Hello I had a Chiari decompression at the university of Illinois. I have Syringomyelia and my Syrinx is both extending the spinal cord and is very long as well going from C2 to T12. It’s been 2 months since my surgery. Supposedly Chiari decompression resolves Syrinxes 80% of the time according to information online, but I don’t seem to be getting any better I have a lot of pain, and have weakness in all my limbs. I also have a loss of appetite. Yesterday I went to the store and just walking around the store I started to feel worse and worse almost sickness feeling! Does anybody else experience this cause I can’t find any info on that. My pain has to be the worst though it’s mainly in my neck and middle spine. My question is should I still be feeling like this 2 months after surgery? Also if anyone has similar experiences with this disease let me know. I’m 26 and my symptoms only started in August of this year and I feel like this disease has ruined my life.
I’m interested in replies to your questions as well. My daughter was diagnosed in August and her symptoms have progressed quickly since around the same time. Her MRI showed no syrinx however one of her biggest pain complaints is pain in her neck and middle spinal area.
Hello I figured I’d respond since nobody else is. Chiari Malformation can cause a lot of problems by itself. Some people only have minor issues and no intervention is needed. You should probably have her see a neurosurgeon preferably one who has knowledge of Chiari and get his opinion on whether or not to get surgery. Depending on what he says always ask for a second opinion.
I’ve been dealing with this aspect of my life for some 10 years now, probably more as I look back. I went to 4 (FOUR) neurologists before one finally figured out the source of the problem (a side lesson in, “don’t give up on what you believe until you find the right care” BTW). I had my decompression surgery 7 years ago and I’m 51 now so I hope I can speak with some experience here. Don’t give up, medical treatments can make a very positive impact in your life! This surgery, unlike orthopedic or cardiovascular or many other procedures, can take a while to reveal its benefits, but you have to be positive. Did my procedure, in my specific case, completely resolve all of the problems? Hell no. I still deal daily with issues. But am I (we) better than so many others? Hell yes! I would recommend reading a book someone offered to me called “learned optimism” by Martin Selegman. Changed my entire outlook and life.No one said life would be easy but seriously, your attitude affects you condition in surprisingly positive ways! Hey, I’m a combat veteran so “welcome to the suck!” In other words, open your eyes and every single person will find someone better off and worse off - around them within eyesight. So, I know it’s not easy (by any means) but if you can step outside of yourself for a moment, consider the larger world around you, and compare the life you have with what could possibly be (including the lack thereof) I hope you can find solace in knowing that, regardless of your condition, there is hope and positivity. Find more zipper heads like us. Lean in on the situation, and community, and own it. Running from it is like running from that bolder in Indiana Jones…it’s gonna catch you eventually. Instead, turn around and face it head on because in the end - That bolder is you.
It has only been two months since surgery…I would like to say everything is going to be great and all issues will be resolved but it may not work out that way. I had the decompression surgery in 2011 and I still have issues. Most of the pain from my syrinx is in the left shoulder area. Sometimes it is not too bad and sometimes it kicks my butt. You have to live your life and find ways to deal with the pain. I wish you the best.
Jester, this journey is not easy. You have to advocate for yourself and don’t give up. Make sure you have a doctor who is listening to you. Change neurologists if you have to, Ask about the possibility of a CSF leak. You are still healing. I had my decompression 6 yrs ago with no syrinx and I certainly wasn’t 100 % when I went back to work at 8 weeks out.
I had my surgery at U of I as well, though 5 years ago. First of all, 2 months is not a long time. Give yourself more time. Did you have your follow up mri after the surgery? Did all look good and did the the syrinx look better? I still have pain but it is not like the pain before the surgery. Good luck and prayers to you.
