Chiari, Trauma and CCSVI

Chiari 1 Malformation

Chiari malformation is a subject I discuss at length in my book along with Dandy Walker syndrome and pressure conus conditions, so I won’t go into it detail here. Suffice it to say that, among other things, Chiari and pressure conus type conditions plug the foramen magnum and verterbral venous outlets.

Recent research shows a significant correlation between trauma and Chiari/CTE type conditions. It is my opinion, that hyperflexion type strains of the cord, in which the neck overstretches as it is pulled foward by the weight of the head moving in a chin toward the chest direction, can traction the brainstem and pull it down toward the foramen magnum. On the way down it causes a compression deformation of the larger part of the brainstem in the foramen magnum. As the hyperflexion strain is released the brainstem then returns to normal size faster than it can return to its normal position above the foramen magnum creating a pressure conus/Chiari type condition.

Flexion strains of the cord cause the brainstem to get stuck due either to traction strains coming from above, such as a head stuck in the wrong position forward of the gravity line, or from further down in the spine, such as a twisted or tilted pelvis. It can also come from expansion of the brainstem in the foramen magnum. The action would be similar, for example, to pushing a cork into the top of a wine bottle. The cork compresses and deforms as it enters the bottle top. As the driving force is released the cork then expands and becomes trapped in the bottle top. If you turn the bottle upside down the wine cannot get past the cork. In the brain, blood and cerebrospinal fluid similarly get trapped.

Craniocervical misalignments may also play a role in Chiari malformations and Dandy Walker syndromes seen in newborn infants and children. Birth and childhood traumas can cause tremendous strain on an infant’s neck if the presentation isn’t perfect. Likewise, young children with developing neurological and musculoskeletal tissues are also more vulnerable to trauma.

Among other things, Chiari malformations can affect venous drainage in the brain. In this regard a new theory suggests that the cause of MS is due to chronic cerebrospinal venous insufficiency. It may play a role in other neurodegenerative diseases as well, such as Parkinson’s and Alzheimer’s. More importantly, in addition to venous drainage problems, Chiari malformations can also cause hydrocephalus in the brain above it, and cavities in the central canal of the cord below it. Normal presssure hydrocephalus, or NPH, is a key subject covered in my book. NPH is most likely the cause of many of the signs and symptoms seen in Alzheimer’s, Parkinson’s and mutliple sclerosis.

For more information about my book go to http://uprightdoc.com/ or my website at http://www.upright-health.com/

40 Responses to Chiari, Trauma and CCSVI

  1. Steve Morgan says:

    Hi
    I have been diagnosed with ACM1, my cousin has been diagnosed, with MS, and our other cousin also on my mums side of the family Has suffered migraine all his life.
    Is there a genetic consention and would the ccsvi treatment be alternative treatment to the current ACM surgury. Its worth saying that Proprandol is the drug that have been perscribed to releave my ACM symptons and it does work but as soon as I stop taking it the symptoms return stronger

  2. Janusz Banowski says:

    Very interesting. Based on this, wouldn’t a positive Lhermitte’s sign be suggestive of a Chiari etiology of CCSVI or MS? An upright MRI would be extremely helpful in these types of cases I would think.

    • Drs Flanagan says:

      Hello Janusz, Yes. A Lhermitte’s sign could be caused by a Chiari malformation. It can also be caused by spondylosis and stenosis (degeneration of the spine). Upright MRI is the best way to view these conditions.

  3. Janusz Banowski says:

    Interesting…so if this was the case with someone with MS, and they had CCSVI with downstream venous stenosis/collapse secondary to this type of thing and not some sort of valve issue, could angioplasty potentially make this sort of malformation (and by asssociation, the condition) progress in the long run by further decreasing resistance to this Chiari malformation?

    This is quite an interesting topic, appreciate your thoughts:)

  4. Jonah Leclair says:

    Hello there Dr. Flanagan,

    Is there a link to this study you could supply?

