Sorry you have suffered so long; I hope you get help at Mayo Clinic. I have only consulted a neurosurgeon once about my chiari and I was a little disallusioned with his attention to it. I had already had an mri which revealed it, but the surgeon pointed out that it is a risky procedure & based on my pain level; he advised against it. I think he should have ordered further tests, because I am losing feeling in much of my body, I have a constant vibration in my head, can"t concentrate & just recently rescue squad had to take me to er, due to terrible pressure in my head, just from straining. It was a scarry thing to lose all control of myself for a couple of hours. Do any of these symptoms affect you?
Sorry you have suffered so long; I hope you get help at Mayo Clinic. I have only consulted a neurosurgeon once about my chiari and I was a little disallusioned with his attention to it. I had already had an mri which revealed it, but the surgeon pointed out that it is a risky procedure & based on my pain level; he advised against it. I think he should have ordered further tests, because I am losing feeling in much of my body, I have a constant vibration in my head, can"t concentrate & just recently rescue squad had to take me to er, due to terrible pressure in my head, just from straining. It was a scarry thing to lose all control of myself for a couple of hours. Do any of these symptoms affect you?
Sorry you have suffered so long; I hope you get help at Mayo Clinic. I have only consulted a neurosurgeon once about my chiari and I was a little disallusioned with his attention to it. I had already had an mri which revealed it, but the surgeon pointed out that it is a risky procedure & based on my pain level; he advised against it. I think he should have ordered further tests, because I am losing feeling in much of my body, I have a constant vibration in my head, can"t concentrate & just recently rescue squad had to take me to er, due to terrible pressure in my head, just from straining. It was a scarry thing to lose all control of myself for a couple of hours. Do any of these symptoms affect you?
I've never had any of those symptoms. It is a risky procedure and some surgeons won't do it the only reason why I have to is because I developed a syrinx otherwise I wouldn't need surgery and if your having symptoms like that I would get surgery because those symptoms can be permanite
I have been dx with chiari 1 about 2 months ago. (6mm herniation) I was told they didn't think all my sx's were from the chiari. severe dizziness for months numbing headaches for as long as i can remember. Tingling, like a pinched nerve in my neck. Had a MRI of my cervical spine and had nothing in a nerve just bulging disc and arthritis and mild scolosis showed in lumbar but they never seen the chiari on that MRI. Til a month later and had one of my brain. Then was told I have fibromylgia then had a EMG done and showed mild carpal tunnel. Everytime I go to the dr they want to look for some other cause for all my sx's. They don't want to even think that it is the chiari. My sx's are numerous. I had a 2nd MRI (cine) to check my spinal fluid. They said that my spinal fluid was flowing fine. I've done physical therapy it has helped with my dizziness. Dr said it is my decision if I want surgery, but after all he said could happen and I might end up in worse pain, I think I'll just live with my sx's. Any advise would be appreciated...
I hope things are better for you now. What test did you have to diagnos the syrinx? what symptoms were you experiencing? Have you had your surgery? I have lost most of my feeling in my fingertips; always burning them. Am having more fatigue too. The constant pulsating/vibrate in my head is still about my worst thing to deal with. Hopefully there are beter days ahead for us.
You can see my syrinx in the MRI my spinal cord looks like a balloon not really any symptoms just migraines I have a problem with twitching but the surgeon doesn't know if that's caused from it or not
I have been dx with chiari 1 about 2 months ago. (6mm herniation) I was told they didn't think all my sx's were from the chiari. severe dizziness for months numbing headaches for as long as i can remember. Tingling, like a pinched nerve in my neck. Had a MRI of my cervical spine and had nothing in a nerve just bulging disc and arthritis and mild scolosis showed in lumbar but they never seen the chiari on that MRI. Til a month later and had one of my brain. Then was told I have fibromylgia then had a EMG done and showed mild carpal tunnel. Everytime I go to the dr they want to look for some other cause for all my sx's. They don't want to even think that it is the chiari. My sx's are numerous. I had a 2nd MRI (cine) to check my spinal fluid. They said that my spinal fluid was flowing fine. I've done physical therapy it has helped with my dizziness. Dr said it is my decision if I want surgery, but after all he said could happen and I might end up in worse pain, I think I'll just live with my sx's. Any advise would be appreciated...
I have several of the symptoms you mentioned. 33 yr ago I had trauma to my head; from that time on I have had one symptom or other. I had never had a migrane till soon after that , it was less than a year till they diagnosed carpel tunnnel- did surgery to no avail, also tried steroid injections that didn't help. MRI shows cervical stenosis from several bulging disks and MRI of brainstem (just had in 2011) revealed 7mm chiari. I have many more symptoms & from reading about chiari, it seems most are related to the chiari. I'm , as you are, concerned about surgery. The risk of staph infection is a great concern. My drs. don't seem to know as much about chiari as I would have hoped.
