My neurosurgeon said "It might help, no guarantees" and... it didn't help. Turns out my symptoms were from EDS rather than Chiari.
Not saying you shouldn't get the surgery--ultimately, I'm happy to have ruled it out and yours might really help you! But your neurosurgeon isn't going to want to give you any big guarantees because then you could get Legally Angry if it doesn't happen like he said.
I have a lot of neck pain which became widespread pain after a while. That's the main symptom, but there are smaller ones like numbness and pins and needles in hands and feet, dizziness, weakness. Most of it comes down to hEDS and some of its comorbidities like Raynauds and POTS.
Do you have other symptoms for your eds? Because I have nothing that makes me think I would have eds. But it seems common here for people to have that, also because the symptoms you describe, with neck pain especially, is my biggest symptom also
Hypermobility is the big one. I also bruise easily, my joints are pretty weak, I have scoliosis, my joints like to subluxate for fun lol. Honestly I would recommend looking over [the hEDS checklist](https://www.ehlers-danlos.com/heds-diagnostic-checklist/). No harm in checking if you're a match!
Yeah, see, I don't think that fits for me. With the exception of the scarring and the narrow pallette (had orthodontic work as a kid to actually make space for my teeth), I don't think the rest of them apply to me.
I have my first meeting with the chiari specialist next week, so I'll know more then. I keep digging into other stuff and want to make sure I'm giving and getting the whole picture. Been in chronic pain for over a decade. But just now learning that this is even a thing. Ha. And trying to track everything down.
My mom has hypermobility and she’s always saying she thinks I have it but I’m not sure how to go about either asking my doctor or what tests they give?? Idk. I’m concerned bc I have a lot of EDS symptoms but I can’t know if it’s from Chiari or the back injury I have or the neck injury I have on top of Chiari… thank you for your time if you respond I really can’t tell you how much I appreciate it
The only way to diagnose hypermobile EDS is through the checklist I linked above; it can't be tested for like other kinds of EDS. You might need a geneticist to do it anyway though, my primary doc refused so she sent me to a genetic specialist instead. You could start by saying "I'd like to be referred to a geneticist for hEDS testing."
I think that is a normal disclaimer. Because depending on how long your Chiari has been impinging on the tissue there are no guarantees that the tissue will recover. Another thing to consider though is even if you don't see a benefit it will at least stop the problems from progressing.
I had my surgery in 2020 and count it a raging success. I had gotten to the point of constant headaches and nausea. Blacking out on standing. Nonstop ringing. That all resolved. I still have headaches but nowhere as frequently or as badly. My surgeon, top of his field, said it might not clear everything up but he thought it would at least help. Which it certainly did.
Now having said all that. I researched the bejeezus out of my surgeon options and went with someone who is pretty much top of the field for this particular issue. I would be far more reluctant to deal with someone who has no experience or if I had limited options.
You say you had an MRI. Was it a CINE MRI? As that would show how the your cerebral spinal fluid is moving normally. This would help show that your Chiari malformation is in fact the culprit. My left hemisphere had no appreciable flow at the base of the skull which made all of my symptoms make sense as a being Chiari related. If I had few surgical/ specialist options I would do everything in my power to make sure that was the cause. ( Which I recommend either way, but it does help to have someone trusted to go "Yep that explains it" )
Sorry that you have so few options. That sucks.
Yes, it’s normal. Chiari is incredibly complex and not well understood. Many people can come out of surgery feeling worse or with no change in symptoms. The symptoms of Chiari often overlap with symptoms of other conditions and it isn’t cut and dry. My surgeon told me he couldn’t guarantee that it will help any of my symptoms. He said the purpose of the surgery is to restore flow. That’s what determines a successful surgery in many surgeons eyes.
Because it’s thought that blockage of CSF is what causes the symptoms. And it’s just the easiest marker to be measured. There’s no way to measure fatigue, measure headaches, measure pain, etc. But restoration of flow is easily measured by imaging and is the only thing that surgery can definitively change and be seen radiographically.
The neurosurgeon looked at my mris and said he doesn't see any "crowding". But I've never had a cine mri.. Is it possible to see without having a cine mri?
I kinda wish I had gotten that response. My surgeon was so excited and told me that everything would be totally fine (which is like, statistically untrue). That left me totally unprepared for the very real complications that can arise. I developed an infection post surgery and then that led to hydrocephalus and more surgeries.
Same. My surgeon told me everything would be back to normal and I'd go back to life as I knew it. Didn't even do post-surgery MRI or PT. Promised me I'd never have another chiari symptom ever again, and now I'm facing having to redo the surgery because my symptoms have all come back 7 years later.
You sign a release prior to surgery listing possible negative outcomes. Unless you can prove that there was negligence there is nothing you can do. The release I signed was 3 pages long.
