Paul's Story - It Could Happen to Anyone

[@awesomeastrid]

Thank you Paul for sharing your story.You have been a great inspiration to me.

[@FibonacciUser]

How are you feeling Maria?

[@AaronFabbri]

Thanks paul for doing this. You are the man.

[@collettebrynes1075]

Thank you Paul for sharing your experiences I was diagnosed with a meningioma tumor in my cerebellum area also found out on the 2nd brain scan they also found a Chiari malformation1 it’s all in the same area Drs did not discuss the Chairi that were scheduling my surgery to remove the brain tumor so I have sought a 2 nd opinion

[@PinkPanther70]

Thank you so much for an inspiring story. I know what you mean," getting numb to pain". I have a Tethered spinal cord and also have constant pain, but there is just so much more to life, that to sit and feel sorry for yourself. I love life and make the best of it.

[@FibonacciUser]

Thanks Paul 🙏🏼

[@magnetfishingweekender3259]

I've just been diagnosed with syrinx and everytime I hear about I could be paraplegic does scare me wish they rethink how serious this is in the uk

[@FibonacciUser]

How are you doing?

[@jashandadyal6953]

Same, I m in uk , same condition

[@EnjoySnus]

Most definitely a life changing condition. It's to bad ALL STATES DONT HAVE A SPECIALIST,and people are left to suffer.

[@grahamwood156]

Paul I have a story on like yours thank you mate

[@melanielehtonen7777]

You are a inspiration!

[@adamswider4614]

Thank you for your story. Just got diagnosed with Syringomyelia this year. I don't know what to do and seems like every doctor I spoke to don't know either.

[@FibonacciUser]

How you doing Adam?

[@jacquelinecasanova-ramos499]

I am 36 years old. I was diagnosed 3 years ago almost with syringomyelia. I have syrinxes in my cervical and therasic spine. I can't do anything the same anymore. It's very stressful and the pain and heavy weakness is horrible. Have to just learn to do everything different. Hard.

[@FibonacciUser]

How are you doing lately?

[@jacquelinecasanova-ramos499]

@@FibonacciUser worse. I now cannot work and only leave my house once or twice a month for doctors appointments. In horrible pain ans weakness.

[@jacquelinecasanova-ramos499]

@@FibonacciUser i am now having really bad right side pain all through my body. I still only leave once a month because if I do more I'm in horrible pain. My pain medication helps but only takes the edge off and only last for 4 hours. But its something.

[@candygirl9923]

Did you have surgery

[@maureenhartnett2953]

Ivermectin erases my bursitis pain that no other med touched. It might reduce the inflammation of syringomyelia too. I have a thoracic syrinx and about 25 other conditions over the past 30 years ;-(.

[@MissaLVT]

Thank you for this. I wish there was more information out there. I was diagnosed a few months ago. My Syrinx is located in T-8 through T-12. Plus I have Degenerative Disk Disease and arthritis in my back as well. Pain 24/7 is 100% correct. I also wish more doctors knew about this disease. None of mine had even heard of it and actually had to look it up.

[@BobbyJonesCSF]

I'm so sorry to hear about your diagnosis and that you're in constant pain... this is a terrible condition, but help is out there somewhere! If you need a second opinion or a medical consult, feel free to reach out to any of the members of our medical advisory board (SEA Board: csfinfo.org/about-us/scientific-education-advisory-board/ ). We try to educate as many medical professionals as possible about these issues through our Consider Chiari campaign. We just had a full-day seminar educating medical professionals last week. The videos from that should be up soon. Let me know if you ever have any questions! -Kaitlyn,CSF

[@FibonacciUser]

@@BobbyJonesCSF are you guys still educating people with Syringomyelia

[@FibonacciUser]

??

[@FibonacciUser]

How are you feeling?

[@MissaLVT]

@@FibonacciUserif you're talking to me, still the same. Always in pain.

