One doc say 1 thing and another says something else!

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My entire life i had issue's with headache's,dizziness,concentration, memory, periods where i would get so dizzy i pass out, I would tell my doctor about my symptoms and she would always blame it on my back, cuz i have also always had issue's with that, i was diagnosed with scoliosis when i was about 17, DDD a few years ago, i had a nerve blockage done, but it did nothing for me or my pain, the wanted me to have it done again but i refused seeing how it didn't do anything but make my problems worse the first time, My symptoms such as my headache's and stuff subsided for awhile so i was trying to live a normal life, still had back pain, but was prescribed Gabapentin for that, which didn't take the pain fully away but i was able to manage it better. One day i woke up to get ready for work, i felt weird, nauseous, headache, and weak, but i stuck it out, when my shift ended i was walking home and i vomited twice, it was yellow, foamy, smelled horrible, my fiance kept telling me to go to the hospital, i don't like hospital's, but it lasted 3 day's, so the 3rd day i decided to go, they did blood work, and other testing, came in and said they found something large in my stomach, I was admitted to have a endoscopy done, which came back normal, so then a ultrasound, normal, test on my gallbladder, normal, last step they did a intervaginal ultrasound, now that showed a cyst on my right ovary, which i am confused cuz the bulge, which is visible and they said they found was on the left, still doesn't explain my symptoms. Anyways since that day i have not felt normal, headache that has not went away, nausea, dizziness, confusion, forgetting things, which is getting worse, when walking my body feels like it's pulling to the right, or down, poor balance, blurry vision, kinda like a glossy film over them, and a few other things, but one day i awaken in the middle of the night with a headache that felt like someone or something was just squeezing my head, felt like it was gonna explode, it was excruciating, once again my fiance begged me to go to the hospital, but after the 4th day i caved in and went, doctor asked if i ever had any testing of my head, my doctor isn't one for radiation, so at that time i have not, so he did one, He came in within 10 mins of my test and said the ct scan showed a Chiari, he gave me a shot for my headache which didn't touch it, he refered me to a neuroligist, when i went to see her she was rude and said there is no way that's what it is and said she believes it is fibromyalgia, and ordered me a MRI, which i had done 2 weeks ago, My results came in the mail 3 day's ago and yes it definitely is Chiari and in the letter states they believe that is what is causing my symptoms, now today a secretary from her office calls me and said their was a typo error and that my symptoms are not coming from the Chiari, but from these discussion's and from google my symptoms are exactly the same as everyone explains, and exactly what i read online, she asked me if i wanted her to refer me to a neurosurgeon, of course i said yes, cuz my symptoms are coming from something, I believe it is coming from Chiari but i am just curious if anyone else had this happen to them? I am just confused how they can make a typo like that, and why my symptoms are exactly what is explained with Chiari? Any advice is greatly appreciated as i am new to this, but they definitely said i had since birth, i don't know much about anything, I also don't like doctor's of any sort, hospital's or anything of that nature, but i am so sick of feeling like this, hurts to walk, can't get outta bed half the time, hurts to bend, move my head, all i wanna do is sleep, i never wanna get up, i could keep going, but please if anyone has any advice or recommendations let me know. Also so my discussion is not in paragraph's, my phone won't allow it, i have tried and i don't have a computer.....Thanks

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  • Posted

    Dear Heather,

    I am so feel empathy of how you are feeling, that is definitely chiari..and not trying to scare you ..its going to get worse if you not having surgery.I was detest the operation..but as the time went by the symptom getting worst I even became a housebound..forget about medication..none of them will help you..instead you will have more other symptoms (due to the side effect of the treatment) better is that you be very assertive get your neurosurgeon to operate you AS SOON AS POSSIBLE (that is due to my experience) the soonest I came out of the surgery all the symptom disappeared...I am now drug and pain free and my quality of life back, except I have back pain (AS I LEAVE IT TOO LONG FOR HAVING THAT SURGERY) ...but make sure you choose the experience Neurosurgeon.if you live in the uK..you should ask to be referred either Dr Flint (QE Hospital - Birmingham) or Walton in Liverpool - make sure you ask the surgeon you are going to see :

    1. How often does she/he operate chiari patiens

    2. What is the success rate

    3. How confident he/she is to do yours

    If you are living in th eUS - contact the  MaYO CLINIC  they can do it for you or inform you where the best surgeon, in the meantime..take it easy.off work completely ..rest yourself...listen to your body..as well as keep a gentle move about..(5 - 10 minutes slow walk) each day..drink plenty of water (2 ltrs) take some magnesium citrate thats help (A BIT)..medication will not help you at all...I am on everything..but in the end this is an anatomic issue not disease...please let us know.how are you keeping with your health care professionals treatment and update us..GOOD LUCK