    Thanks!
    JL

  5. Pat GF says:

    I was wondering if infant trauma could be related to CCSVI. I had a very difficult breech (one-footling) birth. I know high forceps were used during the delivery. I am the only child of six to have multiple sclerosis.

  6. Donna Lewis says:

    I have read everything including anecdotal stories that has given me a strong aha moment in regard to head, spine injuries.
    Age 9/10 i had a bicycle accident where i flew over handlebars for about 3-4 ft into the sidewalk facefirst. i lost conciousness and came too with temporary amnesia; i passed out again and i came to in my grandmothers kitchen with an icepack on my face. No hospital visit was made.
    Age 17-21 (1977-1981); episodes of leg weakness, double vision and after pregnancy i deteriorated to almost complete body weakness with limbs, including neck, back collapse due to extreme muscle weakness, couldn’t chew or swallow, etc… Diagnosed at age 21 by my son’s neurologist with myasthenia gravis and was treated with mestinon and a thymectomy. 3 years later back to normal. MG in remission.

    1996 i had numbness in the bottom of my feet that moved up the legs to waist with weaness. Took 6 months off work and recovered.

    2001 i developed pars planitis and was treated with prednisone which eventually caused bout with optic neuritis and almost full paralysis which lasted for 3 months until ms diagnosis which showed lesions in brain and spinal cord.
    2004 i left work as my ms fatigue, vertigo, dizziness, throat weakness causing aspiration pneumonia and am now on LTD. I have continued to deteriorate and my left leg is very weak and spastic; both arms and hands weak and bouts with jerky tremors frequent. Also severe migraines increasing as well as 2 ruptured disks (c5) and also lower back but i can’t remember which disc.
    I would very much welcome your thoughts and comments. I live in Toronto, Ontario, Canada.

    • Drs Flanagan says:

      Hello Donna, You have a very interesting case and I think it’s plain to see your cervical spine got injured the day you flew over the handle bars and got knocked unconscious. You have signs of Vertebral Basilar Ischemia (fatigue, vertigo, dizziness, migraine etc.) and brainstem compression (arm, had and leg weakness, spasticity and tremors). It’s been many years now and you have brain and cord lesions. Nonetheless, it would be wise to get your upper cervical spine checked and corrected. You want to decrease pressure and improve blood and CSF flow through the upper cervical spine as much as possible. I will get back to you with a doctor in Toronto.

    • Drs Flanagan says:

      Donna, There is an upper cervical chiropractor in Toronto. His name is Dr. Vic Sondhi of Atlas Spinal Care, 12-4646 Heritage Hills Blvd, Mississauga, ON L5R 1Y4. His phone number is 905-712-9670. Give him a call to discuss your case.

  7. Mercedes Saiz Ortuño says:

    But, if there´s a MRI that shows lesions, can that also be because Chiari???

  8. Kolya Smith says:

    Hi, Dr. Flanagan,

    I was diagnosed with Arnold Chiari Malformation in 2002 and Multiple Sclerosis in 2003. In 2004, I had decompression surgery, adult VP shunt, laminectomy of C1-C2. This June 2011, because of my Ehlers Danlos condition and a nick by a comb at my hairdresser. My adult VP shunt pierced through my skin. I went in for an emergency revision. This time, a pediatric VP shunt was placed due my Ehlers Danlos. In September this year, my new pedi VP shunt is draining way too much and I’m having to drink 100+ oz a day to keep up with it. It’s either because it’s a pedi or because it’s malfunctioning. But because of my Ehlers Danlos, they’re waiting on changing the valve. I’ve read a lot of information with CCSVI and MS. And so I was very interested to see this subject. I’m in the state, in Boston, MA.

    Kolya

    • Hello Kolya,
      I am sorry to hear about all your troubles but thank you so much for sharing your story. Dealing with EDS can be challenging. There is a lot to be learned about the connection between the spine and neurodegenerative diseases by studying EDS cases such as yours. I think the future looks bright for better less invasive methods of CTE decompression as well as CSF control.