[@grettagrids]

its pure HELL

[@kennethblindheim7319]

Thank you for the storie, im from Norway, no one here know about the syringomyelia, i got mine in C3-C5. it is 3 cm long, x 0,8cm x 1,1cm

[@FibonacciUser]

How you feeling?

[@JulieR73]

I had scoliosis surgery and have now been diagnosed with Chiari.

[@JayDee-du6gt]

Violent sneeze

[@homemagar3670]

Sir i have also this problem so what should I do doctor said no need to do opration so now i am taking medicine. Give me idea sir i am now 31 year old and some time i am scared also

[@nahord33]

I just got diagnosed in March 2020 and neurosurgeon said syringohydromyleia and that it was a small syrinx on T12 thoracic. I had been suffering from low back pain and sciatica April 2019 after my back gave out. Never healed fully and end of 2019 started having digestive and gastrointestinal issues with digestive and bowels functioning which is where the T12 stimulates with nerves. Been feeling awful for a year now and trying to find a specialist in my area. There is one but next State over so have to get insurance to see as an “emergency” because it is to me. I am scared too to have spinal surgery. I am suffering from pain and stiffness in legs and forearms with burning pins and needles even between first and second toes. Painful wearing shoes and walking or standing. My knees ache and can’t squat and stand without major pain. Anyway I hope you find specialist nearby.

[@homemagar3670]

@@nahord33 hello how are you doing now i am also suffering from march did you do opration and how old are you? Doctor told me this opration is danger and no need to do opration and this opration is not sure but i am feeling very hard standing problem walking problem and my body is weak also my shoulders muscles is hard so give me idea after surgery how long it will take time for normal life and after surgery will be our body pyaralise or not

[@nahord33]

Hello hm, I am ok today thanks. I am 54. No surgery yet but trying to get to a specialist first. Got obstacles to get there with insurance because out-of-state. Do you have syrinx from Chiari malformation? I asked if I had but was told no so still unclear how I got. Where is your syrinx on spine? Cervical?

[@homemagar3670]

@@nahord33 i have only Syrinx problem i have in cervical so you have also syrinx problem and from how long you have this disease with you?

[@nahord33]

@home magar I have syrinx in thoracic T12 and found on mri in March 2020. I want to get another mri to see if has grown in size because I can feel increasing pressure and aching. I am having trouble adjusting from an active lifestyle to debilitating pain and stiffness. Past month the pain level went up a notch or two and constant. Just feels better lying down.

[@danq6127]

Is fisical therapy any good for this? One doctor recomended me fisical therapy and another told me I shouldnt even be streching.

[@deniserowley3329]

It is certain he was born with chiari 1

[@vex2706]

Your chiari is not causing problems, the surgery is elective and I don't think you need surgery. That's what I keep getting told but I have zero quality of life so I'm considering ending my life. No pain medication, no relief. I'm sorry I have to say this but it's the truth.

[@danq6127]

Hi, I just got diagnosed with this although it´s been five years since I fist started having symptoms. But for me this is just the newest health problem that has no resolve, i´ve piled up diagnoses that have no cure since I was a child, I am 35 right now. Don´t do it, I know it´s difficult for you to see it right now but if you persevere you will definitely find quality in your life. You never know when but sooner or later they will find a cure for this, and if not a cure, something to relieve the symptoms has got to be out there. You will also find hapyness when you manage to find something you can get out of this. It may sound imposible but in my experience something good always comes out of something bad, no matter how hard it is to see it in the begining. How long have you been suffering from this? How old are you?

[@FibonacciUser]

@@danq6127 How are you doing Dan?

[@danq6127]

@@FibonacciUser much better now, thank you. How are you?

[@FibonacciUser]

@@danq6127 what have you done to feel better. I’m hanging in there but some days are harder than others

[@danq6127]

@@FibonacciUser avoid certain movements that always cause me pain, avoid any kind of effort, some exercise to gain back muscles I lost and what I think most helped me was taking vitamin B12. Took me quite a lot of time to realize which movements and efforts were giving me trouble tho.