Chiari Malformation

Exhausted trying to get a diagnosis of hEDS.

But now I'm under pressure because my two sons show symptoms. One is Autistic, one is pending assessment. And me? After seeing all the paperwork I realise I'm an undiagnosed autistic adult at 46.

This is on top of, my sister's Chiari Malformation, my late Father's Ankylosing Spondylitis, my Fibromyalgia (supposedly), Hypermobility etc.

Having a hell of a week. As I got full records from the doctor to check over for insurance, and I was diagnosed with CFS & Hypermobility Syndrome in 2000 - the doctor NEVER divulged it to me.

#AnkylosingSpondylitis #Pacemaker #Fibromyalgia #MastCellActivationDisorder #ChiariMalformation #CeliacDisease

Hi, my name is MC72. I'm here because

#MightyTogether #Migraine #ChiariMalformation

Hi, my name is Ljharrison91. I'm here because

#MightyTogether #Fibromyalgia #Bipolar2Disorder #Migraine #EatingDisorder #AnorexiaNervosa #BulimiaNervosa #OrthorexiaNervosa #OCD #Asthma #PTSD #ComplexPTSD #GastroesophagealRefluxDisease #IrritableBowelSyndromeIBS #Gastroparesis #EhlersDanlosSyndrome #MastCellActivationDisorder #PosturalOrthostaticTachycardiaSyndrome #Hypoglycemia #MajorDepressiveDisorder #SocialAnxiety #GeneralizedAnxietyDisorder #AutismSpectrumDisorder #ADHD #Alpha1AntitrypsinDeficiency #ChronicPain #ChronicIllness #RestlessLegsSyndrome #NeuropathyHereditary #TemporomandibularJointDisorders #Bursitis #OccipitalNeuralgia #TrigeminalNeuralgia #ChiariMalformation #Dystonia

Hi, my name is EES041214. I'm here because

#MightyTogether #Depression #Anxiety #Migraine #ADHD #PTSD #EhlersDanlosSyndrome #ChiariMalformation #DegenerativeDiscDisease #Epilepsy #OccipitalNeuralgia #Dystonia #PosturalHypotension #TemporomandibularJointDisorders

Hi, my name is SwissMountain83. I'm here because I am interested in how some of you have dealt with your Chiari Malformation diagnosis and how to improve your daily life with the symptoms that you experience. I am hoping to find out too if anyone has had success with any forms of alternative medicine as well. Looking forward to being able to relate to others, as I have felt very alone in my painful days, but am relieved that there has finally been a diagnosis. Thanks for any info!!