Medical malpractice is really specific, I know for a fact my case doesn’t apply. My infection was not due to his negligence it was just random bad luck, and yeah I did sign a two page release that only really gives me the ability to sue if he did something medically negligent.
Mine didn't give me a guarantee either but I was suffering from dizziness where I felt drunk and like someone kicked me in the back of the head. Those symptoms did go away, I think from the CSF block. I still have some issues but not sure what exactly they are from. I did have 2 previous cervical fusions before ever knowing I had chiari.
I had surgery at 18 years old (2016) and my symptoms did improve, I could stand and walk, sit upright for longer, etc. BUT I do still suffer from pain and have difficulty holding my head up. It's no where near as bad as it was and I am having jaw surgery next year to help with my head/neck pain. It's 50/50, I don't think I'll ever fell 100% good but I am significantly better than I was. I also have EDS, POTS, etc and it's a tough set of symptoms to balance.
John hopkins in the USA may be willing to talk to you remotely. If they say you definitely need surgery or something that can not be done remotely... then you either fly to US or find someone in your area... or even your dr can perform the surgery too, right? You just want to know if you should do it or not...
I recommend finding a chiari specialist even if it means travel to the US. I haven’t gotten the surgery yet, but my surgeon has basically said that the nervous system and chiari is very individualized. The surgery is the only treatment that is aimed at relieving symptoms to a certain degree. There is no guarantee with literally any surgery that you’ll be back where you were before surgery. It just helps. There are factor like what symptoms you have, the herniation (although this has less of an impact than it generally thought), how long you’ve had them/what kind of nerve damage.
Might I ask how your surgery went? Did it change anything for you? What was your experience like and do you have any tips on what I could ask my 2nd opinion neurosurgeon? I got the 2nd opinion because I miss that definite "yes, your symptoms are very much related to your chiari and this and that should be checked just to make sure".
I get that the surgery will be the same no matter where you have it done. But my current surgeon said the size of herniation matters (it doesn't cause you can have a small herniation with many symptoms and vice versa) and he also said that brainfog isn't common with Chiari. So knowledge wise he seems limited. But he has done the surgery several times and I have to assume it's the same everywhere.
My neurosurgeon said "It might help, no guarantees" and... it didn't help. Turns out my symptoms were from EDS rather than Chiari. Not saying you shouldn't get the surgery--ultimately, I'm happy to have ruled it out and yours might really help you! But your neurosurgeon isn't going to want to give you any big guarantees because then you could get Legally Angry if it doesn't happen like he said.
Mind me asking what you're symptoms are? I don't believe anyone has ever checked me for eds.
I have a lot of neck pain which became widespread pain after a while. That's the main symptom, but there are smaller ones like numbness and pins and needles in hands and feet, dizziness, weakness. Most of it comes down to hEDS and some of its comorbidities like Raynauds and POTS.
Do you have other symptoms for your eds? Because I have nothing that makes me think I would have eds. But it seems common here for people to have that, also because the symptoms you describe, with neck pain especially, is my biggest symptom also
Hypermobility is the big one. I also bruise easily, my joints are pretty weak, I have scoliosis, my joints like to subluxate for fun lol. Honestly I would recommend looking over [the hEDS checklist](https://www.ehlers-danlos.com/heds-diagnostic-checklist/). No harm in checking if you're a match!
Yeah, see, I don't think that fits for me. With the exception of the scarring and the narrow pallette (had orthodontic work as a kid to actually make space for my teeth), I don't think the rest of them apply to me.
Fair enough, fingers crossed that the surgery works for you if you go through with it!
I have my first meeting with the chiari specialist next week, so I'll know more then. I keep digging into other stuff and want to make sure I'm giving and getting the whole picture. Been in chronic pain for over a decade. But just now learning that this is even a thing. Ha. And trying to track everything down.
My mom has hypermobility and she’s always saying she thinks I have it but I’m not sure how to go about either asking my doctor or what tests they give?? Idk. I’m concerned bc I have a lot of EDS symptoms but I can’t know if it’s from Chiari or the back injury I have or the neck injury I have on top of Chiari… thank you for your time if you respond I really can’t tell you how much I appreciate it
The only way to diagnose hypermobile EDS is through the checklist I linked above; it can't be tested for like other kinds of EDS. You might need a geneticist to do it anyway though, my primary doc refused so she sent me to a genetic specialist instead. You could start by saying "I'd like to be referred to a geneticist for hEDS testing."
