Living with EDS: Chiari and Tethered Cord

Hi everyone, I hope you are all well! This video is just a little bit about two common neurological co-morbidities of EDS, and how they may be related. Have you been diagnosed with a Chiari Malformation or Tethered Cord? Feel free to tell me your story in the comments below!
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[@muddysledge]

Such an informative video and so thoughtfully explained. Thumbs up for sure.

[@TheHondagirl2012]

I also have Chairi and Tethered chord (I just found out about the tethered chord yesterday after seeing a Chiari specialist in my area.) I had a lot on my scans that were missed by the team I was working with. I would love if you could do a video about how hard it can be to get a diagnosis when you have Chiari Malformation or Tethered Chord. I have been having symptoms since I was a child and just got answers at 28. It has been a life of being told I'm just too fat, stressed, or that I am simply making it up. Which is something I am finding out is common for those with these conditions. Love your video 💜

[@pickles3653]

Wow, you sound like you have had the same kind of confusing and exasperating medical journey as I have had. Since I was around 14, I started having symptoms just magically emerge out of nowhere. Like you, no one believed me and said I was fine, or that it was all in my head. Hehehe, actually, it was "all in my head", considering I have/had Chiari 1 Malformation. After 18 years of fruitless searching, getting the unexpected diagnosis was a breakthrough, as it linked all my unrelated symptoms together. However, I still have a long way to go before I am "normal". But I wanted to tell you that you are not alone in this. I think it's amazing just how many people are either misdiagnosed or ignored with this issue.

[@curtisbemis6640]

Love your videos can't wait to see more so informative and your just awesome and such a good public speaker

[@PatrickLohKamp]

I always love your videos, you are so cheerful and energetic while you speak it's infectious. Very sorry that you've got to deal with all of the medical issues you've been handed miss.

[@christinadoherty3212]

+Patrick LohKamp Thank you Patrick! :)

[@nomadnarcoleptic]

💪🏼💕🙌🏼 This was the first video I watched over two years ago!

[@andreakuczynski6074]

Your videos are great ,I was decompressed 12 years ago,and now having other issues,you explain alot ,thanks..

[@mysnellvilleblog]

You help me so much you have no idea.gentle hugs

[@ranchugoldfish3822]

Very professionally done I have been ill lately and have missed a month or so of videos I missed you and watching my other chronically ill friends on KZbin. Bless you. Thank you for caring about us enough to do these videos. Bill

[@christinadoherty3212]

+bill hundt Im sorry to hear that you weren’t well! I hope you are doing a bit better now ❤️

[@ranchugoldfish3822]

Christina Doherty I am doing better. I just realized this is an old video, when I watched it I thought it was new. Oh well i still enjoyed it. Thank you for responding, with you being a big movie star. Bill

[@themakeuptutor4409]

Such a great, informative video 👍

[@HeatherBryant22]

Just found you and subbed. I actually saw your surgery update video first and when you said brain surgery I knew you had Chiari too. I also have tethered cord and SBO. One day I will deal with those but I am still dealing with failed decompression surgery.

[@marlamays4046]

Thank you it explained so much so well.

[@DS-pj3hu]

Your outfit is sooo cute!! It's really futuristic looking lol! Great video, extremely informative, keep it up!

[@christinadoherty3212]

+Danielle Sanders Why thank you! 😊

[@chaos5749]

so very informative...i was diagnosed the end of 2014 with chiari decompressed Feb 2015 and bc of inaccurate testing had to get an emergency surgery for shunt placement in April of 2015 and was diagnosed with hydrocephalus....june of this year I found a new ns and I'd been having relapse and remitting issues with my walking and excruciating pain in my back...mri revealed I have a rare spine condition called a epidural lipoma and it's caused my spine to tether... also eds... and the list goes on unfortunately...but so glad to see Vids bc we need more awareness...keep up the good work

[@christinadoherty3212]

+Tashina Wilborn Im so sorry you had to go through all that. I am no stranger to brain/spinal issues, so I can definitely relate. It really is a horrible condition that invites so many other horrible conditions. I hope that you are doing a bit better now!