#MightyTogether #ChiariMalformation

Psoriatic arthritis in my spine my hands and fingers my left wrist my left collar bone which is badly eroded my left hip two types of psoriasis guttate and plaque which appears on my chest my torso my legs raynauds phenomenon in my hands I do struggle to stay warm I have scoliosis on my spine which basically my spine does not run in is correct shape thus causing a left lumbar muscle imbalance which causes untold lower back pain I have Chiari malformation type1 and syrinxes one at C2 then one at C6/C7 which goes all the way down my thoracic spine to the top of my lumbar spine at C6/C7 I have a bilateral herniated disc which is pressing down on a nerve that runs through my (left hand side ) through my upper back through my left shoulder blade over my left shoulder down my arm all the way down to my fingertips because its bilateral even if use my right arm it can send the most breathtaking horrific stabbing burning nerve pain all the way from my neck to my fingers if the muscles in my neck tighten then releases nerve pain that is like a lightning bolt of nerve pain that shoots through the side of my left neck through the side of left skull behind my left ear through my left temple and behind my left eye I once had 17 of these in one day the first nearly through me off my feet I take meds for the pain but they sometimes work other times they don't nerve can not be totally brought under control I also get nerve just under my skin as the dermatomes get aggravated this is a horrible burning stinging pain where I can't bear to even touch my skin I have cubital tunnel syndrome on my left arm I had a fall from 11feet in May fracturing T12 and my Sacrum I recovered from this only to have someone slam into the back of our car not our fault they claimed liability next day the muscles in my whole back slammed tighter than safe which has increased all of my preexisting conditions and fractured vertebrae this has weakened my hip muscles from the top of my hip bone through my buttocks then September my breathing became laboured so only shallow breaths doing anything even slightly physical was enough to have me gasping for breath I left it which is not normally me as I am proactive about my health middle of November I decided to go and seek medical advice from my doctor who ran blood tests then more blood tests then more blood tests I kid you not my blood pressure was taken which was high in the 180 over 111 mark whilst awaiting my results I decided to have a shower which was tiring enough getting dried wore me out totally I came downstairs just in my underwear to sit on my settee to get my breath back just as I did there was a knock at the door which I answered it was our window cleaner wanting his money which was upstairs I stupidly tried to take them faster than I normally would so by the time I got upstairs I was really gasping for breath I grabbed his money and went back downstairs to my living room to find a £1.00 coin I went back to the front door my head started spinning my legs were giving way then crash I hid the cupboard door under our stairs the bang give me a startle I reached my front door handle and pulled my self up the window cleaner was beside himself I give him his money then went to my living room really really struggling to get my breath a tight band around the middle part of my chest I lay there just calming myself down my wife was out so I phoned 111 to ask for advice answered their questions next thing I am being asked to do is get my wife to come back home as I was going to be Bluelighted by ambulance to hospital paramedics arrived done their tests then 8 hours later after more blood tests and a chest Xray I was allowed to go home next day I got my results my gp ordered an ultrasound on my abdomen to take a look at my liver,gallbladder kidneys and pancreas they all checked out fine my doctor said your triycigcerides were 11.85 which is deemed very high my SLT levels were in the 200s which is extremely extremely high I also had hemolytic anemia which is when your bone marrow is not producing enough normal blood cells that contain oxygen and B vitamins my bone marrow was producing large abnormal blood cells which do not have much oxygen or B vitamins more blood tests were taken even one for lymes as I had been bitten by a tick during the summer this came up negative I was advised to come off one of my meds which may have built up to toxic levels in my liver I then had some repeat blood tests plus ten more the wife was with me this time and was astounded I was asked to monitor my blood pressure for 1 week whilst also starting on blood pressure meds when I had been in the hospital my blood pressure was 202 my blood pressure has been all over this week one of them reading 122/111 while my pulse was 98 I wanted to test a theory by going upstairs a couple of times the theory was is that I was not getting enough oxygen through my system its all up in the air at the moment until I hand in my blood test results I know this site is about depression and anxiety but having all of the above just makes it 10 times worse I also have a formal diagnosis of PTSD I am down to get CBT but guess what this is only part of my story if you want to know moPsoriatic arthritis in my spine my hands and fingers my left wrist my left collar bone which is badly eroded my left hip two types of psoriasis guttate and plaque which appears on my chest my torso my legs raynauds phenomenon in my hands I do struggle to stay warm I have scoliosis on my spine which basically my spine does not run in is correct shape thus causing a left lumbar muscle imbalance which causes untold lower back pain I have Chiari malformation type1 and syrinxes one at C2 then one at C6/C7 which goes all the way down my thoracic spine to the top of my lumbar spine at C6/C7 I have a bilateral herniated disc which is pressing down on a nerve that runs through my (left hand side ) through my upper back through my left shoulder blade over my left shoulder down my arm all the way down to my fingertips because its bilateral even if use my right arm it can send the most breathtaking horrific stabbing burning nerve pain all the way from my neck to my fingers if the muscles in my neck tighten then releases nerve pain that is like a lightning bolt of nerve pain that shoots through the side of my left neck through the side of left skull behind my left ear through my left temple and behind my left eye I once had 17 of these in one day the first nearly through me off my feet I take meds for the pain but they sometimes work other times they don't nerve can not be totally brought under control I also get nerve just under my skin as the dermatomes get aggravated this is a horrible burning stinging pain where I can't bear to even touch my skin I have cubital tunnel syndrome on my left arm I had a fall from 11feet in May fracturing T12 and my Sacrum I recovered from this only to have someone slam into the back of our car not our fault they claimed liability next day the muscles in my whole back slammed tighter than safe which has increased all of my preexisting conditions and fractured vertebrae this has weakened my hip muscles from the top of my hip bone through my buttocks then September my breathing became laboured so only shallow breaths doing anything even slightly physical was enough to have me gasping for breath I left it which is not normally me as I am proactive about my health middle of November I decided to go and seek medical advice from my doctor who ran blood tests then more blood tests then more blood tests I kid you not my blood pressure was taken which was high in the 180 over 111 mark whilst awaiting my results I decided to have a shower which was tiring enough getting dried wore me out totally I came downstairs just in my underwear to sit on my settee to get my breath back just as I did there was a knock at the door which I answered it was our window cleaner wanting his money which was upstair

So my neurologist can’t be sure that my chairi malformation isn’t the cause of my weakness down one side of my body (awaiting tests) and he strongly suspects FND. I’ve accepted I’ll have another diagnosis soon but having a really hard time not being able to do most things daily. For days I can’t even function what’s your go too? Can’t seem to concentrate on anything just feel numb #FND #MentalHealth #ChiariMalformation

Hi, my name is Chellesblessed. I've been diagnosed with Chiari Malformation and have had the decompression surgery, at 55 years of age. I still have pain and numbness and tingling on the right side of my body, It's like I'm split down the middle, left side normal right side in continuous pain.

#MightyTogether

I’ve been experiencing painful shocks in my left eye along with pain around my eye socket. Sometimes the pain travels to my cheek and mouth. The left side of my eye saggs, face goes numb and throbs with pain that can be felt in the bone. I keep reading about trigeminal neuralgia but don’t see anything about the eye shocks. Does anyone experience this? #TrigeminalNeuralgia #Fibromyalgia #ComplexRegionalPainSyndrome #ChiariMalformation