Chiari Online Support Group

Hello i am new so bear with me

Hi,
I am a 57 year old Woman & Widow that has no Family and i am on Disability due to all my surgeries and live in Port Huron Michigan… i live in constant unbearable pain. and i want to give up cuz i can’t take it no more so can someone help me and be my advocate and my story made national news due to tragedy and i have PTSD but they made me choose between my nerve pills and pain pills…I have had multiple shunt surgeries for Pseudo Tumor Cerebri that went on for 15 years and 37 shunt revisions. Now I have Chiari Malformation, Pulmonary Hypertension, and my diaphragm is 75% paralyzed. My spine has about 5 or 6 diseases including severe DDD, disk bulging and protrusions, severe stenosis, spondylosis, scoliosis etc etc. I can’t get out of bed nor wash myself and I have no life left. The pain doctors are too afraid to write anything or they say anything over 3 Percocets is way to much and the opioids are all that works. I am not allowed injections of any kind because of the Chiari. Nor can I take Tylenol or Aspirin or Motrin or steroids due to liver and kidney failure. I live alone in Port Huron Michigan with no family, and do not know where to turn for help. I’m also in heart failure and just wondering how much my heart can take? when i go to the Doctors once or twice a month they look at me and say You look fine>> they just don’t know it took me 3 days to prepare to get ready to go by cleaning up and getting clothes together to wear and that wears me out for a week or more but i wished they could see how i am in my Hospital Bed they supplied cuz my head has to be at a 30 degree lift due to all the fluid on my brain and i am on oxygen at night cuz i stop breathing… i cry myself to sleep most nights begging God to bring me Home…This is not living, and the pain meds helped me at least cook for myself and shower myself and have a little Dignity but i have nothing left to live for!!! At this point I do just want to give up because the only thing I have to look forward to is more PAIN. Wished something would budge a little. DOES ANYONE HAVE ANY SUGGESTIONS…

My Medical Records…http://bittersweetloveonfubar.blogspot.com/2020/

@Debmol62 First let me say I am sorry for all you’ve been through and are continuing to go through. I wish I had answers for you but I can offer prayer—and that is a mighty thing!! I am praying for God to meet your needs as only He can! You May start by seeking assistance through the church community where you live. May God give you a peace that surpasses all understanding!

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@Debmol62 I’m so sorry for all you’ve been through & the pain you still endure. I can’t believe they made you choose nerve or pain meds. Are you able to get to a pain management doc that can actually help you? I need meds to function too & while I don’t say anything about it to anyone, I’m not ashamed to admit it. That’s what they’re made for.
I’ve had 3 surgeries on my c-spine with 2 of them being fusions & the pain is continuous. I began having neurological symptoms last year that progressed to a point I could no longer hide them. My type 1 Chiari was found on a second brain MRI I had last December. I don’t know which of my symptoms are caused by it, if any.
Right now, my life is simple & I don’t do much but I do what I can…mostly sit out in our backyard with the squirrels & birds! We have a young one that visits daily & I love him dearly! He came to us last April & he wasn’t weaned 100% yet so we helped raise him & now he lives in the trees with his tribe! He has helped ease my sadness & gives me joy! Are you in a position to sit out & soak in some nature? Maybe get a hammock or beach lounge if you need to lie down. I realize it’s cold most places now but we’ve been blessed here in GA with a break from it!
Whatever you do, please don’t give up or give in. I wish I could take some of your sadness away.

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Chronic is a a very difficult beast and can feel like you are living in a hole. If you are ever interested in any of the therapies I have posted about be sure to ask. Very complex situation. I hope that you have a good counsellor who can help you with filtering out life’s garbage.

Graded motor imagery
Anti-inflammatory diet
neurodynamic
motor control
Trigger point massage

Lots of challenging and effective stuff that quality pain control centers should be using. I am not familiar with the difficulties of the American medical system but hopefully you can seek out new options to introduce some healing change into your life.

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Hello,

I am so sorry that you are suffering. As someone replied earlier, it would be good to get in touch with your church community to have emotional, physical, and spiritual support.

Since you asked for some assistance/advice, I will tell you things that have helped me (in no particular order):

  1. It may be difficult for you to do this financially but if someone can help you, try to seek out a functional medicine doctor (these doctors have Western medical degrees but also have a background in natural treatment remedies. They look at an individual as a whole and look more in depth into what can cause inflammation in the body.