[@Holypikemanz]

Amazingly understandable...most websites with info are all over the place. I am trying to get checked out for occult tethered spine cord syndrome

[@raymondsantos3678]

Hi Christina!! I have Chiari 1 Malformation and actually just got decompression surgery a week ago today with the amazing Dr. Petra Klinge. I’m still having soreness but none of my other Chiari symptoms. My ears will pop ALL DAY LONG because there was so much pressure. I couldn’t put my shoes on, laugh, sneeze, cough, nothing without having a big headache. I’m looking forward for the swelling to go down and finish up physical therapy to feel the full effects of the surgery! Thank you so much for your video! I loved it!

[@suehull7210]

Raymond Santos I am having tethered cord surgery with dr. Klinge in July. How was your recovery

[@shawnperez5401]

Thank you so much for this.

[@flatlanderminecraft859]

I have EDS, Chiari, and Tethered cord. This was very helpful, thank you!

[@Holypikemanz]

did you get treatment, if so, what did you have done?

[@vanvanvonvoyage6484]

Good video..im a trauma patient with these issues and.more..bless you..

[@diana-nd5pq]

What about a work up for a CSF leak? Very common in EDS patients..and I've seen many people who have had decompression surgeries that were unsuccessful because they were actually leaking spinal fluid the entire time.

[@ocrun6765]

I'm so sorry to hear you are suffering from this. I suspect I may have this as well but can not get doctors to even consider looking in to it.

[@KellyBtech]

Very good info! I wish you would have typed your most crucial recommendations out so we could copy and paste them into the search bar. It would've made it so much easier as I don't know how to spell the conditions you spoke.

[@whosindee]

I was decompressed a year ago and had a huge syrinx (which is thankfully gone now) but have a lot of nerve damage from it. I'm having a good time learning from your videos, it's nice to feel like I'm not alone!

[@christinadoherty3212]

+Slicksville Radio Im glad to hear that! You are definitely not alone! Im sorry that you had to go through that and are still dealing with the consequences 💜

[@w6467]

I have re-tethering of my spinal cord and it's inoperable. Diagnosed five years ago. I had spina bifida oculta with a lipoma within the filum terminale. Became symptomatic initially after a bad motor vehicle accident. Now I have marked upper motor neuron symptoms that are disabling. Thank you for this video.

[@robertwilliams5618]

Any update?

[@annamae4775]

I just found your page, i have chiari too! I'm so excited to find a KZbinr who understands!

[@christinadoherty3212]

+anna haines Hey there! Welcome! Sorry to hear you are dealing with chiari 💜

[@Truerealism747]

​@@christinadoherty3212trying to get a upright MRI my chronic pain is upper body and pelvic pain

[@gooshiesarah]

You are adorable!

[@ttime575]

Hi Christina - really informative video!! I have heds & a syrinx has been seen at c6-c7 - do you have any experience of what the treatment for that is? Thank you so much

[@MrsMcClay]

Tethered cord and Chiari come within the Spina Bifida package, all forms.

[@allisonsadler719]

I have Arnold chiari to if had decompression 10 years ago

[@kaylabarnes313]

I have Spina Bifida, I have both of these.

[@BargainBeautyAmy]

I also have Chiari just subbed

[@buchsdrn]

There is other diagnosis of Spina Bifida other that Occulta that can cause tethered cord. I have Myelomeningocele and had tethered cord twice.

[@christinadoherty3212]

+Natalie Buchsdruecker I hope you are doing better these day! 💜

[@mysnellvilleblog]

Oh yes, I've heard of that.

[@allisonsadler719]

I to have spina bifida and myelomeningocele since birth

[@scarlitrosemusic7159]

I'm going thru all this it's terrible, thank you for this information it's very easy to understand, well explained. I need this, there's such limits here, and being in the dark is scary. Btw, that belt - is it being used as a brace, or just a belt, or both. If both, that's really cool ;) ! :P I looove that belt.

[@christinadoherty3212]

The best is just for show, its elastic in the back so its doesn't provide any sort of stability. But its great for covering up the bump from my G-tube :)

[@scarlitrosemusic7159]

Yes this is good. Put it to double purpose lol. I cover my soft collar with scarves, which looks shockingly good considering lol. I want that leather collar I posted on instagram so bad (minus the D-ring ok! :P) but it's 200 bucks and I'm not sure if it'd actually work. I'm probably dreaming...

[@masonandplants4465]

Hey there my daughter has just been diagnosed with Arnold chiari-malformation type 1 and a tethered cord she's only 2n half

[@kristinwallace6551]

Unfortunately urodynamic testing is not accurate for a lot of occult tethered cord patients even though they may have severe bladder issues.

