Syringomyelia

Hi, my name is Donl.

#MightyTogether #Syringomyelia

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 wildflower2024.

#MightyTogether #Anxiety #Depression #ADHD #PTSD #Syringomyelia

Hello. I suffer with Syringomyelia. I used to hide the fact I have this disease, but recently I've decided I'm going to talk about it with anyone and everyone who will listen. Lets educate those that have never heard of Syringomyelia and Chiari. Lets get people thinking about the fact that just because you can't necessarily see this disease doesn't mean it doesn't exist and cause pain and suffering. Lets hold the health care entities accountable and insist they educate themselves fully by reading all of the research done regarding Syringomyelia and Chiari before they even consider disregarding the pain, trauma and suffering of these patients and their loved ones!

Hi,

I am Phillip and new here.

I am the care partner to my wife who was diagnosed in 2020 with Chari Malformation Type 1 with Syringomyelia (C2 - T11).

Decompression surgery was done in 2020 and laminectomy in 2022 for spinal shunt.

We have a host of professionals on the team - Neurologist, Nero Surgeon, Occupational Therapist, Physio Therapist, Speech Therapist, BioKinetics and Psychologists (Both for Me and Mrs)

We use both Pharmaceutical and Herbal drugs to address and manage the symptoms and there is nothing more clinically that can be done.

I joined the community with the hope that our experience on this journey may be of insight or help to others. Research into these conditions is ongoing and each patient is different. Having to deal with is condition in our 40's brings with it a whole host of physical, emotional and mental challenges.

Hi, my name is Jfugill_58. I'm here because my daughter was recently diagnosed with syringomyelia. I am looking for suggestions for shrinking the syrinx naturally. Suggestions for foods to eat/not eat etc. I am thankful that after all these years there is a known cause for her struggles.

#MightyTogether

Hi, my name is MollyASAP2024. I'm here because

#MightyTogether #ChiariMalformation #Syringomyelia #Hydrocephalus #EhlersDanlosSyndrome

Hi, my name is sprysalamander639. I'm here because I was diagnosed with Chiari Type 1 Malformation and Syringomyelia over a decade ago. I feel very isolated not knowing anyone else with the same conditions and issues

#MightyTogether

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

#MightyTogether #Anxiety #Depression #Migraine #AutismSpectrumDisorder #ADHD #PTSD #Grief #EhlersDanlosSyndrome #ChiariMalformation #TraumaticBrainInjury #Syringomyelia #PosturalOrthostaticTachycardiaSyndrome #HidradenitisSuppurativa #Meningitis #ADHD

Recently diagnosed with Chiari 1 malformation and Syringomyelia (so recent I’m struggling to pronounce them 😂) here to learn from others and try to understand what my future holds #Syringomyelia #ChiariMalformation