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    • Posted

      Thank You!!! I am already housebound, as it hurts to even move, i don't even have the strength to leave the house, my doctor recommended i stop working back in June, so i been struggling not only with my health but financially, i am just getting frustrated as all the doctor's well the neurosurgeon is making me feel as if i am crazy, telling me that my symptoms are not coming from the Chiari, everything has gotten worse, all i wanna do is sleep, i can go to bed at 8pm and sleep till 3pm the next day and still not wanna get up, i feel foggy all day everyday, don't feel like myself at all, my children even said i am different, which makes me cry, i am so weak, have no energy to play or do anything i used to do with them, i mean i have always had issue's but also had good day's, I haven't had a good day in year's, but been worse the past few months, well since June, i am sacred to even go to sleep cuz i am afraid i won't wake up, as i never wanna wake up anyways, my eye's are always so heavy and hurt, everything hurts 😟. You said after your surgery all your symptoms disappeared? But i am afraid cuz like i said i have always had a bad back, had surgery and it only made thing's worse, so i am afraid that it will get worse as i read everyone with Chiari is different, when the neurosurgeon called yesterday and told me my symptoms are not related to the chiari i was dumb founded, Now they wanna do a bunch of other tests to figure out what is causing these symptoms, especially the numbness/tingling i get in my back that goes down my arms and legs into my finger's and toes, i know it's the Chiari, they also didn't do a MRI of my back which also confused me, my scoliosis and DDD was found on x-ray's, but how will we know if i have a shrinx, or if anything else is wrong that is causing the numbness/ tingling? I am just getting frustrated with all these doctor's 1 saying 1 thing and another saying different...I live in Lewistown, PA and here we don't have very many or even very good doctor's so i been traveling to State College but she seems not to be any better, so any recommendations would be awesome, i want a experienced doctor and that's my biggest fear! I will definitely keep everyone here updated, Thank You so much for understanding and not making me feel crazy!

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    • Posted

      Dear Heather,

      You are not on your own, the issue is that people like me who have success result does not seems to join this website anymore...I feel though it would be nice just to encourage other to get the surgery as soon as possible..you are right every one is different..but all the surgery have a risk..you have to think whether the risk out weight the benefit ..its you to decide..at the end of the day..I always think..I ll take my chance to have a better quality of life, its different then a back back..what happen with your back?

      Do call Mayo Clinic ..

      Or:

      1600 Rockland Road

      Wilmington, DE 19803

      Get Map & Directions »

      Learn More About This Location »

      For Appointments: (302) 651-4200

      Phone Numbers:

      412-647-3685

      (within the U.S.)

      01-877-320-8762

      (International

      Dr. Bryan Bolinger

      No reviews · Neurosurgeon

      27 Sandy Ln · +1 717-242-7981

      WEBSITE

      DIRECTIONS

      Dr. Christopher P. Severs, MD

      No reviews · Neurosurgeon

      21 Geisinger Ln · +1 717-242-4200

      WEBSITE

      DIRECTIONS

      Geisinger Family Health Associates - Lewistown

      1.0  (1) · Pediatrician

      400 Highland Ave · +1 800-230-4565

      Open until 19:00

      Dr. Bryan Bolinger, DO

      Neurosurgeon

      "The visit was great, Dr. Bolinger did a wonderful job with my surgery & follow..."

      Geisinger Holy Spirit Camp Hill

      423 N 21st St, Camp Hill, PA 17011

      Within 45 miles

      —No availability these days.[Dr. Andrew Conger]

       

      Dr. Andrew Conger, MD

      Neurosurgeon

      Geisinger Medical Center

      100 N Academy Ave, Danville, PA 17822

      Within 60 miles

      —No availability these days. Other Providers

      [James R Fick]

       

      James R Fick, MD

      Neurosurgeon

      1850 E Park Ave, State College, PA 16803

      Within 25 miles

      —No availability these days.[Steven J Schiff]

       

      Steven J Schiff, MD

      Neurosurgeon

      212 Earth Engineering Sciences, University Park, PA 16802

      Within 25 miles

      Give a few of them a ring - ask them who are the neurosurgeon special in chiari - if they can recommend some one..Please look after yourself