[@wilneliaortega4584]

Can you please tell me if my son can be helped by physical therapy I’m afraid to send him , he’s in severe pain .his mri showed tethered cord syndrome and he’s going to have the Urodynamics testing he has the bladder retention and bowel incontinence

[@alannacarlson6715]

My little cousin had Chiari Malformation but they didn't realize what was going on until she started going blind during her volleyball games/practices. She had the surgery for it.

[@christinadoherty3212]

+Charlee Carlson Its totally scary! Im so glad you cousin was able to get answers and have the surgery. Hopefully she is doing well now!

[@alannacarlson6715]

That she is!

[@amjreptx1]

as a premature baby, i was dealt with complications. I have congenital heart disease, severe scoliosis, and my right arm did not completely develop. I received a tethered cord surgery as a baby and I have always suffered from back pain, but i believe that is mostly due to my posture. But, THERE IS THIS ONE PAIN that i receive at least once a year that is really difficult to explain. The pain is immediately right below my right glute (never on the left). I've been told it's my sciatic nerve, but I swear that the pain is completely different. The pain is only in one location does not travel down my leg, it makes it difficult for me to walk, it is a sharp pain that can last 1 or to 20 seconds, and it's random when the pain initiates (there's no pattern to it , like i have no control to that area). i notice i receive them if I am sitting or standing for long periods of time. I usually take muscle relaxer for the pain and that usually does the trick. but I am curious to discover the name of this situation. I feel like I am the only one experiencing this pain.

[@kpopfanforever7720]

tethered cord isn't just in spina bifida occulta though I have sb myelomeningocele and have it and also chiari too. just wanted to mention it lol anyways thank you for this! I had my chiari decompression in 2015 but I can't get my neurosurgeon to fix my tethered cord even though its known I have severe tethered cord

[@stormeing]

i leak CSF, have horrible pain and a deepening sacral dimple that hurts! i'm a zebra and feel like everything i read, i have. since hypochondriac is not my goal, any midwest resources for experts? the area i'm in is replete with opinions, but fully bankrupt in knowledge... including me! i was told silent death was what i am headed for. i'd like to interrupt that flow as best i can!

[@pickles3653]

Thank you for this video. I had a Chiari 1 Malformation, and about 2 months ago, I had the decompression surgery. I had a huge variety of symptoms. Disappointingly, only a few cleared up or lessened after surgery. But now, the ones that have stayed have gotten worse, and the ones that disappeared came back. So my neurosurgeon ordered another MRI of my brain to test for hydrocephalus, and one of my spinal cord to test for tethered cord. He did find I have a tethered cord. But somehow, he did not see a reoccurring Chiari nor hydrocephalus. My brain MRI was with me lying down. So are you saying Chiari zero happens when lying flat for an MRI, or are you saying that a Chiari zero is there regardless of the position one is in for the MRI? Should I ask my neurosurgeon to have the brain MRI redone to be a sitting up MRI to prevent Chiari zero? I know something is not right in my head, as I always feel this pressure, especially when I lie down, and my Chiari headaches have returned. Do you know if anyone has ever experienced popping and cracking sounds in the back of their head and neck after decompression surgery? I also wonder if I could have a CSF leak, because my nose is always running, and I seem to have constant post nasal drip. Indeed, I know this sounds completely unrelated. But I had this situation before surgery where my nose would run, and be made worse when lying down and eating. I would have to spend close to 8 hours straight blowing my nose after eating anything. After surgery, the amount of time it took to blow my nose was greatly reduced down to initially 20 minutes. However, it has been getting steadily worse, where now I have to blow my nose for 3-5 hours after eating. My neurosurgeon does not believe that this is a CSF leak through the nose and will not test me for it, because I don't have an accompanying splitting headache when sitting up. But I wonder if a person can have hydrocephalus and a CSF leak at the same time. Then, the leak would be releasing some of the pressure, so the headache wouldn't be that much. My doctor doesn't believe me with that thought either. I'm sorry, I am totally rambling. But I am just wondering if you or anyone else who reads this knows of anything like this being connected to Chiari, or even stranger, to tethered cord?

