend!!!!!

    Glad to see that Roz finally made it back on too!!!!

    Good luck to you all in finding answers to your questions , you will all be in my thoughts and prayers....take care....Miki
  • Hi Tonya,
    Sorry to answer you so late, I haven't been feeling good and haven't been in the computer for a few days. The symptoms are the main reason for the surgery, the pressure in the back of the head it's just too much. The headaches feel like my head is going to blow up. The numbness of the arms, pain in the neck and shoulders. And I could go on. The syrinx was from c-5 to t-3 when I was first diagnosed with it, and the last MRI shows that it has grown to t-6. This Friday I go for both MRI's, one for the brain/neck and one cervical. My cousin had the chiari but no syrinx, I've pretty much interviewed her and asked her questions about post surgery. She is doing much better, her surgery was in November 07 and she is living her life as normal as she can. She said that now when she gets a headache she can just take 2 tylenols and it'll be gone. I can't wait for that to happen. I take medications and feel the same.
    I don't want to be medicated for the rest of my life. I'm 41 yrs old right now and I think that to have surgery 5 years from now it would be much more difficult to deal with than now. I saw the doctor in September last year, and he told me that he would let me decide to have surgery or not, but at the time my father was going through surgery so I prefered to hold back for another 6 months. I'm just tired of this pain. Thanks for answering back.
  • Thanks Mikki,
    Like I was telling Tonya, I haven't been feeling well these past couple of days, so I haven't been in the computer to check any responses. I appreciate your help and information. I'm at work now, but when I get home I'll open the links and check it out.
  • Hi Miki,
    I am sorry for mispelling your name. I was diagnosed back in 2004. My neurologist found the Syrinx from c-5 to t-3, so he sent me to the neurosurgeons for a consultation. There they did more tests and discovered the chiari.
    Chiari is hard to diagnosed without and MRI, because doctors think you are having migrane headaches. And when you tell them about the back pain, and they don't find anything they think you are crazy. In my case, because of having herniated and bulging discs, they would've never had found the chiari. If it wasn't for the grace of God, I don't think I could do all the things I do.
    I'm glad I found this site though. Keep the good work.

