Syringomyelia

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New Member

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.

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I'm new here!

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

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I'm new here!

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

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Hi I’m new here!

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

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Areas of pain move? Anyone experience this w/SM?

I am newly diagnosed, although my symptoms have been around for a while. Some of what I have experienced I thought was just horrible long lastingFibromyalgia flares. For instance, right now it’s my left leg and my left hip and my left upper arm and shoulder. It seems that jazz a week or so ago It was all across my shoulders and my upper back and my right arm and shoulder.
And headaches for months but now- no. But a lot of lower back pain.
TIA!

#Syringomyelia

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I'm new here!

Hi, my name is Ozkmtnhoney. I'm here because I just got diagnosed with Sm- T3-T-11. Seems to be progressing quickly, still searching for experienced Dr, takes my insurance, reasonable distance…ETC!! Thanks to some of the conversation threads here I am understanding more about what I’m experiencing. <3 #Syringomyelia

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I'm new here!

Hi, my name is Amanda_42. I'm here because I have just recently been diagnosed with Chiari 1 Malformation/Syringomelia.

I am trying to learn a little about the conditions without going down a vicious rabbit hole. I have been struggling with focus and concentration for quite some time now and it's really affecting my job! I have not been able to be productive, both at work and at home. I am just curious, for others with these conditions, do you struggle with focus and concentration?

Thank you so much; I'm really happy to have found this group!
Much love and support,
Amanda

#MightyTogether #Anxiety #Depression #ChiariMalformation #Syringomyelia

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