Hello. Just diagnosed with chiari a few months ago so very happy to have found this site. Sorry if this is a repeat discussion but have not had much time yet to look around. I was hit from behind March 1 and was diagnosed with whiplash. After a month it went away only to come back with a vengance 3-4 months later. While the symptoms were all related to the car wreck, an MRI happened to find a large sphinx which lead me to a NS who diagnosed CM with an 18mm tonsil! His only recommendation was surgery. So i went to a second dr who confirmed the diagnosis, the length, and actually found a second smaller sphinx higher up. He is ok with waiting but encourages surgery "sooner than later".
I feel almost guilty but the symptoms are so mild i have a had time justifying it. Headaches only when i cough hard or sneeze (so this bout of bronchitis has not been fun). Numbness in the hands when i do very intense cardio. Pain/tightness in the neck only when i get stressed or lift too heavy weights.
Has anyone else with annoying but tolerable symptoms debated surgery? How long did you wait? Regrets? Is it really worth a third opinion? The 2nd dr was a chiari specialist not just a general NS.
I would not wait to have the syrnix fixed or at least a drained. I have what seems to be permanent loss of feeling in my left arm due to cord and nerve compression. Just had my first c-spine surgery about 6 weeks ago and nothing has seemed to change. They say the sooner the surgery the better the outcome.
I agree with pebbles, but just wanted to add surgery is best when it can be planned into your life, including recovery. Also, the younger you are, the better your healing capacity. So, why wait for it to cause more problems and become more urgent later in life.
Thanks to both of you. Geoff, you actually hit the key point why i asked...my work schedule would allow me to get the surgery this summer. My fear is that I don't do it in the summer, then have symptoms flare late summer. I absolutely cannot miss a month in the fall or winter so would then have to suffer until the next summer. And whether or not i have surgery strongly influences which health plan i chose with the new system.
I wouldn’t mess around with two syrinx in the spine. They will put pressure on the spinal cord and potentially cause numbness tingling and eventually paralysis (we were told this by a NS). The treatment is a PFD (posterior fossa decompression) which should restore CSF flow and in most cases decrease the size of the syrinx. Best of luck to you!
I agree completely with Joalexa. I had almost NO symptoms prior to surgery except some minor numbness in one foot and tingling in my fingers from time to time which we attributed to probably nerve compression from all the exercise and weight machines I was doing at the time. I only had an MRI when I suddenly had tingling behind my eyes and my doctor thought it prudent to see a neurologist who immediately suspected CM and a syrinx because of my reflexes. I had decompresion surgery immediately to stop the syrinx from doing any more damage. My NS was VERY concerned because I had a very large syrinx and he said it was very unusual for me to have so little symptoms with the syrinx and CM that I had. Had I waited I was at high risk for suddenly waking up with permanent paralysis in parts of my body that would only progress as the syrinx grew and would NOT be reversible with surgery. I only had occasional minor headaches before the surgery and could have easily put it off for many months but I am VERY glad I did not wait because a syrinx can cause a great deal of damage to your spinal cord. And, like in my case, it can do a lot of damage to your spinal cord and you won’t even be aware it is happening. You really need to get decompressed to get the spinal fluid flowing properly again and hopefully those two syrinx you have will drain on their own and you will be in good shape. Feel free to send me a private message if you have any questions.
Yes, agreed do wait because a syrinx will deteriorate your spine period. You can't leave the fluid there. You may feel fine now but down the line it will cause much worse symptoms. My son was born with a Chiari and syrinx and has to have a 3rd decompression surgery because the syrinx keeps coming back, this time on his C-spine and it's a lot. Again, you can't leave it there...
I also was diagnosed with CM and a very large syrnix 3 1/2 months after a whiplash. Just curious, is your one shoulder lower that the other and that corresponding leg shorter?
I do not have a difference in either shoulders or leg length. Is that something which your dr attributed to the CM?
Karen in Toledo said:
I also was diagnosed with CM and a very large syrnix 3 1/2 months after a whiplash. Just curious, is your one shoulder lower that the other and that corresponding leg shorter?
No, this was attributed to the whiplash. I had the decompression, another surgery for a leak and finally a shunt. Felt fine for about 4 months and then symptoms started coming back. I had a MRI and cine flow study and everything looked normal. Two years after accident I started with neurological problems in hands and feet. All issues went away when I was laying flat. I finally went to New York and had an upright MRI and flow study. It showed that while I upright that flow was restricted and the extension and flexion x-rays showed that my atlas was out of alignment. I went to see Dr. Scott Rosa in Rock Hill, New York. He did an orthongonal atlas adjustment and when I got up all my symptoms were gone. I went back to Melville, New York and had another MRI and flow study done. It showed that when I was in alignment that my CSF was now corrected. A sign of being out of alignment is the difference in shoulder and leg length. I was hoping that this may be true for you.
ccxcrunr said:
I do not have a difference in either shoulders or leg length. Is that something which your dr attributed to the CM?