      I am unable to embed the link in this reply but I have a page on my other website upright-health.com you might find interesting as well. The page is in the table of contents in the Chiari section. It is called “Tonsilar Ectopia and Chiari Malformations.”

      Dr. F

  9. Kolya Smith says:

    Hi Dr. F,

    Thank you for your reply. Yes, most definitely. I agree, I’m always encouraged about the future in medicine. It only get better.

    Thank you. I just looked at your website. Dr. Milhorat and Dr. Bolognese did my surgery in 2004 and Dr. Bolognese again in 2011.

    Kolya

  10. We’re a group of volunteers and starting a new scheme in our community. Your website offered us with helpful info to work on. You’ve done a formidable job and our entire neighborhood shall be thankful to you.

  11. ginger inman says:

    I would like to see an upper cervical dr. for treatment in my area. Can you recommend someone
    in the Dallas, Tx area? Ginger in Tx

    • Hello Ginger,
      I apologize for not replying to your comment sooner but they no longer get posted when I reply to them from my inbox. The link below is to an upper cervical chiropractor in Dallas who uses NUCCA and Atlas Orthogonal approaches.
      http://www.dallasspinalcare.com/
      Please let me know if you receive this message.
      Dr. F

  12. jpepper says:

    I have three children. One of which was born using a vacuum because she had a shoulder dystocia and was stuck with her nuchal cord wrapped around her neck. My Dr was 30 minutes late to the delivery room , should have had a C fetal heart tracings were questionable for at least 40 minutes. She had a horrible bruise on the back of her head for weeks. Her balance is terrible, speech delayed and has had trouble walking. We do OT, PT, and speech therapy as well. She uses orthodics to help with muscle tone and balance. My other two are perfectly healthy. We have done two MRI’s and found a Chiari 1 with no syrinx. I think it was caused by the birth, have you ever seen or heard of this happening?

    • Hello Jeannin,
      It certainly makes a great deal of sense to me. Your daughter’s neck was significantly strained in an unbalanced, twisted and tilted manner at the time of birth. It most likely caused an upper cervical misalignment resulting in either a downward pull on the brainstem due to dural tension, or the Chiari type displacement could be blocking CSF flow between the cranial vault and spinal canal causing the brainstem to sink into the foramen magnum. She may also have increased CSF volume and pressure in the brain driving the brainstem downward. She needs to have her head and neck alignment corrected.

      • jpepper says:

        Thanks for the response. The latest MRI done at Children’s National in D.C last Friday showed crowding at the Foramen Magnum but the neurologist said there was still flow. She doesn’t seem to be in pain like headaches or stiffness but I see it dramatically in her balance. Mostly vestibular challenges make her topple over. Anyway we see the Dr to discuss findings further March 22. Any advise on what I should ask or be aware of. I want to make sure I am taking advantage of my time speaking with her Neurologist.

      • Displacement of the brainstem into the foramen magnum always alters blood and CSF flow to a certain degree, which includes blood supply to the cerebellum. It also displaces and strains the cranial nerves in the posterior fossa, such as the vestibulocochlear cranial nerve number eight. The best way to check for a Chiari type displacement of the brainstem and CSF flow is upright MRI and upright Cine CSF flow. Your daughter should get upper cervical x-rays preferably by and expert with the appropriate skills and equipment. You should also have a radiologist with the appropriate training check the upright cervical MRI for damage of the upper cervical ligaments.

  13. Susan Vigus says:

    Dr. F.
    My son has Arnold Chiari Malformation of hind brain and had surgery to correct it when he was 16 by Dr. Alan Cohen, Boston, MA. He is 22 now and has many problems. He was not the same after the surgery, he has difficulty concentrating, balance problems, lots of pain especially if he walks or does anything exerting he will hardly be able to walk. He has a small amount of fluid in his spine and we sent his films to Dr. Cohen who said if it gets any bigger he will need to get something done. We are in Lakeland, Florida and we need a good doctor to help Tim. One neurosurgeon here told him to just get on with his life that he is too young. Tim was a top student but now he cannot stay focused to pass college classes, he stays home and has anxiety attacks, headaches, etc. Have you had any experience with patients who after surgery still have many problems? Is there anything we can do to help. He is seeing a psychiatrist because he is very depressed but he isn’t taking the medicine. He is very private and won’t share much at all. He also has to be on a very rigid routine everyday that he can’t veer from ie, Has to take a shower as soon as he wakes up–the hot water helps his back and he takes a 30 minute shower, then he has to smoke a cigarette and drink coffee. If he has an appt, he has to get up two hours early so he can leave on time. Please help, any information would be greatly appreciated.

