Feel This Pain: S2E6 Syringomyelia

[@eamsee657]

Thank you for making this video! It is so hard to articulate to friends and family what you are feeling when you have SM, especially when you are in a bad flare up. To my astonishment, I have received a lot of doubt and disbelief when describing the pain. I have even heard people speaking behind my back saying that I was a "drama queen" and claiming the symptoms I have for attention. I showed this video to some immediate family members and it helped them to realize that syringomyelia is not only real, but an every day, every minute, every second reality for those of us that have it.

[@KenMcKim]

I am so happy to hear the video was helpful in explaining your pain to your family; that is precisely the reason I make these videos, and it makes me smile when I hear they are useful. All my best to you. - Ken

[@kizrash1]

After 13 years suffering with CM/SM this is the first time I've heard some one describe the pain so perfectly. Thank you for a wonderful informative video. x

[@karthikvijayan3818]

Kez Ashton my mother is also suffering from the same. surely you must be taking painkillers. is there any severe side effects that you felt. What's the present condition of the syrinx

[@lesaholloway1254]

After you have this, NO amounts of pain killers will help. Why bother taking them...

[@eamsee657]

Lesa, because even a small reduction in pain is worth the long term cost/ side effects. This is just my personal opinion based on my own experience living with SM. Every one is different and every body is different, so each must find the best therapy suited for them and their particular symptoms.

[@leightaylor6801]

I'm a 74 yr old lady had surgery for Chiari 1 & have cervical syringomyelia in 1996. The only prescriptions I have found that take away my horrible severe pain is oxycodone 10 mg. + acetaminophen 325 mg & Cyclobenzaprine 10 mg. Taken together every 8 hours. I go to a pain clinic every month. Have a urine test to prove I'm not taking more oxycodone (opioid) than prescribed. I do still have nerve pain. And pain from scoliosis Which at my age is inoperable. I still walk with a walker. Don't give up and suffer your horrible pain. It took me some time searching, Asking pleading doctors to help me before I found one who would order the opioid I so desperately needed. Also I researched on the Internet found proof doctors WILL & HAVE ordered opioids for syringomyelia nerve pain. Also research organizations with our conditions for their experience so you don't feel so alone. Good luck my fellow Syrinx Buddies out there. Love to you all Leigh Taylor in Oklahoma ❤😊

[@traycemccray]

My mom, son and uncle had syringomyelia. Unless you lived it yiu can never understand the pain. However the speaker gave good descriptions.

[@DARTHxBRSTNITRX]

I was recently diagnosed with Syringomyelia, mild rotary scoliosis, Kyphosis, and bulging annulus. In my personal experience, I have bilateral, constant numbness in my arms, sudden onset numbness/pins and needles in my right leg, and a continuous aching pain that radiates from my jaw, down my trunk, and along my shoulders and scapula. I am currently working with a physical therapist to manage my tension, scoliosis, and kyphosis. In therapy we are using TENS and heat at the end of my sessions and we found that that helps significantly with managing my pain. While the pain doesn't fully subside, it does make it manageable. If you are suffering from Syringomyelia, I have also found that reducing the strain applied to your neck is vital to pain management. Until I meet with a neurologist I am on indefinite 5 lbs weight restrictions per physician's orders; no pulling, pushing, lifting anything greater than 5 lbs. While it's very inconveniencing, it's vital to ensure no further damage is caused. I hope you (general population) find my experience useful to your situation, however, please don't try to self diagnose. An MRI and a medical expert are the only definitive way to diagnosis Syringomyelia and the best course of treatment that meets your personal life and medical history. I'm not an expert yet but I will continue to work on my medical degree until I am lol.

[@CleanWayRecordsTM]

Thank you , Ken... This series is so important! Though you left out a few more creative pain descriptions I have often heard, this video gets succinctly and clearly to the horrid world we S patients live in. After 5 years suffering, I am reminded that it is amazing how we can have any normal function and could still talk nicely to people when our bodies are constantly screaming out with all types of nerve damage and pain. The constant "tripping out of our 2 main systems" is enough to make us loose our minds and everything around us.

[@gratefulsoup1988]

It's a shame i can only 'like' this once.-peace

[@gavinchapman4871]

my life was over few yrs ago i was normal now i have a syrinx in my neck and led my back and neck and left arm in chhonic pain and nearly completely weak. Im trying every day my hardest to survive, i will not be in a wheelchair

[@s0up.666]

You are not alone I have the same

[@cayennegeorge1906]

I swear the pain of syringomyelia is unbearable at times.

[@theangrytiredzebra]

Most of the time. How are you now?