      GOD BLESS

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  • Posted

    Hi so sorry for how ur feeling. I s treated for epilepsy since I was 14 months old. Had all the same issues as u since I can remember. I had 2 Chiari brain surgeries when in was 17 years old always being told nothing was wrong with me. My. Chiari has rapidly progressed over the last 3 years and I now how on top of everything I already had I now have been diagnosed with Torticollis, scoliosis, severe Lumbar DDD and the Chiari has progressed down to C7, and migraines that have become daily and multiple times a day, I take so much medication for severe deoression, anxiety, 20 my Norco every 4-6 hrs, nausea and dizziness meds, and Gabapentin however i stopped the Gabapentin due to rapid weight gain within the last 3 months. I want from 176 up to 254 in just 3 months due to the side effect of weight gain from the Gabapentin and other meds I was on that I quit . The surgeon here pushed me off and won't do anything for me either just says I need to see a pain management specialist. With Arnold Chiari I can get a medical marijuana card which I've Be here smoked b4 but at this point I rather try that than all these meds I'm on. I also have cirrhosis now due to all the medications over the years and yet I've NEVER drank alcohol in my life. My next step is trying to find someone in chicago that seems to be the only place that does anything or has any knowledge of Chiari.

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    • Posted

      Sorry for everything your going through as well...I also have scoliosis and severe DDD, they are saying with how severe my herniation is that i have had it since birth, so i wanna know how they messed it? I have went to my doctor about my symptoms for year's with all the same, now even more, she never wanted to do any radiation tests and always just blamed EVERYTHING on my back, i knew that wasn't it, I had the total opposite side effects with Gapepentine, i lost a significant amount of weight in just a few months, At first the doctor's where saying i had Leukemia, which they really shouldn't tell people that withput being 100% certain, but i am also dealing with stomach issue's also see a specialist for that as well, All my symptoms have gotten worse, especially the headache's, dizziness, nausea, qnd more so my memory, i forget everything and that's not like me at all and i am only 31 😟...Can't even get outta bed half the time and i never feel normal, A person knows their body better than anyone so it really gets to me when a doctor tells you or makes you feel like your crazy or that nothing is wrong with you, My grandmother used to come check on me when i was sleeping cuz i always wanted to sleep and i would go to bed earlier than her and still be sleeping at 3pm the next morning, one time she called a ambulance, I am just so frustrated and depressed.

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    • Posted

      So sorry it took me so long to reply. I been in and out the hospital. Been sick for months now and have lost 30 lbs since February 8. NOBODY can tell me what's wrong with me. I Stopped all the meds except the vitamins and the Norris for pain which don't really do much. NOTHING helps these migraines that are atleast 3 times a day now, dizziness is way worse n within the last few months I can at tolerate hardly anything to eat or drink but especially this last week I have lived on only broth n hot Chamomile tea n flavored water. Zofran doesn't work either. But all these Dr's just wanna throw more meds n say it's not part of Chiari now.... Seriously? Lord knows we needs some help and some healing only he can give us cuz I'm done with these doctors and lack of knowledge. One even told me once u have Chiari surgery u no longer have Chiari 😂😲 was he kidding I asked nope he was serious I had to tell him to go re-educate himself on this condition. I hope we all start feeling better soon.

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  • Posted

    Hello Heather,

    Like i said before ask a complete mri..of your spine so you can see if there is a syrinx..ask also a cine mri..to see if your csf flow is blocked by the chiari or not...

    There is an informative book about chiari called conquer chiari..very interesting ..a lot people have been through the same issues with doctors like you. I also had that problem.

    At the end your symptoms become only worse because of the chiari unfortunatelly if you are symptomatic ofcourse.

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    • Posted

      Thank You!!! I have already asked for a full MRI and the doc says "We don't need to do a mri of every inch of your body to find what's wrong" That is what he said, but i have more issue's with my back than anything else, and i remember when i was in the hospital for my headache's, dizziness, and forgetting everything they did a ct scan which showed the Chiari so he came in and told me and said to follow up with a neuroligist right away, when i went to see her she was rude and said "The ER doctor doesn't know what he is talking about, a CT scan can not detect a Chiari malformation, and i believe you have firomyaliga" Well seems she was wrong cuz the MRI showed i have Chiari, my entire life i always told my mother and doctor's that something was wrong with my head, i was always having excruciating headache's, passing out, dizziness, i never did good in school cuz i could NEVER remember anything, my mother always said i was fine, it was growing pains, or i was being dramatic and just wanted attention, my doctor never did the proper tests, just x-rays of my back, which was never good so that's what she always blamed my symptoms on, everything has gotten worse and new symptoms have arrived, the forgetting everything, dizziness, headache's, and foggy feeling in my head is what scares me the most 😟...But thank you i am going to push for the MRI'S that i need...I am just so depressed and sick of feeling like this and everyone making me feel like i am crazy or something, I never feel normal EVER!

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  • Posted

    Like many, I had the decompression surgery only to find the symptoms come screeching back quickly.  Browse the website of the  Institute de Chiari in Barcelona, Spain.  Their 45 minute outpatient surgery gave me my life back.  Please visit their website and read the patient testimonials and find HOPE.  God bless you.
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