Chiari

I read Brianna’s story about when friends get tired of hearing about your chronic illness, and then a “friend “ texted me and asked how I’m feeling and I said “the same”… but this is
What I really wanted to say…

l have better days and then really bad days where I can’t do anything at all because the pain is so bad or the symptoms are in full force- it depends on the day.
It’s like one day I can pick my leg up instead of dragging it and then the next day I can’t. The pain is horrible and constant- the muscle spasms are constant and my neurologist is talking about a pump for the muscle relaxer medication.
I’m learning a lot about syringomyelia though and trying not to get depressed or discouraged but it’s really hard because it’s a very rare and Besides doctors appointments or being in the hospital I haven’t been out of the house since august 13. I literally can’t go anywhere because I can’t walk. My right leg doesn’t work-I have to drag it more or less. A friend of ours offered a wheelchair but dave hasn’t gone and picked it up.

I have a form for the Secretary of State to get a handicapped placard for parking but I have to find out how to get it. the police department here in WC doesn’t do them but —city—- does but i think i have to be a —-city—- resident. I don’t know how to get it.

Since it ls -SPORT- season everyone is busy doing that and with everything that happened to- husbands NAME- he’s not much help which i totally understand. He gets up at 3:30 in the morning every day. Then goes to SPORT practice right after work and comes home and eats dinner and goes to bed at 8:30. On Saturday they have practice and go over film and he and YOUNGEST SON get home at 12:30 then he takes DAUGHTER to the grocery stores and there’s a few hours but he has to do stuff around the house like the garden, yard etc. they do a zoom meeting on Sundays for SPORT too so literally he has no time and I understand. This is what life is always like due SPORT season but usually I’m included in it. I want to go to the games but can’t. It was such a big part of my life and now that’s gone too.

Someone literally told me if I imagine myself walking my brain will make it happen- Nobody understands or gets this. If I had a stroke or broken leg I think people would understand it better but because it’s so rare some doctors don’t even understand it. My primary care doctor said “but aren’t you glad it’s not MS?” Well of course but this is an awful thing in and of itself.

In addition to my degenerative disc disease (I have multiple herniated and bulging discs in my neck and lower back which is painful and causes sciatica in my legs) and I have multiple hemangiomas (blood vessel filled benign tumors on the spine) in my neck, thoracic and lumbar spine which can cause pain too- and now the Syrinx is located at C7 to T1, it’s 5mm wide (your spinal cord is around 6mm wide) so it’s blocking the normal flow of cerebral spinal fluid which is what is causing all the symptoms. (Pain, numbness and pins & needles that travels over my whole body: arms legs chest face back etc , the inability to use my right leg, incontinence and constipation, migraines, dizziness and vertigo,

There’s literally nothing they can do for the syrinx in my spinal cord other than treat the symptoms. It is interrupting the flow of cerebral spinal fluid and also putting pressure on my spinal cord from the inside out - and causing all of my symptoms. I may have had it since 2021 based on MRIs but it was much smaller and since recently it’s swelled and grown in size (see the MRI image) .

In some cases they can put a shunt in to drain the fluid but it literally fills right back up so they drain the spinal fluid into your body- but my team at HOSPITAL NAME said I’m not a candidate for that because of my degenerative disc disease and in some cases it doesn’t help or makes symptoms worse- it’s not a very successful thing either- sometimes they can do a “decompression “ surgery but they usually do it only for syringes that are really big - but they want to monitor it to be sure it doesn’t grow bigger since it has recently swelled and grown. Sometimes syrinxes have a rapid onset and growth period. They keep asking me if I’ve had a recent trauma like falling down stairs etc and the only thing that I can think of is just repetitive motion at work that one day with all the customers in a row but other than that … nothing has happened. They said that could have flared it up but I truly thought at the time it was my degenerative disc disease and associated symptoms.

I want to use my neurologist appointment in October as a second opinion- and I found a doctor in TOWN NAME that has experience with syringomyelia
but his wait list of 12-18 months out.

As for work- I have no idea if I qualify for social security, I haven’t filed yet for it but I’d rather make money other ways- and not depend on that- sooo…
I’ve been doing BUSINESS NAME because it’s all online and I am trying to keep it going because it’s the only way for me to make money. I’m also joining some brands to be an affiliate/ambassador trying to earn commission on sales (also since it’s online) in a nutshell , I’m trying to make the best out of a crappy situation. It’s just hard because one day I might feel ok like I can manage the pain and the other symptoms and the next day might be awful where all I can do is lay on the couch because of the pain or a migraine or can’t feel my arm or hands. Every day is different and I have no idea until I wake up what it’s going to be like.

I’m really sorry to dump all that on you but I’m so not in a good place at all. I’m not saying it to be a “poor me” person but honestly my life sucks right now.
#Syrinx #Syringomyelia #chromic #PainManagement #Loneliness #Depression #cps #EhlersDanlosSyndrome #DegenerativeDiscDisease #DDD #spine #Chiari #ArnoldChiariMalformation #myelin

Hi, my name is Mashlee28. I've been diagnosed with

#MightyTogether #Anxiety #Depression #BipolarDisorder #Lupus #Chiari

Hi, my name is Cricket58. I've been diagnosed with

#MightyTogether #Anxiety #Depression #PTSD #Fibromyalgia #WhiteMatterBrainDisorder #Chiari Malformation, #Lupus #Osteoarthritis , #chronic Fatigue Syndrome, #hashimoto , Ankylosing Spondylitis and Degenerative Disc Disease.