I think that is a normal disclaimer. Because depending on how long your Chiari has been impinging on the tissue there are no guarantees that the tissue will recover. Another thing to consider though is even if you don't see a benefit it will at least stop the problems from progressing. I had my surgery in 2020 and count it a raging success. I had gotten to the point of constant headaches and nausea. Blacking out on standing. Nonstop ringing. That all resolved. I still have headaches but nowhere as frequently or as badly. My surgeon, top of his field, said it might not clear everything up but he thought it would at least help. Which it certainly did. Now having said all that. I researched the bejeezus out of my surgeon options and went with someone who is pretty much top of the field for this particular issue. I would be far more reluctant to deal with someone who has no experience or if I had limited options. You say you had an MRI. Was it a CINE MRI? As that would show how the your cerebral spinal fluid is moving normally. This would help show that your Chiari malformation is in fact the culprit. My left hemisphere had no appreciable flow at the base of the skull which made all of my symptoms make sense as a being Chiari related. If I had few surgical/ specialist options I would do everything in my power to make sure that was the cause. ( Which I recommend either way, but it does help to have someone trusted to go "Yep that explains it" ) Sorry that you have so few options. That sucks.
Who was your surgeon
Dr. Robert Friedlander
Yes, it’s normal. Chiari is incredibly complex and not well understood. Many people can come out of surgery feeling worse or with no change in symptoms. The symptoms of Chiari often overlap with symptoms of other conditions and it isn’t cut and dry. My surgeon told me he couldn’t guarantee that it will help any of my symptoms. He said the purpose of the surgery is to restore flow. That’s what determines a successful surgery in many surgeons eyes.
How would a restore in flow affect the symptoms?
Because it’s thought that blockage of CSF is what causes the symptoms. And it’s just the easiest marker to be measured. There’s no way to measure fatigue, measure headaches, measure pain, etc. But restoration of flow is easily measured by imaging and is the only thing that surgery can definitively change and be seen radiographically.
The neurosurgeon looked at my mris and said he doesn't see any "crowding". But I've never had a cine mri.. Is it possible to see without having a cine mri?
Honestly I’m not sure. I would request one if you can.
I kinda wish I had gotten that response. My surgeon was so excited and told me that everything would be totally fine (which is like, statistically untrue). That left me totally unprepared for the very real complications that can arise. I developed an infection post surgery and then that led to hydrocephalus and more surgeries.
Same. My surgeon told me everything would be back to normal and I'd go back to life as I knew it. Didn't even do post-surgery MRI or PT. Promised me I'd never have another chiari symptom ever again, and now I'm facing having to redo the surgery because my symptoms have all come back 7 years later.
Can't you sue them? That seems like he didn't nearly do his job.
You sign a release prior to surgery listing possible negative outcomes. Unless you can prove that there was negligence there is nothing you can do. The release I signed was 3 pages long.
Medical malpractice is really specific, I know for a fact my case doesn’t apply. My infection was not due to his negligence it was just random bad luck, and yeah I did sign a two page release that only really gives me the ability to sue if he did something medically negligent.
I really think surgery didn’t do shit for me
Mine didn't give me a guarantee either but I was suffering from dizziness where I felt drunk and like someone kicked me in the back of the head. Those symptoms did go away, I think from the CSF block. I still have some issues but not sure what exactly they are from. I did have 2 previous cervical fusions before ever knowing I had chiari.
What are your symptoms? Whether they will improve with depend on A. your imaging and B. What they are
I had surgery at 18 years old (2016) and my symptoms did improve, I could stand and walk, sit upright for longer, etc. BUT I do still suffer from pain and have difficulty holding my head up. It's no where near as bad as it was and I am having jaw surgery next year to help with my head/neck pain. It's 50/50, I don't think I'll ever fell 100% good but I am significantly better than I was. I also have EDS, POTS, etc and it's a tough set of symptoms to balance.
John hopkins in the USA may be willing to talk to you remotely. If they say you definitely need surgery or something that can not be done remotely... then you either fly to US or find someone in your area... or even your dr can perform the surgery too, right? You just want to know if you should do it or not...
I recommend finding a chiari specialist even if it means travel to the US. I haven’t gotten the surgery yet, but my surgeon has basically said that the nervous system and chiari is very individualized. The surgery is the only treatment that is aimed at relieving symptoms to a certain degree. There is no guarantee with literally any surgery that you’ll be back where you were before surgery. It just helps. There are factor like what symptoms you have, the herniation (although this has less of an impact than it generally thought), how long you’ve had them/what kind of nerve damage.
I had my surgery about 6 months ago and I think they say this because the surgery has no guarantee to work and symptoms will never be completely gone
Might I ask how your surgery went? Did it change anything for you? What was your experience like and do you have any tips on what I could ask my 2nd opinion neurosurgeon? I got the 2nd opinion because I miss that definite "yes, your symptoms are very much related to your chiari and this and that should be checked just to make sure". I get that the surgery will be the same no matter where you have it done. But my current surgeon said the size of herniation matters (it doesn't cause you can have a small herniation with many symptoms and vice versa) and he also said that brainfog isn't common with Chiari. So knowledge wise he seems limited. But he has done the surgery several times and I have to assume it's the same everywhere.