[@mahalokoka]

I have never felt such pain in my life. I describe it as falling into a fire pit and not being able to pull your arm out, no matter how much you scream and cry. Sadly, brain surgery was unsucessful in removing my syrinx. The surgery was able to reduce the intense burning sensation and I am thankful for that. I am now living with the intense electrical pain that hits me in ever increasing pain spasms. I now lose control of my limbs as wave after wave of electricity burns through me. I never know when it will hit, but I do have triggers...emotions, noise, stress, and too much activity (basically living). I am going on year 6 of this disease and I am forever thankful when I have a good day. If you do suffer from this, find a good therapist to help you with the depression. I wish you the best on your journey.

[@KenMcKim]

I wish many pain free days for you ♥️

[@deboliver9406]

I am dealing with as well. Your description of the pain is right on point. Can’t wait to share this with family. Thank you

[@KenMcKim]

You’re welcome, I am glad the video is helpful for you 🥰

[@MomofaNosyManx]

Hit the nail on the head! Thanks very much now to share with the ones who done understand.

[@KenMcKim]

Thanks Lisa, so glad to hear that you liked the video.

[@nanallen1]

Oh, thank you for bringing up this topic. And the great neurosurgeon expert on syringomyelia, Dr. Bernard Williams, commented that unfortunately the only medications that helps this nerve pain are the opiates. I led a large Fibro support 13 years at local hospital. Most had not had any MRIs ( !!). But 3 people reported they had been diagnosed with syringomyelia. They were just passed on to a rheumatologist for treatment of their fibromyalgia - and the syringomyelia was ignored as if it was unimportant !!!!!!!!! Then there is myleomalacia - hard to diagnose small bubbles in the spinal cord. Same symptoms - unending misery. How many of these people also have high intracranial pressure- with or without classic Chiari? Or Tethered spinal cord? Scoliosis is a risk factor for all these tragic CNS conditions. And yes, they are all invisible.

[@sinfullyblondie]

Thank You and God Bless You for understanding this Disease Perfectly.

[@drummerdan86]

it's actually really challenging - when has to learn to become left-handed after 24 years of being right-handed [i was 30 in march], and no that does not make me ambidextrous - however it is causing extra pain thru posture problems- ive not researched syringo or chiari for a good long while as it's easy to get hooked on, however now, i am really in the thick of it as it is affecting my life in a huge way. there are not so many webpages for self-help or aftercare of these after-effects; therefore i am glad and grateful to have found your channel good sir

[@DrJackSKYWATCHER]

Thank you. Great description. I will share with my doctors and family I have had syringomyelia for 13 years and only in the last 6 months did the burning pain begin and make it unable to do much. Doctors here in west CO do not know enough about syringomyelia and want to blame my symptoms on my history of anxiety/depression...

[@nanallen1]

DrJack SKYWATCHER The anxiety and depression are also symptoms - too much intracranial pressure? Some great organizations -Conquer Chiari, Chiari and Syringomyelia Foundation. Big hugs. Is your atlas out of position? Or your sacrum? Makes these conditions worse.

[@pamkou]

Perfect explanation of my pain & symptoms. I was told i have syringohydromelia. All docs I have seen swear that there's no way I can be in the amount of pain I live in. Im 35 so they claim i am drug seeking

[@KenMcKim]

So glad you like the video, sorry to hear about your struggle to find compassionate care.

[@MissaLVT]

I have Syringomyelia as well and I'm 38. I was told the same thing as well. It's so unbelievably frustrating. I wish I could trade places, for 24hrs, with the idiots that say Syringomyelia isn't painful!

[@nanallen1]

MissaLVT so sorry to hear about the uninformed medical opinions. Do you know about Conquer Chiari? Chiari and Syringomyelia Foundation.? They may be able to help you get better care, or provide the research that documents the pain.

[@MissaLVT]

@@nanallen1 no, I haven't. I'll have to look into it. Thank you for the info! I don't have Chiari, thankfully. Does Conquer Chiari also about Syringomyelia?

[@nanallen1]

MissaLVT Yes, these groups cover Chiari, Syringomyelia, Tethered cord. The Chiari diagnosis seems tricky. I do not have a classic Chiari, but I have a small posterior fossa, steep angle of the tentorium, short clivus - all characteristic of Chiari patients. Had a CINE MRI with an expert neurosurgeon. It was very abnormal. Yes, have had many Chiari symptoms. Also, suspect myleomalacia. Big hugs. I am always amazed how little neurologists and doctors know about these conditions. The expert neurosurgeons are the best - great human beings.