    Susan Vigus

    • Hello Susan,
      I am sorry to hear about your son’s difficulties with ACM. It’s fairly common for ACM patients to continue to have problems after decompression surgery. Your son most likely has a dissociation of CSF flow between the cranial vault and spinal canal that caused the ACM. In your son’s case, it causes too much CSF to flow out of the vault and into the spinal canal. This can cause the brain to sink into an ACM due to intracranial hypotension. It can also cause CSF to accumulate in the spinal canal. I cover ACM and pressure cones due to intracranial hypotension in my book, The Downside of Upright Posture – The Anatomical Causes of Alzheimer’s, Parkinson’s and Multiple Sclerosis. Your son may be a candidate for specific upper cervical or craniosacral care but I would need to know more about his case. Purchase of the book includes my email address and a complimentary consultation. If you are interested, you can find the book at the link below.

      http://www.upright-health.com/Upright-Doctor-book.html

  14. Ted Hill says:

    Dr. I am a 51 year old male. I am very athletic and in good physical condition. About a year ago, my blood pressure spiked to around 200/100 and I’ve been trying to regulate it ever since with medicine. Since that time, I was diagnosed with a Chiari Malformation and Syrinx. I am starting to have symptoms like blurred vision, tremors, numbness in my left arm and left foot, terrible pain at the base of my skull and a “fullness” in my head. Two questions – is there any way this blood pressure issue could be related to the Chiari? And, in your opinion (given the symptoms I’ve described), would I be a good candidate for decompression surgery. Thanks in advance.
    Ted

    • Hello Ted,
      You have a very interesting case. The BP was very high but the pulse pressure which is the difference between the top and bottom numbers should be about 40. High pulse pressures cause greater stress and strains on the blood vessels, heart, kidney, eyes, etc. The Chiari and syrinx combination make a solid case for obstruction to CSF flow through the foramen magnum as well as possible stenosis in the lower cervical spine. Orthostatic hypotension, postrual orthostatic tachycardia (POTS), benign intracranial hypertension are all associated with Chiari malformations. You need to get the obstruction corrected but first you need to find the cause. Since you are athletic, I would recommend you talk to your doctor about getting x-rays of your spine to look for malformations, misalignments, joint instability, spondylosis (degeneration) etc. A brain and cervical MRI is must. Upright MRI is the best way to check for adult acquired CTE. Depending on the cause there are different possible solutions. Decompression surgery is definitely a consideration but not where you want to start.

  15. Marlene Simon says:

    Dr. Flanagan,
    I had Chiari decompression and c1-2 lami surgery about 1.5 yrs ago, found after an automobile accident and I am still having occipital and neck pain daily especially after being on the computer, washing, brushing, styling my hair, any type of desk work, bending over, driving and even sometimes with a bm (no straining), I wake up with leg pain every am, still have my hands awaken me in my sleep because they are numb 3-4x a nite, occas feet too, sometimes rt foot goes numb and has burning, do have back burning no thoracic mri done, cervical shows herniated 5-6, at times my head just locks up and I have very poor rotation. I was just diagnosed with fibro. My NS says flow is fine-report :crowding of the cerebellar tonsils at the cranial cervical junction with effacement of the fourth and frontal tracts. CSF flow study demonstrates no significant flow through the fourth ventricle , fourth ventricle outflow tract or the cervical aqueduct on sagittal images but this is felt to be artifactual since there is biphasic flow identified in the cerebral aqueduct on the axial images and biphasic flow the fourth or a focal tracts on the axial images.
    What would cause my head to lock or stiffen up? I do have vertigo and dizziness at times and then my balance an gait are affected. Does increased sodium intake cause any of these symptoms? I was told I would not have a thoracic syrinx because I do not have a cervical. My herniation was about 18.
    Thanks,
    Lisa