Karen in Toledo said:
I also was diagnosed with CM and a very large syrnix 3 1/2 months after a whiplash. Just curious, is your one shoulder lower that the other and that corresponding leg shorter?
I did not see your name..but..I had few symptoms like you but they decided to multiply within a few months. I wish that I would have gotten the surgery but kept putting it off. A friend of mine already had it and he said it was the best thing he has ever done. With OBAMA's crappy healthcare changes, I lose my insurance and now I can not get the surgery as soon as I planned. But as soon as I can, I am getting it. I have the worst bouts of dizziness and vertigo. My co-workers think that I am faking it so I do not have to work. It is unbelievable how many people do not believe that this is a real illness and that it is very painful as well.
I have to show them pictures of what it looks like and I give them the website to look at..then they believe me. The only other problem that I have is the extra activities that I used to do, I can no longer do them as much..kind of frustrating if you know what I mean.
For those of you with visual symptoms I suggest strongly having your eye Dr do a full exam. I have double vision and it is partially corrected with prism lenses glasses. They can see if there is nerve and muscle damage due to pressure on the cranial nerves. They can also sometimes detect intra cranial pressure after it has occurred. My daughters exam revealed optic disc elevation at the sinus side which can indicate pressure. For myself they saw that the optic nerves were full and crowded but no paplioedema (swelling). This can be a pretty cheap way to see if you need a new brain MRI.
Thanks Jennifer. After reading these comments and talking to the few people that I've told, it seems like I would be making a big risk by waiting to get the surgery. I hope you are able to schedule yours this year as well. Sylvia
Hiating this thing said:
Hello!
I did not see your name..but..I had few symptoms like you but they decided to multiply within a few months. I wish that I would have gotten the surgery but kept putting it off. A friend of mine already had it and he said it was the best thing he has ever done. With OBAMA's crappy healthcare changes, I lose my insurance and now I can not get the surgery as soon as I planned. But as soon as I can, I am getting it. I have the worst bouts of dizziness and vertigo. My co-workers think that I am faking it so I do not have to work. It is unbelievable how many people do not believe that this is a real illness and that it is very painful as well.
I have to show them pictures of what it looks like and I give them the website to look at..then they believe me. The only other problem that I have is the extra activities that I used to do, I can no longer do them as much..kind of frustrating if you know what I mean.
I think you got the best answers possible, but I hope you noticed 1 thing said, but not emphasized!!! The 1st NS i saw wanted to do decompression surgery, & go in & drain the syrinx (it is very large, & actually is growing out a 2nd syrinx out & up, carving out a canal in my spine). Then I found this group & spoke to numerous other NSs...1 of whom was his mentor that he sent me to. Everyone INCLUDING this guys buddy agrees whole heartedly.......DO NOT ALLOW ANYONE TO GO INTO THE SPINAL CHORD & DRAIN THE SYRINX!!!!! it is extremely dangerous & NOT the proper way to treat the condition!!! Theoretically, once the decompression is done & the spinal fluid can flow again, the syrinx should clear itself!!! That is the way it is treated!! To drain the syrinx is "reckless" as the other NS's put it!! I asked the question.."what if the syrinx DOESN'T clear itself?"..& the right answer is.."you do not take such dangerous & extreme measures for an unlikely situation that has not yet happened. If on the odd chance it does not, then you go back & deal with it then"...But i would already be cautious with someone who thinks that is the correct & safe plan!!! Please explore this subject..& I agree..do not wait too long. It took 10 years to get my diagnosis..you do NOT want to end up like me!! trust me on that!!
Thank you for emphasizing that. Luckily my dr did not mention draining either one, rather said they would most likely go away once flow was resumed. But I will definitely make sure that he doesn't do it. As nervous as I am about the decompression surgery, as an athlete don't think i'd ever let someone go into my spine. Sylvia
jessica said:
I think you got the best answers possible, but I hope you noticed 1 thing said, but not emphasized!!! The 1st NS i saw wanted to do decompression surgery, & go in & drain the syrinx (it is very large, & actually is growing out a 2nd syrinx out & up, carving out a canal in my spine). Then I found this group & spoke to numerous other NSs...1 of whom was his mentor that he sent me to. Everyone INCLUDING this guys buddy agrees whole heartedly.......DO NOT ALLOW ANYONE TO GO INTO THE SPINAL CHORD & DRAIN THE SYRINX!!!!! it is extremely dangerous & NOT the proper way to treat the condition!!! Theoretically, once the decompression is done & the spinal fluid can flow again, the syrinx should clear itself!!! That is the way it is treated!! To drain the syrinx is "reckless" as the other NS's put it!! I asked the question.."what if the syrinx DOESN'T clear itself?"..& the right answer is.."you do not take such dangerous & extreme measures for an unlikely situation that has not yet happened. If on the odd chance it does not, then you go back & deal with it then"...But i would already be cautious with someone who thinks that is the correct & safe plan!!! Please explore this subject..& I agree..do not wait too long. It took 10 years to get my diagnosis..you do NOT want to end up like me!! trust me on that!!