[@martymorse2]

After 28 years with Syringomyelia I would not wish this on any human. I am a post 48 years T-12 incomplete Spinal Cord Injury. The symptoms started 20 years post injury. After five spinal surgeries I've thrown up the "white flag" of surrender. As a former elite coach at the Olympics and Paralympics you have no idea how the thought of surrender is for me. The pain in my right leg and torso is similar to the worst sun burn I encountered as a child working on our family farm or at the beach. As a farmer, athlete and coach I know pain. Tolerating pain is my business when coaching an endurance athlete and as a former marathoner. Imagine a sun burn burn with tremors that never stops. It has eaten away my resolve and at my anti-drug/pain meds stance when treating such a horrible health problem. My odometer is about to tick over to 70 years on this planet and I can no longer deal with this "monster" that is Syringmyelia.. All I can hope is that neurosurgery will progress and no other person will have to suffer this way, especially for those who are post traumatic SCI.

[@KenMcKim]

Thank you, for being so open 💔

[@JJDigitalartStudio]

Ken any condition that affects the main nerves in your spine or cord will cause the symptoms you listed. If you have a condition that involves all of your spine then those pains go from headaches to loss of control of bladder, stool, gas and even the use of your legs. It comes and goes. Unlike a paraplegic. If you are standing or walking, it feels as if your leg is being kicked with a pointy shoe. It buckles beneath you and of course you can fall. That falls therefore cause more problems. I am pretty much only on my bed where I can regulate the cushioning of my body and only can get around with a walker or wheelchair. My heart goes out to all the others who suffer endless pain. We pray for the Lord to take us because it is the only real relief from pain we will ever know.

[@KenMcKim]

Joyce Joseph True enough. My aunt has had a spinal cord injury for years as a result of a race-car accident and has been confined to a wheelchair ever since. I'm sorry to hear that you are going through this pain, I hope you continue to find the strength you need to tackle each new day. #GivePainAVoice #dontpunishpain

[@JJDigitalartStudio]

Thank you and God bless you Ken. You are good for my soul. JJ

[@IsleofJade]

I have Chari with 2 syrinx. in my c spine. My entire c spine is affected. This had to be the best description of syringomyelia. Thank you so much! It's taken me many years, and many more doctors to get a diagnosis. I wish more people knew about this disease and so many others!

[@pippysperson]

Thank you for making this. I have my own invisible illness (Ehlers-Danlos Syndrome), but my husband was diagnosed with this earlier this year. Even though I can't feel what he is feeling, this helps me understand and empathize.

[@KenMcKim]

+Lesley Bacon I am so glad the video helped you, that is exactly why I make them. I wish you and your husband many low-pain days. - Ken

[@cortson1]

Lesley Bacon I was diagnosed 5 years ago with SM and 4 years ago with EDS, the geneticist at Case western in Cleveland has seen these two commonly together and also sometimes along with CM. I feel for you and your husband as these illnesses are not ones I’d wish on anyone ever.

[@JoeVinson]

Great video! Thanks for making it. It covers most of the problems I have.

[@KenMcKim]

My pleasure Joe, I am glad you liked it. Have a Merry Christmas. :-)

[@JoeVinson]

Ken McKim you too. I am also noticing that most people who have syringomyelia have other symptoms /illnesses, too. I myself have several things wrong with my back, but this can affect every part of the body. As horrific as it is, it's amazing how it works. I wish there were more doctors who knew about it.

[@drummerdan86]

You're very knowledgable Ken - quite a few good keywords [that i think i may borrow =] for my next pain clinic appointment, i have chiari as well [type 1] - you have described the pain and symptoms very well!! my right hand is now completely numb. was diagnosed with the both in 2010, very shortly after had brain surgery, yes, they went in and found a brain =D

[@brt-jn7kg]

I'm a disabled Texas peace officer. I was run over on a traffic stop. I have trauma induced syringomyelia. It's a living hell!!!

[@KenMcKim]

I'm so sorry you are having to endure this pain.

[@badnewsbruner]

I have a Syrinx and it SUCKS!

[@TuggerAbbey]

I have this as well as Klippel-Feil Syndrome. Could you do a video on it?

[@KenMcKim]

Hi Yvonne, I'll see what I can do. :-)

[@rossanafuentes4312]

sometimes the pain is so strong that i cannot be touched, its hard to explain people why it hurts when they hug you :(

[@KenMcKim]

So sorry you are going through this. I wish you many low-pain days in your future.

[@gamebeenikki9502]

I wish people would be able to relate to this. THANK YOU for doing an awareness video we really need awareness this video was really great and will help me educate my family on what i am going through. My Syrinx is from my T2-T12 and is quite crippling.

[@KenMcKim]

I am so glad you like the video, and that you feel it will help explain things to your family. That's the whole reason I made these videos and it gladdens me that it might be useful to you.