[@alyssacannon8281]

What is the torso brace you wearing in this video? Is it for your ribs? I have been trying to find one but my old physical therapist said a rib brace doesn't exist.

[@christinadoherty3212]

+Alyssa Cannon Its actually a belt I found second hand. It doesn't really do too too much in the way of bracing, but it does help a bit with my ribs. Im always trying to find fashion pieces that double as light bracing. I can recommend "Long line" bras and "bustier" style tops to try to better distribute the weight on the ribs. Corsets are also great but not as wearable.

[@michaellui74]

HI christina what causes chari ? thank great video👍👍👍

[@christinadoherty3212]

+Michael Lui Thats a difficult question. The common belief was that the back of the skull was too small for the brain forcing it downward, but I have heard a few doctors hypothesize that in EDS it may be because the connective tissue can't hold up the brain, or that a tethered cord pulled it downwards, or that maybe even the high pressure in the brain forced it down (although it can also be the reason for higher pressure). So basically I guess I don't have the perfect answer to that question

[@edeneverly2573]

Can you give some info on how in check to get an upright MRI diagnosis or else to rule out like specialist, hospital, how to get a Neuro specialist who will actually know, listen, be willing to do the test? Cuz I'm at a loss and frustrated. I even know people with Chiari who've had scans supine after for other things and thevradiologist never even said a word as if it didn't exist...but it does. Appreciate the help. Thanks!

[@christinadoherty3212]

Its a bit hard to understand the question, but I think you are asking how to find a Chiari/EDS specialist who can order and read an upright MRI. This is certainly a bit tricky. There really are only a few big specialists in all of this in the US (im not very sure about other countries) and there aren't many states with an upright MRI machine. In my case I had a Chiari decompression done by a regular neurosurgeon but was still having issues so my pain specialist referred me to my surgeon I see now. The two specialists I know of the most are in Maryland and New York (I go to Maryland), and often the patient will have to get their upright MRIs done while they are there to see their surgeon. I encourage you to check out some of the Chiari support groups on facebook, they are a lot more knowledgeable than I am and maybe you can find others in your area who can better help you. "Beyond the Measurement" is a really good one.

[@bonnierichards1666]

Spina Bifida has 3 forms and occult is the least severe. I have the most severe form of Spina Bifida L3-L4 which I also have the tethered spinal cord in the same spot

[@christinadoherty3212]

+Bonnie Richards Im sorry to hear that! I know that Spina Bifida is a very difficult condition. 💗 Do they ever release the tethering when it comes to true SB?

[@MrsMcClay]

@@christinadoherty3212 I was never released or decompressed. I have Spina Bifida.

[@KelsoWho]

Here goes my story, and I'm not sure if you'll read this or not. Okay, my name is Kelsey, I'm 21 now and born with Tethered cord syndrome. I unfortunately have a Tumor that came with it called a Lipoma (fatty tumor). I had surgery when I was an infant, and they disturbed the nerves on the left side of my body causeing me to have 4 surgeries on my foot/ankle due to tight tendons and deforming my own ankle, my eye sight going out on my left side, along with motor skills, and have to self cath every 2 hours (tmi). Doctors described me as an unknown case because something new is always coming about with me. They couldn't go any further with the surgery after they had caused nerve damage, so now I have to deal with it. Which is no biggie, I see no difference since I've lived with it forever! I still have a hard time walking, but after my surgery in 2016 (Ankle replacement), it's made walking possible, though I have lost close to 80% of the strength out of my leg, my current doctor says to continue horseback riding, which I can see a 2% difference, but 2% is 2%, I'll take it. I have only have pain in the base of my spine if I move too much, I'm now getting random pains at night or just at random times, which has been going on for a few months. Doctors have said to just see how everything is before going for testing. I've been tested too much in my life also, I feel like a science experiment now. Sadly, it has started to effect my leg on my right side. The 12 doctors I have gone to have said that surgery is not possible for me, because if they would've gone any further, the nerves were so close that I would have gone completely paralyzed. which is why I continue to do surgery on everything except for my spine only because of my passion for riding horses. I've been in hopes to meet someone who I can talk to about this kind of stuff or someone to at least relate to. I work and still do daily activities like everyone else, it just takes me a bit to catch up with everyone haha. But growing up with having a neurological issue has had its tough times, but it just means you have to take a different route than everyone. I know my chances now for getting the tumor removed is a risk for going paralyzed at 75%. But I'm still happy and try to live my life the best that I can. I would really like to find a doctor soon that works on people like myself. If anyone has been able to get their tumor removed and have ways to relieve pain from the tethered cord syndrome, please let me know! I'm open to anything other than going the route of having to take pain pills! thanks for reading, for whoever is reading this!

