Needing Advice

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My problems started in nov 2014 with severe headaches and my hands going numb. i didnt have a pcp so i saw a doctor in town who said the problem was with my neck and without my permission he proceeded to crack my neck several times. i left his office in more pain then when i got there. that same night a friend of mine who is a chiropractor told me to come to his office where he found my neck was dislocated. after treatment a few days later i was still in pain. I then was sent to an orto doctor who i had seen for a year he did cortozone shots and did xrays and finally said there is no curvature to my neck and he didnt knoow what else would help me. in 2015 my syptoms continued to get worse at this point the headaches are still there and my hands arms and feet are numb and tingly. i had 2 siezures so they sent me for a eeg thinking that was the issue. they also treated me with shots of magnesium and potassium and torodol thinking it may be cluster headaches. after my eeg he sent me to a nerologist who thought it was ms because at this point im still having headaches and pain throught my body and numbness he ordered a mri i seen him one time and he was to call with the results and tell me what they could do to help me well the staff forgot to call me and when they finally did after a month the nurse said. your results are back you have chairi and we are working with you insurance to find a nerosurgeon for you to see oh and by the way try not to cough or sneeze to much because you can die. talk about stress. i was floored at the way i was being treated but then after a month of fighting with the insurance i found a nerosurgeon who i could see. so i have been going to him for a few months now and he has horrible bed side manner hes in the room with you for 5 mins. he has ordered many test. so far i have had a cine mri and a ssep test. he said the cine mri wasnt helpful it does show chairi. the ssep test has shown i have a delay in my right leg. he has now ordered an emg on both arms and said to make an appointment with his nerololgist for pain releif and after the test come back he will talk decompression surgrey but he doesnt know if it will help me. so now i have horrible headaches and numbness in both arms and legs (not all the time) my memory sucks floaters in my vision and have lost hearing in my right ear. i feel like im loosing my mind and im forced to treat myself for pain. No Doctor has taken the time to explain anything that is going on with me. any advice you can give would be great im a mom of two boys who need me .

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  • Posted

    Sorry to hear you are having a terrible experience!! My best advice: 

    A) get a different doctor.

    B) YOU HAVE CHIARI- THIS has been confirmed!!

    If you think about this logically: You have a large brain and the skull is too small. So part of the brain is being pushed against the brain stem and part is being squeezed through the foramen magnum which is the hole in the skull where the spinal cord comes in. If your brain is going through the hole, that displaces fluid..Cerebral Spinal Fluid.  So, since your brain is being squished, that can account for a whole slew of symptoms!! 

    Here is the Common Symptom List:  

    Severe Headache and Neck Pain---Most Common

    Dizziness

    Vertigo

    Disequilibrium

    Visual disturbances

    Ringing in the ears

    Difficulty swallowing

    Palpitations

    Sleep apnea

    Muscle weakness

    Impaired fine motor skills

    Pulsatile Tinnitus

    Chronic fatigue

    Painful tingling of the hands and feet

    Scoliosis

    Numbness in extremities

    Memory loss

    Back pain

    Nausea

    Gag reflex issues

    Neck pain

    "Red Flag" Symptoms 

     

    The "Red Flag Symptoms" are related to brainstem compression; they generally occur in Chiari cases which are compounded by basilar invagination, basilar impression, retroflexion of the odontoid, and similar disorders. 

    The "Red Flag" Symptoms Are: 

    Severe swallowing problems

    Tachyarrhythmias

    Severe nausea (the kind that makes you waste away below the 90 lbs mark)

    Central sleep apnea

    C) I don't know if you CSF is blocked or how far your tonsils extend through the foramen magnum- that is probably on your MRI's.  The Cine MRI would show if there is CSF blockage. Get copies of all test results so you can research everything. 

    D) IF your NS is a jerk, get a different NS. UNFORTUNATELY, most NS do not know much of anything about Chairi as it is a rare disorder. It is a congenital disorder, which means you were born with it. 