Thank you for responding! We found a great neurosurgeon that has specific knowledge and practice with pediatric Chiari. So far we are having trouble getting the other hospitals to share their information so that a definitive plan can be made. Upon his initial exam, he said he was not sure if she is a good candidate for surgery however he is reserving his decision until he can review her images himself. The neurologist is only concerned with the headaches and her psych issues!! Her symptoms are worsening and the meds simply are not working. I’ve reached out to the surgeon again today and his office is again requesting her records however if she doesn’t have drastic improvement soon, he recommends that I bring her back to the Emergency Department and basically start over. She also fractured her wrist just getting out of bed this week and the upside is that the orthopedic doctor we saw confirmed my suspicions of EDS!!! Another long few weeks but we are not giving up.
Question, yesterday she said that she saw it raining inside her classroom! She knew it wasn’t really raining but it scared her enough to ask a friend to be sure. I am wondering if this could be a side effect of the amitripline. I already believe it is causing her severe sleep issues…trouble falling asleep and staying asleep— perhaps sleep deprivation?? Anyone ever experienced visual effects that are similar?
@myangelface I’ve recently found out I have Chiari & one of the symptoms that has caused me to push harder for answers were eye/vision issues. I’ve had poor vision my entire life, near & far sighted with astigmatism. This year, I began having visual disturbances from a gray haze over my entire visual field to prisms in one corner to double vision. I was diagnosed with convergence insufficiency in October & my optometrist believed it was caused by an autoimmune issue. I’m scheduled for a neuro opthamologist in February 2020 for more info on that. In the meantime, a brain MRI revealed my Chiari.
Can you take her in to get her eyes checked? I don’t know if my problem is my Chiari yet but I hope to find out. It wouldn’t hurt to get her eyes checked by an optometrist too. They can let you know if it’s her eyes or medications. Wishing you all the best.
We’ve been to several ophthalmologists including an optic oncologist because they also found a spot on one of her optic nerves. As far as visual acuity, she is 20/15 in both eyes and needs no corrective lenses at all. I’m thinking we need a second opinion on the original spot on her optic nerve. The optic oncologist said it was similar to a freckle and just needs to be monitored.
I’ve read EDS can go along with chiari and Syringomyelia. I have yet to be diagnosed with EDS but it’s something I want to bring up with my doctors. As for the visual issues I have double vision and blurry vision that fluctuates day by day my double vision is monocular and I was told that means it’s not neurological, but I’m not so sure since I only started experiencing it when my Syrinx started causing me problems, but as far as seeing rain I’ve never experienced that hopefully like you mentioned it’s just Med related, but definitely consult with a neuro-opthamalogist
Hi if you would let me know what your neuro ophthalmologist says I also started having visual problems like blurry and double vision just months before my Syringomyelia symptoms started. I asked multiple times about it to my neurosurgeon who said it wasn’t connected. Saw two ophthalmologists and a neuro ophthalmologist nobody could give me any answers. Also with your double vision is it in one eye? As in if you cover one of your eyes do you still see the double vision? I only ask because I was told it can only be brainstem related if you have the double vision with both eyes open at the same time, but I still have my double vision just looking out of my right eye.
Hello @Jester! I notice mine when I look to the right mainly & unfortunately, that’s the direction we read in. My neuro opthamology appointment is in February & I’ll be sure to post about it & I’ve made a note on my calendar to tag you in it! YouTube has lots of videos from one group of docs who mention vision changes with a Chiari. They talk about syringomyelia symptoms too. I haven’t yet had a spine MRI so I don’t know if I have one or not.
Has anyone been able to help you?
I saw many optometrists, an ophthalmologist and a neuro-ophthalmologists as well who had nothing to say other than my vision was great. I did not find it necessary to convince the neurosurgeon and neurologists that it was related to Chiari or not. I had vision problems regardless of what they thought and need help with it! I saw a vision therapist before I was diagnosed with Chiari but my vision continued to deteriorate and she discontinued treatment telling me that I needed further assessment.
Voila with the Chiari diagnosis! Following surgery, I waited a bit but my vision did not improve significantly on its own. No spontaneous healing for me! I returned to the vision therapist who worked with me for a year. We needed a break from each other and I worked on other things. After a year’s respite, I continued with vision therapy for another year. I am pleased with the condition of my eyes. They get “fatigued” when my brain gets tired but are otherwise great.