[@firsanamol348]

How are you now??pray to God.. May God cures your all pain and diseases..stay strong and happy

[@marinamadera4320]

Hi Christina, I’ve been having headaches for 2 and 1/2 months now. I wanted to ask you how do the Chiari 1 headaches feel like? I’m starting to think I might have it. Thanks in advance for your response.

[@christinadoherty3212]

+Marina Madera Well thats a hard question. The classic “Chiari headache” is usually at the back of the head/base of the skull and worsen with straining like using the bathroom and sneezing. But in my case, and im sure many others as well, I have always had many different types of headaches in many different areas from unrelated problems. So these types of headaches weren’t really my #1 presenting symptom before my chiari surgery.

[@marinamadera4320]

Christina Doherty I recently saw a neurologist. I told her my headaches are worse at night because they are at the base of my skull and that I hear water inside my head she said I’m loosing function on my right leg and only wanted to give me a nerve block but didn’t do any mri or ct scan. My headaches are horrible and affective every day. I also get dizzy and pain in my face with them. Thank you for your response. I think I’m going to push for an mri.

[@diana-nd5pq]

Marina Madera Sounds like a possible spinal fluid leak!

[@marbarnes7063]

I have chiari 1 malformation and syringomyelia. I'm trying to determine if I have tethered cord and am scheduled to have a couple more MRIs done. I have no idea what EDS is and you never touched base on what it stands for or what it is.....

[@christinadoherty3212]

+Mar Barnes I do have another video all about what EDS is. I believe its one of the first on my channel. But EDS stands for Ehlers Danlos Syndrome. Its a connective tissue disorder that affects the body's collagen and often is the root cause in cases of chiari, syringomyelia and tethered cord syndrome. Its definitely I would look into if you already know you have two and maybe the TC. Its always worth ruling out ❤️

[@marbarnes7063]

I do have SM and CM and go this week for an MRI to see if I have TC. Is there a test to rule out EDS?

[@andrewreddy7906]

My newborn who isn't even 24 hours old is suspected to have tethering. Red blotch at the bottom of her spinal cord. She had an ultrasound and its pointing to a tether. We are going to be doing an mri tomorrow. I'm terrified of what may happen to my little girl. They are saying there is a high success rate in surgery if caught early but there's not alot of personal accounts of the surgery being done on an infant on the internet... at least not that I'm finding

[@andrewreddy7906]

Most I'm finding is excruciating back pain from the surgery. Hopefully she wont be incontinent. She's moving her legs fine and pooping and peeing wonderful for a newborn.

[@andiethegreenqueen]

Great vid! I 100% think I have a chiari malformation... Do you have a certain doctor in MA that you went to/and, or like? I've been looking around, and haven't found anyone yet.

[@christinadoherty3212]

I unfortunately can't really recommend anyone in the area. I had my decompression done her in Boston before we knew I had EDS and I ended up with a lot of complications later from the way it was performed. I now travel for my care. Feel free to message me!

[@michaellui74]

HI Christina I meant what causes chari 0??

[@christinadoherty3212]

+Michael Lui In that case my answer is even less certain since I know considerably less about it (and I suppose its the same for doctors), but I assume the causes are very similar to my previous answer. There is also something called an odontoid bone that is attached to the top of the spine. If that is at a weird angle it can make things even more squished in there. I guess maybe anything weird in that area such as craniocervical instability, loose connective tissue, pressure issues, Small skull, etc could contribute at least partially to it. Chiari 0 is basically just a blockage in the spinal column. I wish I had better answers, im not a doctor so I only know what I have been told (which hasn't been a whole lot). ❤

[@chaelao.4321]

I worried about chiari

[@michaellui74]

HI Christina thanks for your help.. I have a story to share with you in the future. I had two surgeries. one was cyst that block my csf fluid and it went into my spinal cord. I am in San franisco. share with you soon the for your time.do you have an email??

[@christinadoherty3212]

+Michael Lui Sure thing, its in my video descriptions as well, but its [e-mail]