    YOU can do a search and find more information, but I can't post a link to it, as they will delete it. I would suggest searching for anything titled Chiari. There are several sites out there. They describe the surgery. 

    E) I had surgery June 2. It is a 4-5 hour surgery. They lay you flat on your stomach and have your head positioned through a hole. They will make a slit in the back of your head, pull aside muscle and tissue and then on the bone, they cut out a small area. This is to open up MORE room for the brain. They may also cut off the top of the cervical vertabrae. My Neurosurgeon also cauterized the tonsils so they would shrink up into the skull. Then they attach a dura patch to the hole where the bone was and lay everything else back down. Post surgery, I was on lots of painkillers and remember limited amount. I was in the hospital 4 1/2 days. After leaving the hospital, you will be weaned off the painkillers and will be able to go to the bathroom- I also had a walker. Your leg muscles get really shaky and you have to strengthen them back. The worst thing I had was nausea from the painkillers. I got some nausea meds for that. Then you just REST and REST and slowly build strength back up. I took Hydrocodeine for pain and had ice packs on my scar. I was able to go fly on a plane three weeks later.

    You aren't allowed to lift more than 5 pounds for several weeks and will probably need help with kids, depending on what age they are. Kids may be able to help you by fetching things and getting you some popsicles. 

    F) After surgery, you will likely go back to see your NS in 5 weeks for a check up. After my surgery, I had vision back, balance back, dizziness gone. But you may have some residual effects which don't go away- which makes sense since your brain was squished. 

    Anyway- Take my advice and get a different Neurosurgeon since the one you have sounds awful. Also, CALL the person in charge of the DOCTOR OFFICES and complain. All doctor offices have an office manager or a doctor manager who handles customer service.   I find that things go alot faster when I do that!! ALSO PESTER PESTER PESTER!!!  I had to pester to get my MRI Cine scheduled and Pester to get my Dr. Appt Scheduled and PESTER to get my surgery Scheduled!!! 

    GOOD LUCK!!!

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  • Posted

    Hi, I know some of the symptoms you have. I had the severe headaches, that do not go away, the numbness and tingling in my left arm. My memory is not the same and my vision is like looking through a sheer curtain with floaters in my left eye. I had the chair surgery on 5/9/26, I went to all kinds of MDs, had all kinds of tests before i was sent to see Dr. Heffez. He looked at all the results, and I had the surgery. He and his staff were very kind. I am sorry you haven't found better MDs, I am still recovering, I now have back of the head and neck pain. Still have the numbness and tingling. My memory still isn't the best. My vision is no better. They say the worse the symtoms are and recovery may not be completely better. I still hope for the best. I will say my constant headaches is only the post surgery ones and do go away when I get the rest. I do have the neck pain & stiffness. The MD said I could have shots to help, but i am trying to wait it out because I am so sick of all the shots and medicine i was taking for the last year and half, I can't stand the way they make you feel so I use as little as possible. I will say I have more energy, I work full time, go for walks with my dog and I enjoy working in my yard and garden. As bad as some days get I try to keep busy, Try to see another MD and don't give up. I am feeling better every day, and I hope you do soon too. Best wishes.

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    • Posted

      Hi Shadow, reading you rpost, just try to take it easy...eventhough you feel better, just remembr thei nside is still raw, if you do to much you are ending up in agony...so be kind to your self. We are the lucky one I suppose, my headache , numbness, faintetc has gone away,but I still have pain and ache on the feet and spine so I take yoga twice and now do it at home each day. I am free of drugs - but I keeppraying my neck, body with magnesium and taking Vit D to help healing the bone
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  • Posted

    Hi Amanda, sorry to hear about your condition, I have been there, 2 months after decompression is the worst, as long as you listen to your body (take it easy) after decompression, you will be fine. Get second opinion if need be..try to take breathing exercise (I know its hard) magnesium spray, Vit D and selenium helped me in the past. Just take it easy..you will get through it
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