[@delta911]

I love this idea of a cape pain...the cape don't fit lol... I thank you for your understanding though.

[@KenMcKim]

Hi Steve, thanks for watching and sharing the video. Glad you liked it. :-)

[@delta911]

I like how you try to understand. Docs ive seen just try and pawn me off with pain killers ...i respect you for looking into this and helping make it more aware...i wish you all the best in life... I will subscribe.

[@marthaburns5370]

I have 9 syrinexs one on brainstem 8 on spine and Doctors keep telling its not a painful condition 😢💔

[@KenMcKim]

So sorry Martha, that's awful. :(

[@marthaburns5370]

@@KenMcKim thank you for understanding that is just one of my 26 medical conditions I also have Chiari malformation chronic regional pain syndrome and fibromyalgia which all cause pain I am allergic to most medications I have a medical marijuana card for the State of Rhode Island so every time I have to go to the emergency room I get treated like a drug seeker and told it is all in my head because I also suffer from PTSD it's just not fair my wheelchair is falling apart and I need some home modifications but I could not even get a letter from the doctors to try to have a fundraiser because they said too many people fabricate reasons for fundraisers what chronic pain patients have to deal with is just not excusable

[@zarkoostojic9063]

@@marthaburns5370 How are you doing now?😢

[@gezbez8357]

Please help ... my son has this T5T9 he’s got constant pain in ribs and spine nothings helps he’s only 11 . How can I help him with pain neurosurgeon says he should not be in this much pain but he is and we are not getting any help with it . A week and half in hospital never helped either i feel so helpless .

[@lamplight1636]

My mom has it and shes in a lot of pain and it bothers me so much

[@phil7628]

Mom passed away from this disese back in 99 hopefully they will have a cure for this disese

[@KenMcKim]

So sorry for your loss. I can only hope we see cures for all of these illnesses eventually.

[@phil7628]

Hey Ken is there anything different there doing now my mom had things called shunts in her brain last year's of her life she was bed redin

[@KenMcKim]

Brand new "Feel This Pain" video is up! A cape of pain wrapped around your shoulders. With occasional bladder and bowel control issues for good measure. ‪#‎dontpunishpain‬ ‪#‎GivePainAVoice‬ ‪#‎syringomyelia‬ kzbin.info/www/bejne/rqOxhoJniMmKnrM…

[@daniel4God4ever]

Best way to describe my pain it feels like my entire body is one big aching rotting tooth and yes especially tightness and pain in the shoulders and arms …it’s a living f’n HELL this condition

[@KenMcKim]

💔

[@prospershambare7883]

The spasms in the legs are the worst I experience mine at night 😢

[@KenMcKim]

So sorry for your pain 🥺

[@grahamwood156]

I suffer from all of this and I’m at the point of giving up

[@KenMcKim]

I’m so sorry you’re going through this ☹️

[@TuggerAbbey]

Yet all my doctors say my syrinx does not cause pain.

[@lamplight1636]

Yeah there wrong my mom has it too and she has a lot of pain

[@charcdarling7452]

I have just done a consultation i am recommend to have a Shunt to help drain the fluid. Already affected badly , both my legs are weak and progressing my hands starting to felt numb and skin feeling tighten.I am told this procedure would only help me from getting worse than what I am already are. the operation could also get me paralyse from waist down .please can people help share their thoughts ideas would help me consider what to do.

[@josgood5412]

The pain and numbness after syringo-subarachnoid shunt surgery is worse than my original SM pain. Imagine having a bad sunburn on your leg and foot. Now imagine someone pouring scalding hot water down your leg and foot over your sunburn. Only the pouring of the hot water never stops. Now imagine a pinpoint stabbing pain somewhere in your leg or foot. The stabbing stays a while. Then another one in another spot sometimes at the same time. Imagine a pain level of 5-6 at your absolute best. 24/7. Imagine taking Lyrica and other expensive drugs, and all it does is allow you some normalcy instead of being laid up. Again. It doesn’t stop. It doesn’t take a break.

[@nanallen1]

Jamie Osgood Oh such a nightmare. I have not had any surgery - for just that reason - unpredictable results. I am diagnosed Tethered spinal cord. ( also small posterior fossa - Chiari O, abnormal CINE MRI flow study. If a neck or pelvis injury started your worse symptoms - do you think your atlas could be out of place? True for me - unstable there and in pelvis. Gentle cranial sacral sometimes helps. But the real expert is Jerry Hesch, doctorate of physical therapy - Colorado.

[@constanceconnelley2877]

Oh dear GOD!!! I am so sorry you suffer this way!!

[@rossanafuentes4312]

the pain sucks