    Here is what my diagnosis is:
    Arnold Chiari Malformation I.
    Syrinx extends from C5 to T6 w/o abnormal enhancement or changes within the cervical or thoracic spinal cord.
    Right paracentral disc herniation, C3-C4 partially effacing ventral CSF space.
    Disc bulge, C4-C5 replacing the previously described dic herniation.
    Disc herniation, C5-C6 more brad-based a this time indenting the thecal sac.
    Disc protrusion, C6-C7 partially effacing the ventral CSF space, an interval finding.
    T2/FLAIR hyperintense signal pons righ paramedially, nonspecific. The differential diagnosis includes ischemic microvascular change, demyelination and vasculitis.
    Ventral disc bulging at T9-T10 and T10-T11.
    Ventral disc bulging at T11-T12.
    Minimal noncompressive disc bulges, L3-L4 and L4-L5.
  • It's very long if they are going to do a flow study. Since I have had ACDF surgery at C5/C6 is was incredibly hard on my body because of the long time on the table. You might consider asking for some sort of sedative for the procedure and talk to your doctor about it. I had my own valium which they advised me to take when I got there but even with that I came out with incredible pain. Mine took 3 hours and laying there for that length of time was almost impossible. I like to hear positive stories about the surgery so should I have to face this I can have the knowledge that it does help. I'm just stuck in the place between it's not that bad and maybe I can hang in there and then the next day something horrible happens and I am right back to wondering if surgery might not fix this once and for all. I don't know I guess I've just heard too many horror stories about symptoms getting no better or even worse after surgery. My Neurologist thinks this is not a decision that I have to make right now but it it can be fixed. In my time and his I suppose.
  • Hi Tonya,
    Yes I know about that pain. Imagine I have a collection of films that if someday someone would buy, I would make good money out of them :)
    The last MRIs I had done, I could barely get up from the table, I had to take my time.
    Well, let me tell you that I went to the behavioral neurologist Dr. Marks yesterday (because of the memory loss) as a follow up, upon checking me out she sent me to my eye doctor specialist Dr. Sorkin because she said she couldn't see a disk in the right eye, to ask the specialist to check it out and call her back with his finding. So I did. The specialist says that the blood vessels coming out of the optical nerve are abnormal! that he doesn't know why. So, I called Dr. Marks and let her know what he said. She called him up and he was going to send her the paperwork. She told me that she would speak to the secretaries of the neurosurgeon (Dr. Steineke) to see if he can see me before my appointment on March 2nd, because apparently the pressure is affecting my eyes now. My eye sight also took a turn for the worse since my last visit with Dr. Sorkin in October. So right now, I'm waiting to hear from Dr. Steineke's side. My cousin that had the surgery is doing great, she said that recovery is lengthy but worth it. Right now I am open to the surgery, because between all the pains, the pressure in the back of the head and the pain in my neck are getting worse. I'll keep you posted. And if I have surgery I'll try to write as often as possible.
  • So many people live with this and never even know it. That's why I always have encouraged people to educate themselves about their symptoms and challenge their doctors when they feel in their hearts that the diagnosis doesn't fit the symptoms that they are feeling. I believe that we have to keep at it and never give up. I'm so happy that this family did just that and their son will have a completely normal life now. Thank you so much for sharing.
  • I am like you in that I don't want to be medicated for the rest of my life. I want the problem fixed not triaged with a band aid. I'm facing that right now with shoulder pain since I had ACDF surgery in Oct. I'm tired of the medications and have been searching all over for alternative treatments. My last hope is deep tissue massage. I really pray this is the answer so that I have one less symptom to deal with. I have enough else going on and would like to eliminate this one last remnant of my cervical surgery.
  • my two daughters have chiari malformation hydrocephalus and syringomyelia. they were diagnosed at age 1yr and at age 9 months. they have both had thirty spine and brain surgeries of different sorts and had the chiari repair twice each. there is no way to explain how this surgery saved and changed their lifes. its not an easy surgery but their quality of life would not be what it is today without having it. you would never know that there was anything wrong with them. they are now 15 and 13 years old, cheerleaders and honor students and oh yes typical snotty fresh mouthed normal teenagers.
    surgery has its pros and cons, but if your miserable from the chiari and the syrinx maybe you should get another opinion just so you know you have covered all your bases. find yourself a good neurosurgeon I dont think an orthopedic surgeon should do this type of surgery. good luck. youll do well when your in the right hands.
  • I have had the surgery, and going to have another one soon, my symptoms before were almost life threatening,but afterwards, they were managable,Imcphers I know how you feel
    but in my opinion the surgery is well worth it,it shoul,d relieve a lot of the pain,If you have any more specific questions I will be glad to answer them I have had the chance to talk to and have friends that work in the field.
  • well would you believe I couldbt find the site again . anyway always remeber to get a chairi expert to do your surgery . That is a must . they are all over the US . Come to where I hang my hat www.asap.org for more info . Byeeeeeeeeeeeee
  • Is a wealth of information. I'm so glad that right now I'm not a surgical candidate. I actually saw my Neurologist the other day about my on going headaches and instead of calling it CM and getting me all upset and worried again he called it that thing in the back of my head. Having a good Neurologist is half the battle. He keeps me in check and out of pain as best he can. But it's good to hear from people who say that they don't regret having the surgery and are actually better off for having had it done. It adds a level of comfort for me.
  • In 1988, I had surgery to decompress my cerebellum, the compression that had been caused by Chiari. They performed an occipital window and laminectomy of C1 and C2. My syrinx was also in the C5 area and progressed downwards. Thank God for MRI! Until then, no one had been able to diagnose my problem and had been telling me there wasn't anything wrong with me. Surgery was effective to a point. I continue to have some (SOME!) residual deficits but am a lot better than I was or would have become. I have to be careful to notify anesthesiologists to not hyperflex my neck when they entubate me so they won't put undue pressure on that area of my neck. I also have to support my neck and head a bit when I look at tall buildings, into the sky (at fireworks), etc. If I don't I sometimes feel as if I may black out.
    Everyone's Chiari is different and everyone's deficits are different. I have met 2 others with Chiari and their symptoms were very different than mine, so was their treatment.
    Good luck! If I can be of any help, let me know.
  • Hi, Suzanne...
    Your post interested me. Are you aware that the National Institutes of Health are looking for blood relatives with Chiari? The condition is rare enough that they want to know of afflicted members within the same family to ascertain if there may be a genetic link. As I recall, they take a DNA sample (now probably from an oral swab) and do the research. If you go to their website, you should be able to track down this study.
    Continued wellness to your girls! What a horrendous journey you have all had.
  • Is the diagnosis of a syrinx the same as Syringomyelia? I have a cyrinx from t-1 to l-1. Nuerosurgeon said to wait on treatment since I just had cervical fusion.
  • I'm new and just wondering if anyone out there has information on these conditions. I've done some research buy I am not coming up with much. I would appreciate any help that anyone can provide.
  • Hello my wife has just had the Chiari and decompression surgery on June 10, 2015. She had some problems with loss of feelings in her arms and hands and the terrible head aches before the surgery. Now that she has had the surgery she has numbness in her legs and her arms. She has started physical therapy to learn to walk properly and to stand with her eyes closed. Does anyone have a clue about the numbness. She also had a 7mm syrinx the dr say has collapsed since the surgery. If anyone knows about the numbness and if the feeling came or will come back please reply to this post. Thanks.
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