    • Hello Lisa,
      Among other things, I suspect you have faulty CSF flow due to downward displacement of the fourth ventricle and crowding of the tonsils resulting in effacement of the frontal tracts. The CSF flow is equivocal and unclear. Upright MRI and cine flow study would be better for seeing abnormal flow. Increased sodium intake can potentially increase CSF volume in the brain and may aggravate your headaches. It sounds, however, like the suboccipital pain may be due to musculoskeletal irritation and inflammation. The pain for example, is aggravated by certain postures such as bending over. It also causes your neck to lock up and especially decrease rotation. The pain and spasms aren’t aggravated by straining. In this regard, decompression and stabiization surgery alter the normal biomechanics of the upper cervical spine where fifty percent of the rotation of the neck occurs. The herniated disc at C5/6 can also negatvely affects and decrease range of motion in the neck. More importantly, it can affect the thoracic outlet and cause numbness and weakness in the hands. Sleep positions are notorius for straining thoracic outlet problems. The right leg pain and right foot numbness and burning sensation may be related to the CTE or it could be due to a problem in the low back from a herniated disc to a pelvic strain.

  16. Lisa says:

    Hi Dr. Flanagan,
    Thanks for your quick and detailed reply. I get more info from you than my NS. I feel better lying down, when upright after washing my hair or just brushing my hair, being on the computer for a short time will aggravate the pain, no bending, I have occipital pain and the muscles posteriorly feel like my head is being hung and locked up with trouble rotating my head. It also starts after I brush my teeth. I constantly get this feeling of a tight occipital band or tourniquet. I find that I have to watch my sodium intake or the posterior pressure increases. My NL says that sodium does not cross the blood brain barrier. Is this true? I also just started getting intermittent pain in my right ring finger-the least of my problems. Thank you so much.
    Lisa

  17. Tanya Forgan says:

    Good evening,

    I am hoping you can help me. I have recently been diagnosed with Chiari type 1 with a 5mm tonsillar descent.
    Although the descent is not huge I am experiencing many symptoms – pressure in my head, headaches, balance issues, pains and numbness in my left arm
    and leg, chest pains and vision problems in my left eye.
    I’ve been told by my neurosurgeon not to have any spinal manipulation as it could make things worse but all he can offer is decompression surgery which ‘might’ work.
    I’m not convinced. I’m a yoga teacher so tend to look at thing holistically and know that my spine is very much out of balance. Do you think a visit to a NUCCA would be advisable? I’m in the UK but have heard that a lady in Texas has worked with Chiari patients. Any thoughts please would be very much welcome. Thank you Tanya

    • Hello Tanya,
      The degree of cerebellar descent in Chiari malformations is irrelevant. What matters is whether or not the descent is causing signs and symptoms. Females typically have smaller cranial capacties and less tolerance for cerebellar descent. Considering that he is such a highly educated skilled professional, your surgeon is remarkably ignorant when it comes to spinal manipulation. That’s as bad as chiropractors not recognizing that there are surgical solutions for some cases. While you certainly don’t want some unskilled non-professional or rank beginner to twist and “crack” your neck, there are many different low force methods for correcting the spine, including the upper cervical spine, that may or may not work, but are perfectly safe to try. More importantly, they can be highly effective especially in cases like yours. Craniosacral is a good approach but it’s hard to find doctors that have the skills to apply the correct techniques to Chiari cases. NUCCA is an excellent method of specific upper cervical correction that is well worth a try. There are other methods as well but you need someone with experience and expertise to handle a Chiari case. Dr. Heidi Grant uses a NUCCA approach and she has a post gradute degree in chiropractic neurology. I don’t know where you live in the UK but I believe her office is in London.