#ChiariMalformation why does this cause leg pain !?

I started a group for Chiari Malformation sufferers. Join me! #ArnoldChiariMalformation #Chiari #ChiariMalformation Chiari Malformation

In 2019 I randomly started having hemiplegic migraine s and had them for 40 days straight-my neurologist dx me w HI after I end Ed Up in er and they did spinal tap and mri . The past week I started having major symptoms again and I wanted to ask him about Chiari. Here is how it usually go’s: neck stiffens, then eye zig zags swirls , phantom smell, left side face droop, aphasia, then the screaming pain behind my right eye. And it’s like a throbbing cymbal inside my head. Severe dizziness especially when eyes closed or walking, so falls happing. Nausea and vomiting. This time it slowly crept up, I thought I just pinched a nerve in my neck cuz I can hardly turn left, went to chyro and as soon as he adjusted I got a Sever headache and dizzy, then it’s just gotten worse ever since. I have all of the above symp except my eyes are just swollen and pulsing, and my head pain is less intense. Oh and severe neuropathy. Any one agree it’s JUST IH or could I possibly have chiari ? #IntercranialHypertension #ChiariMalformation #HemiplegicMigraine #spinaltap #neurologist

I’ve been dealing with undiagnosed issues for all my life but no one could ever figure out why I would pass out. For eleven years I had ever test except a ct and mri of my brain. Yesterday I went to the ER after passing out for the first time since being away at college. They did a CT and MRI, turns out I have Chairi Malformation.
As much as that’s great to finally know what’s wrong, it’s also horrible news. I was essentially told I need decompression surgery but my parents won’t pay for it until I get a second opinion.
I want surgery just for the slim chance of decreasing the severity of my symptoms but it’s also terrifying. There are so many things that could go wrong.
I’m also having to rethink so many things and I’m going to have to put my life on hold for surgery. I just started college, I don’t want to have to take a semester off. I may also never be a surgeon because I can barely stand for more than two minutes without passing out, I won’t make it as a surgeon.
I’m so scared of everything and I have zero support. No one in my life understands what I am going through physically and mentally.
#ArnoldChiariMalformation #ChiariMalformation #Chiari #chiari1

I had to learn the hard way about my family, they only wanted me around when they wanted something. Now they feared that one of them would get stuck with helping me out throughout all of this and bailed. Even my boyfriend who decided that since it's my fault I got sick that he would pursue other women who could satisfy his sex needs. (We're talking escorts) now it hurts when he pees and I laugh cause I haven't tough him in a year since I found out about his 2 side https://baes.ive had probably about 20 doctor visits this year that he has failed to take me to. I have no vehicle,I've already had a stroke and having seizures my family turned their backs on me, no friends because of him, he has already pulled a gun on me twice and threatened to run me over just last month. I've contacted police,homeless shelters,family. Nothing. I can't get the care I need. Does anyone know of a nonprofit (no homeless shelter) that someone who can barely take care of themselves with spine disorder and chiari but still live as independent as possible? I've asked united spinal assocation but they don't understand I don't have a working phone. This man does not take care of anything, he wants someone to give to him all the time. He doesn't fix anything that's why I'm living in a deathtrap. I wish y'all could see this hellhole I live in. I want out but I don't want to end up on the street. I'll never survive
#Chiari

Have you ever been on vacation where you got to just... step away from it all?

I fantasize about that, but not too much, because then I get emotional. I think it's good to have dreams, even if you don't know that you'll ever reach them. Something to strive for can be uplifting, and a great motivator in life. It's different though if you feel like it's truly impossible, and that is how I feel about my dream vacation.

The reason? My body would have to be there.

To be fair, I've had some lovely getaways. I've never been on a fancy cruise, or flown away to some exotic local for a pampered vacay, but we've been blessed by friends who gifted my husband and I some time away from the day to day responsibilities. We had a view of the mountains, and very little out of pocket expense. Our pets were cared for, we had nothing on the schedule, and it was lovely.

So what kept it from being the dream holiday? Pain, nausea, insomnia, medication schedules, subluxations, allergies, etc.

It is one of the most difficult realities of my existence. The concept that I can never get away. I get so very tired. Sometimes I feel like I am parenting my own body, but I don't get the rewards of actual parenthood. Just the late nights, disturbed sleep, constant learning, tears, and talking to pediatric Dr's (because often those are the ones dealing with my conditions).

Right now, my body is cranky, because it randomly decides to not digest anything properly, which is currently flaring, and that affects my ability to take my meds and/or absorb them properly, so I'm particularly hungry, sleepy, and my pain is especially high. I get tired of having to comfort myself with thoughts like "well, a lot of people with my comorbidities end up with a feeding tube, and at least I don't have to do that yet", while simultaneously thinking "that shouldn't have to be where the bar is set for what's 'good' with my body". Don't get me wrong. There is a lot of good in my life, just not the physical vessel I'm stuck in.

#ChronicIllness #Chiari #Syringomyelia #EDS #HypermobileEhlers-DanlosSyndrome(hEDS) #Dysautonomia #Zebra