I do not know if vision therapy is helpful when your brain is still experiencing the Chiari compression on brain, nerves, and blood vessels. It was not for me. With my research, I found that vision is a very complicated function of the brain and it can go sideways if the brain is overly taxed. Systems are compromised around the brain and various functions can deteriorate. No doubt why Chiari can present with a variety of symptoms and deficits.
Vision therapists are not all created equally. If they follow a standard programme and you have to attend regularly for a fixed price, it is probably not suited for Chiari. Vision therapists with advanced training and special knowledge in dealing with concussion or PTSD would be better. The odds of finding someone “specializing” in Chiari is low!
Everyone starts with pencil push-ups and tracking. May as well check out Youtube and give it a whirl.
Thanks I appreciate you keeping me informed. My vision isn’t looking in a specific direction it’s more like I see a ghost image usually above what I’m looking at. Mine is only in my right eye as I don’t use my left since it was damaged in an accident. I’ve been told when it’s only in one eye it’s a problem with the eye itself. My last eye appointment mentioned dry eye as a possible cause, but I’ve been using eye drops constantly since without any change. My vision will also get really blurry sometimes usually from looking at my phone or screen for more that an hour. The vision issues are annoying. As for Syringomyelia it varies a lot, but since you have a chiari you should definitely have your spine checked. Having chiari doesn’t mean you’ll develop Syringomyelia. However Syringomyelia is an insidious disease meaning it can go unnoticed for years and suddenly you have severe symptoms. If you do have Syringomyelia you’ll probably have to get surgery for the chiari which is what I had to do. Unfortunately my Syrinx got extremely large before it started causing me symptoms which is when I got the mri revealing the Syrinx and chiari. I had the surgery in September. Some people’s Syrinx get better once their chiari is decompressed and some people don’t. I’m not sure what group I’ll fall into yet, but hopefully I get better. My symptoms are severe pain in my back, weakness in all 4 limbs and numbness throughout my body. So far I don’t have any paralysis, but I’ve noticed muscle wasting which might eventually lead to paralysis. It’s a scary disease that you definitely want to have an MRI done to check. I pray you don’t have it. Nobody deserves this disease.
Hi sorry for such a long delay in a response. I’m not doing particularly well. This pain is becoming unbearable some days. My pain clinic has me on 15mg morphine tablets and 10mg hydrocodone, but sometimes they don’t help, and I hate being dependent on opioids, but it’s all I can do for this pain. I wish there was more to be done for this disease.
I am sorry to hear that you are in such a low spot with high levels of pain. Do know that there are options available for people with Chiari who still experience pain post-surgery.
I, as well, did not find medications to be of much relief but struggled to find other solutions. Nay, I wanted a banishment of that pesky pain that made no sense yet was predictable as all heck. I ultimately used a combination of different, more advanced treatments available in the physical therapy wheelhouse. Not all physical therapists are up for the challenge of Chiari! Not even all pain clinics are equal.
Perhaps your pain clinic could assist you with starting on graded motor imagery exercises (left-right discrimination level to be more precise). If they have not heard of it or dismiss it (because they have not heard of it) someone still may be willing to learn with you. Or, seeking elsewhere may be a better solution. Languishing away on medications that do not help is no place to be! Good luck in making changes in your care so that you can be more the person that you want to be.
Please don’t apologise. I completely understand & haven’t been active myself this week. Trying to keep my vision from getting worse. I’m being tested for Myasthenia Gravis & waiting for the antibody results. I had some blocking antibodies back in November when 1st tested but my new neurologist wanted fresh labs which is fine with me. Please take care of yourself & don’t feel bad for taking something that is helping you to function. That’s what it’s there for.
Have you been prescribed Gabapentin yet? It’s a nerve drug I find it helps with my pain I take 600mg 3x daily I have Chiari and a Giant syrinx from c2 to t12 and the pain I experience on a daily basis is enough to make me cry, but the gabapentin reduced the pain quite a bit for me. I still have pain of course but it’s much better. Enough I can actually sleep at night.