      • Tanya Forgan says:

        Thank you very much for your response, I appreciate it so much. I have made contact with Heidi and have an initial appointment with her in dec.
        I’m slightly confused(and ignorant) as to how the nucca could help the chiari? Is the main goal to create more space? I know I also have a twisted pelvis and functional scoliosis from year of working at a massage couch. I’m unsure where to start with correcting my spine and getting my health back? Would it be worth working from the sacrum up or starting at the atlas and working down?! I guess one small correction could help the rest align?
        I also forgot to mention that I have ended up in hospital several times with severe chest pains – almost like a heart attack. Could the Chiari have caused this? It amazes me that a descent could cause so much discomfort and pain!
        I’d just like to focus on health now and getting things better. Do you offer Skype calls at all? A consultation and chat over the phone? I’d love a more in depth chat with you! Thank you Tanya
        Ps – will get the book too :-)

      • Your welcome Tanya. NUCCA can help a Chiari malformation by correcting deformation of the upper cervical spine and neural canal which contains the vertebral veins and subarachnoid space of the cord. The neural canal of the upper cervical spine is the critical link and choke point between CSF flow in the cranial vault and the spinal canal. Obstruction to CSF flow between the two compartments can cause displacement of the brain downward into the foramen magnum. The upper cervical spine also contains the the vertebral veins which drain the brain during upright posture. Back pressure against the vertebral veins can likewise affect CSF production and flow. Lastly, the upper cervical spine contains muscles and ligaments that are connected to the dura mater of the brain through openings in the base of the skull called foramen. Upper cervical misalignments and subsequent mechanical tension can likewise cause displacement of the brain inside the cranial vault.

        The scoliosis in the lower spine is most likely compounding your problem and may need to be addressed if upper cervical correction doesn’t get the job done. Twists in the lower spine, especially when combined with upper cervical misalignments cause deformation and dysfunction of the thoracolumbar fascia and thoracic outlet that can can result in myofascitis of the chest muscles called “pseudoangina” similar to the moderate to severe chest pain associated with impending heart attacks but without the clinical signs. Pseudoangina can be successfully treated with proper corrective care of the spine. In cases of pseudoangina, it’s important to accurately assess upright posture, spinal ranges of motion, paraspinal and chest muscles for tenderness and strength of the sternocleidomastoid, trapezius, rhomboid and lattissimus dorsi muscles.

        I do offer consultation services. You will be provided with my contact information when you purchase the book.

  18. catie folmar says:

    Hi,
    I was dianosed with arnold chiari malformation type 1 in February of 2011. And had decompression surgery in April of 2011. I did have the cork screw affect you were talking about. Along with severe scarring. Since the surgery my health has gone down hill. I’ve since been diagnosed with dysautonomia with pots and myasthenia gravis. I was wondering if seeing that you have done research that links ms to Arnold chiari and ms and myasthenia gravis are linked if there could be a link between Arnold chiari and myasthenia gravis?

    • Hello Catie,
      I don’t see a direct connection between Arnold Chiari malformations ad myasthenia gravis but the signs and symptoms of ACM and MS are similar to myasthenia gravis. I find it interesting that you were first diagnosed with ACM and got worse after decompression surgery resulting in POTS and myasthenia gravis signs and symptoms. I suspect that you may have had a pressure cone, not an ACM. A pressure cone occurs when excess pressure in the cranial vault pushes the cerebellar tonils down into the foramen magnum. It can also occur due to relatively low pressure in the spinal canal that decreases brain support causing it to sink down into the foramen magnum. The outcome is identical to an ACM. Decompression surgery can aggravate a pressure cone by decreasing CSF volume in the cisterns that support the brain thus causing it to sink into the foramen magnum.

      An ACM can affect blood and CSF flow in the cavernous sinus and thereby affect arterial supply and venous drainage of the eye. Displacement of the brain (ectopia) downward in the cranial vault can also cause tension and compression of the cranial nerves that control the muscles of the eye resulting in weakness and diplopia. Lastly, blockage of CSF flow can affect pressure in the third ventricle and cerebral aqueduct that pass through the control centers for the eye in the thalamus and midbrain, as well as pressure in the cisterns that surround the midbrain that can affect control centers for the eyes and ears and pathways that connect the brain to the muscles of the body.