I would like to know if any drs ever prescribe treating chiaris with a cervical collar. I saw something on tv once that indicated it might help. You mentioned the twitching; I have a lot of twitching in my right leg & sometimes other places throughout my body. I suspect it is nerve damage, but Idon"t know.
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I'm at the mayo clinic in Rochester right now for chiari it was an accidental find but ice suffered with migraines and neck/back pain my whole life
Sorry you have suffered so long; I hope you get help at Mayo Clinic. I have only consulted a neurosurgeon once about my chiari and I was a little disallusioned with his attention to it. I had already had an mri which revealed it, but the surgeon pointed out that it is a risky procedure & based on my pain level; he advised against it. I think he should have ordered further tests, because I am losing feeling in much of my body, I have a constant vibration in my head, can"t concentrate & just recently rescue squad had to take me to er, due to terrible pressure in my head, just from straining. It was a scarry thing to lose all control of myself for a couple of hours. Do any of these symptoms affect you?
Sorry you have suffered so long; I hope you get help at Mayo Clinic. I have only consulted a neurosurgeon once about my chiari and I was a little disallusioned with his attention to it. I had already had an mri which revealed it, but the surgeon pointed out that it is a risky procedure & based on my pain level; he advised against it. I think he should have ordered further tests, because I am losing feeling in much of my body, I have a constant vibration in my head, can"t concentrate & just recently rescue squad had to take me to er, due to terrible pressure in my head, just from straining. It was a scarry thing to lose all control of myself for a couple of hours. Do any of these symptoms affect you?
Sorry you have suffered so long; I hope you get help at Mayo Clinic. I have only consulted a neurosurgeon once about my chiari and I was a little disallusioned with his attention to it. I had already had an mri which revealed it, but the surgeon pointed out that it is a risky procedure & based on my pain level; he advised against it. I think he should have ordered further tests, because I am losing feeling in much of my body, I have a constant vibration in my head, can"t concentrate & just recently rescue squad had to take me to er, due to terrible pressure in my head, just from straining. It was a scarry thing to lose all control of myself for a couple of hours. Do any of these symptoms affect you?
I've never had any of those symptoms. It is a risky procedure and some surgeons won't do it the only reason why I have to is because I developed a syrinx otherwise I wouldn't need surgery and if your having symptoms like that I would get surgery because those symptoms can be permanite
I have been dx with chiari 1 about 2 months ago. (6mm herniation) I was told they didn't think all my sx's were from the chiari. severe dizziness for months numbing headaches for as long as i can remember. Tingling, like a pinched nerve in my neck. Had a MRI of my cervical spine and had nothing in a nerve just bulging disc and arthritis and mild scolosis showed in lumbar but they never seen the chiari on that MRI. Til a month later and had one of my brain. Then was told I have fibromylgia then had a EMG done and showed mild carpal tunnel. Everytime I go to the dr they want to look for some other cause for all my sx's. They don't want to even think that it is the chiari. My sx's are numerous. I had a 2nd MRI (cine) to check my spinal fluid. They said that my spinal fluid was flowing fine. I've done physical therapy it has helped with my dizziness. Dr said it is my decision if I want surgery, but after all he said could happen and I might end up in worse pain, I think I'll just live with my sx's. Any advise would be appreciated...
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1 ReactionI hope things are better for you now. What test did you have to diagnos the syrinx? what symptoms were you experiencing? Have you had your surgery? I have lost most of my feeling in my fingertips; always burning them. Am having more fatigue too. The constant pulsating/vibrate in my head is still about my worst thing to deal with. Hopefully there are beter days ahead for us.
You can see my syrinx in the MRI my spinal cord looks like a balloon not really any symptoms just migraines I have a problem with twitching but the surgeon doesn't know if that's caused from it or not
I have several of the symptoms you mentioned. 33 yr ago I had trauma to my head; from that time on I have had one symptom or other. I had never had a migrane till soon after that , it was less than a year till they diagnosed carpel tunnnel- did surgery to no avail, also tried steroid injections that didn't help. MRI shows cervical stenosis from several bulging disks and MRI of brainstem (just had in 2011) revealed 7mm chiari. I have many more symptoms & from reading about chiari, it seems most are related to the chiari. I'm , as you are, concerned about surgery. The risk of staph infection is a great concern. My drs. don't seem to know as much about chiari as I would have hoped.
I would like to know if any drs ever prescribe treating chiaris with a cervical collar. I saw something on tv once that indicated it might help. You mentioned the twitching; I have a lot of twitching in my right leg & sometimes other places throughout my body. I suspect it is nerve damage, but Idon"t know.