  2. Taking CBD oil without THC to help decrease pain and muscle spasm, anxiety, inflammation.

  3. Taking magnesium bisglycinate to help decrease muscle spasm and relax the body.

4.Taking high quality fish oil that works as a natural anti-inflammatory.

  1. Ginger and tumeric that act as natural anti-inflammatories.

6.Heat

  1. Getting into a pool to float and walk around for exercise and to improve circulation.

  2. Soaking in bath tub with epsom salt (which by the way has magnesium in it and your skin absorbs it to help relax body)

  3. Sauna for heat to relax muscles, increase circulation, and to sweat to release toxins from your body.

10.Massage

  1. Prayer and support of family/friends/church community

  2. PHYSICAL THERAPY to help strengthen the muscles support your spine, stretch muscles that are tight. And to learn self treatment ideas after you are discharged to take care of yourself. Some PT clinics offer aquatic therapy where you can learn to do exercises and use an underwater treadmill in a nice heated pool.

Hang Tough!
Just remember that God is always with you!

Sarah

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Awww Your post touched my Heart and You just made my Day :slight_smile: You are a Precious Woman and i am very sick right now but would Love to reply more cuz i have alot to say but i wished i could get out in nature omg i Love Nature and it is my drug… Talk soon ok. Big Hugs

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Aww Thank You so much and i know God is my rock and i need to lean on him more and wished i had a Church and a Religious Community it is my Dream to have that again in my life and without it i feel i don’t have a Life :frowning: Talk soon as i am real sick and thinking about going into Henry Ford Hospital cuz they wanted to admit me Permanently 6 months ago for 24 hour care :frowning: at the time it scared me but to live alone where i am scares me more. Big Hugs.

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Thank You Sweetheart and no i don’t have a counselor yet but i am going to Henry Ford Hospital to get some help cuz these little town Doctors told me they can’t handle my Health Problems that there way out of there scope and i have way to many :frowning:

Thank You and God is with me and i need to reach out to him more then i do and i appreciate all the info i really do.

@Debmol62 I hope you’re in good spirits today & can feel the love surrounding you. Your post touched my heart & I hope to stay in touch with you. Respond as you are able at your pace with no pressure from me at all. Sometimes I don’t check in for several days.
Today, I’m seeing a neuro opthamologist finally about my double vision & worsening vision. I’m nervous! I’m hopeful he can help me so that I can get back to work! I know there is a chance that the recent changes are permanent. For now, I’m reminding myself to breathe. I hope your day is amazingly beautiful!

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Aww Your such a Beautiful Person and i do want to stay in contact with You so please private message me and I’ll give you my email (edited by modsupport Sharon) :smiley: and i Pray it’s not Permanent. i have lost so much of my eyesight by not going to that Specialist so Please stay on top that. they are direct admitting me Tuesday and i am pretty scared cuz i have no veins left from all the previous surgeries but i know this is what i need to save my life. Big Hugs Beautiful MichelleP :kissing_heart: :kissing_heart:

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You may want to consider removing your email address and name from this public post and contact the person directly and privately.

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@sarcar beautifully and wonderfully said! 100% agree with all your suggestions :purple_heart:
@Debmol62 praying that you have found some help and support locally! Glad to see all the support you have found here! May God bless you both abundantly!
Kindest Regards, Angel

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why? i am writing my own book and i am very much a open book so i have no reason to hide now but Thanks for the safety advice.

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no not yet Beautiful Lady but working on it with everything in me cuz i do not want to give up or better said i won’t let myself give up even though i want to. Thank You for all Your support. :revolving_hearts:

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@Debmol62 Good morning! How are you? I haven’t checked in for a bit since my vision isn’t improving. Are you still in the hospital or safe at home now? Please let me know when you can! My Neuro Opthamologist believes I have Myasthenia Gravis & started me on Mestinon last month. It helps tremendously but only lasts about 3-4 hours. I’ll see him next week to follow up!

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I want to say first I CARE and I am sorry many days I have felt this why fight feeling. I am praying for you and always here to listen

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Awww i’m so sorry and i will be Praying for You. Just think YOU are a Awesome Person and i would Love to fill You in but i am hurting soo bad and i just got my scans and i am gonna try to upload them here in hopes someone could shine some Light but i can’t take much more of this Soul taking Pain.

Awww Thank You Nikki that means alot Sweetheart and i am trying to find a Doctor that can help me but most say they wont touch my back & Neck and my poor Head is gonna explode i am at the very end of my rope. PLEASE PRAY FOR ME.