      What signs and symptoms do you have to indicate myasthenia gravis. Do you have weakness of the eye or eyelid muscles? Do you have weakness of the extremities? Did you have weakness of the eye or extremity muscles prior to surgery? Do you have blood work that shows you have an immunological problem?

  19. catiefolmar says:

    Thank you for responding, sorry I commented back but the webpage did not save my response. I had blood done in April of 2013 that tested positive for the acetylcholine receptor. I believe at that time my receptor levels were around a 16 normal level is 0. Prior to surgery the only problems I had with my eyes were that I would have extremely blurred vision to the point where I could not see. I did have muscle weakness prior to surgery in my extremities but was thought to be a symptom of the ACM. Since surgery I have ptosis (droop) of the left eye mostly but if I’m having a particularly bad day the right eye as well and I also have double vision and blurred vision. I have ptosis (droop) of the left side of my face to the point where I cannot make normal facial expressions. I have trouble chewing and swallowing my food. I also have extremely weak extremities and have lost fine motor skills in my hands.

    This is a list of the symptoms that have either come back or gotten worse since the surgery: Extremely painful headaches pain level 7-10 and 5-7 days of the week. Extreme dizziness, I cannot bend over without falling, the room always feels like its spinning. Balance problems, I cannot walk a straight line. I always tilt to the left or right when walking and could not stand on one foot to save my life. Numbness one both sides of my body this has severely gotten worse since the surgery. The numbness use to be just on my left side from my knee to my toes. It is now on my left side from hip to my toes and on my right side from my mid-thigh to my toes. The right side is also accompanied by what feels like ant bites all along the numb area and this happen 5-7 days a week. My right arm also goes numb from my shoulder to my fingertips. From time to time during the week the sides of my face will go numb as well and usually does not include the top of my head. But when it does it is the opposite side of the head from the side of the face that is numb or it could be described as diagonal. I have hiccups every day and it is always one hiccup that is never followed by any more. Memory loss short term and long term. Severe hand tremors. I black out 3-4 times a month and have seizures 2-3 times a month. I never seizure until after the surgery. Diarrhea and nausea. Ringing in the ears. My body twitches when I am resting. I have night sweats. My hands and feet are always colder than the rest of my body, my family refer to them as ice. Fatigue. And cognitive function is not what it use to be, I feel very dumb.

    Family background. My maternal grandmother had Arnold Chiari Type 1 as well, it also runs on that side of my family.

    Please help direct me in which doctor or specialist to see. Or if you have any other suggestions it would be greatly appreciated.

    • Hello Catie,
      Your case is very complex. You probably inherited the same design in the craial vault as your grandmother. You most likely have a hypoplastic (undersized) posterior fossa relative to the size of the cerebellum. I strongly suspect you have a pressure cone and the decompression surgery made the pressure differential worse between the cranial vault and spinal canal causing the brainstem to sink into the foramen magnum. Neurosurgeons are the experts on ACMs but CSF shunts and decompression surgery are their only options for you. There is a slight chance that particular therapies used in manual and physical medicine could help to manage your condition and relieve some of the symptoms but there are very few if any competent professionals that are prepared to handle complex cases like yours.

  20. catiefolmar says:

    I have seen several doctors and have been told by one of the Neurologist that I am “grasping at straws.” The majority consensus is that nothing more can be or should to be done because I have had the decompression surgery and that time will improve my symptoms. I am willing to come to you if you will take me as a patient, or if you will suggest another doctor, please help. I am only 22 years old and I live in Alabama. THANK YOU for your time and willingness to talk with me.

  21. Hello Catie,
    You are a complex case with limited options but there are some options worth trying to manage your condition with mimimal risk. First, I need more information. I will contact you by email. If you don’t hear from me in the next couple of days let me know.

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