I am a 48 year old male who was adopted at the age of one. I was born to a 16-year-old mother who was living on her own. I bring this up because from what I understand malnutrition may be a contributing factor to Chiari Malformation. My adoptive mother states when I was adopted at the age of one I had been diagnosed with having difficulty raising my arms as well as throwing up frequently. Once again things I understand to be symptoms.
Growing up I led a pretty normal life without even having headaches very often. About a year ago I was diagnosed with having migraines with aura. At that time they placed me on gabpentin and played with the dosage until I was able to at least live with my daily headaches. Usually, I have an underlying constant headache with “ice pick” headaches 8-12 times a day.
This last summer coupled with my daily headaches I started having neck pain. I had an MRI done and found my C5, C6, and C7 are in degenerative disc disease as well as arthritis in all. Since this pain was not getting better I returned to my family practice doctor who sent me to a neurologist. While at the neurologist I explained my symptoms: Neck pain, Headaches, Balance Problems, Numbness in hands and feet, Pain in raising my arms even to put a shirt on, Fatigue, Dizziness, Double-vision, After eating it feels like my food is stuck in the top of my throat, etc. In my official diagnosis, he wrote it was a headache he thought would go away. He did order an MRI which showed my cerebellar tonsil on the right side to be low but not out of the “normal range”. He has raised my dosage of gabapentin to 900 mg 3X a day (which my family doctor believes to be very high). He also thought it would be fine with me going back to work with all of this going on. Now mind you I travel frequently for my job and spend 80% of my day driving to see clients. At times this can be up to 450 miles in a day. My bosses at work have been great about this and I am on FMLA at this time.
My question is do you think CM is a possibility that should not be ruled out? Should I find a new neurologist? (I live within two hours of Mayo Clinic in Rochester and am willing to drive there) Do I keep fighting this until I get some relief? My daughter told a coworker only about my headaches and her coworker explained CM to her as he daughter has it. My daughter said it gave her chills because it was so similar in symptoms.
MRI’s are performed to match specific locations of your body because of time and healthcare costs. From your information, it sounds like you definitely had a spine MRI.
However, it is a brain MRI that would detect Chiari. Also, I have 2 syrinxes and one thing I have learned is, they don’t just do an MRI of your whole spine. However, they can if needed. With my experience, they do it by Cervical, Thoracic and Lumbar sections. If you want to totally rule out Chiari, get an MRI of the Brain. This should give you quite a bit of information. Hope this helps.
Hi parks68,
I went through the diagnosis process a little over 2 years ago, I had one single symptom… Exertional headaches. I felt like my doctors wanted me to have more symptoms so that the diagnosis would make more sense or be a ‘text book example.’ I had to go through an enormous list of symptoms each doc visit… This list is very similar to your list of symptoms. It is chilling like your daughter said how close your list of symptoms are actually. I would look into finding another doctor and getting a second or even third opinion. All individuals operate with their own set of biases and you could be caught in one of his. Definately get a brain MRI if you haven’t already. I would be scared to work with that list of symptoms, especially driving all those miles. I was in fleet before I got my degree and know how hard on your body driving can be. It sounds like going back to work could be putting yourself in danger. Best of luck to you, keep us updated if you’d like to.
Thank you so much. I had a neurology appointment today and he is willing to try different testing so at least we have a game plan at this point. I appreciate your input and will keep you in the loop should something more happen.
I have had cervical and head MRI’s. My neurologist has finally agreed (today) that something is going on. I have an appointment with ENT, EMR to see if the dizziness is migraine related or something else. They are also going to check for nerve damage in my leg. We also changed medicine. Hopefully something will come from one of them. Thank you for your response.
They are sending me to Ear Nose and Throat for dizziness to see if that is a contributing factor. They are also going to do a EGN test where they stick electrodes in you to see if there is nerve damage. They are going to test my left leg and see if that is contributing as well. I guess trying things and ruling them out is a plus. I am still going to ask my PCP to see if he can get me to a specialist
EMG test a good idea is my understanding
ENT might be too–I was curious because I had a bad bout of vertigo recently–I was complaining of mild dizziness and nausea to my doctor and she did some test to me–I didn’t know she was going to but she moved my head to the right really quick after having me sit up and lie down and nothing really happened but they monitor your b/p with that to see if it gets lower in certain position–mine was really low the last couple times I saw her but its always been fairly low–but anyway a few days later a horrible vertigo attack came on and vomiting—it may have been food poisoning but I guess with bad vertigo sometimes you could get sick too. It also may have been my doctor moving my head around because that can move ear rocks.
She referred me to ENT and a friend of mine that had bad vertigo some years back told me they might do tests or show me exercises that involve me moving my head in certain positions for ear rocks. Some of those sort of exercises are in the guide on this site contributed by a knowledgeable member Gabby Jazzy Pants but with warning to be cautious because sometimes certain head movements can bother chiari. I have significant cervical stenosis and djd, ddd, bulging discs at 4 levels and a neurosurgeon told me years back possible chiari–I havent pursued surgery. Anyway I cancelled my ENT evaluation in Dec and decided to just monitor the frequency severity of vertigo for now because I get flared up by moving my head and neck around and have not been able to tolerate PT for neck very well in past. I know pretty much after years of tons of different PT and OT etc what I can handle so I don’t want to be put in position of having to deal with explaining all of that to them if I am not sure I want to go their route. So long story short is my advice is go in and hear what they have to say but base your decision to go along with any invasive seeming tests or exercises on your experience of what you know is ok for your body. One of my regrets is putting myself trustingly in the hands of many experts years back when new disability was emerging &some interventions things made me worse—ie chiropractic, rolfing, certain PTs, cat scan of neck with neck in extension etc Since surgery is last resort and not a sure fix its good to try not to make things worse
that said I would love to hear how it goes for you and if its helpful as I may eventually go the ENT route. fortunately the bad bout of vertigo was a one off so far --well there was one other incident a couple years ago like that–and I can handle the amount of light headedness and nausea I get naturally. That flare put it in perspective–going to leave it alone. But I can’t even take a shower to wash my hair for years now and I have to sleep on my left side the last couple only I get flared up with pain dizziness etc so there are narrow parameters of movement for me. I am going to consult a PT again that I trust to see where could gently enhance things for myself again right now as i age.
I am able to take regular walks and work full time with accommodations of lying down intermittently and doing work in that position on phone or laptop.
