Paul's Story - It Could Happen to Anyone 

How are you feeling Maria?

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

How are you doing?

Same, I m in uk , same condition

How you doing Adam?

How are you doing lately?

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

@@BlackSheepTraderDevelopment 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.

Did you have surgery

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

@@BobbyJonesCSF are you guys still educating people with Syringomyelia

??

How are you feeling?

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

How you feeling?

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.

@@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

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?

@@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?

@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.

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?

@@danq6127 How are you doing Dan?

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

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

@@BlackSheepTraderDevelopment 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.