[lori del sol]

My main question: if your MRI finds you have a chiari malformation and no syrinx can one develop later on? And what new symptoms would arise?


My experience: I was diagnosed with having a 7mm Chiari but no syringomyelia three years ago after four years of terrible pain, strange symptoms and misdiagnosis. I was grateful to finally have an explanation. Tried many medications and had many steroid injections into my spine. Eventually I lost my job due to my having many doctor appointments and the side effects of all the medications and lost my health insurance. I have not seen a doctor in over two years. The pain has become severe to where I spend days in bed. I constantly feel as if I've just been hit in the back of the head, pain in my eyes, tingling in various areas of my scalp, face, ears and neck. I am having more trouble with my balance when walking. I choke on food and saliva no matter how careful I am. I have almost no sensitivity to heat in my fingers (I have burned myself and not even known it). Vision problems are getting worse. It's driving me a little crazy at this point. I am currently trying to save the money to get a new MRI, I can not get a neurologist, pain management or neurosurgeon to see me without having testing done within the past six months.

I am looking for info and people to talk to, without being able to do much I've spent too much time thinking about it all recently. I'm also afraid of spending my money on a doctor that isn't experienced in chiari, so if anyone knows of a great doctor in Texas preferably near Fort Worth please let me know

Thanks ahead of time for your response!

[razzle51]

dr. Richard Jackson is tops in Texas

[dtwaitmh]

Yes you can develop a syrinx that quick and if so that usually means surgery is not an option anymore it is a must unfortunately because if left to long it can do even more damage and possibly paralyze you etc. etc. Have you been checked for EDS (Ehlers Danlos Syndrome) which is seen a lot in combo with chiari? Also what about CCI (cranio-cervical instability) which is caused by EDS and you have to do a MRI preferably standing but can do one sitting just not as accurate. Also TC (tethered cord) and retroflexed odontoid bone? Please feel free to ask me anything. At Dallas Neurosurgical there is Dr. Jackson and Dr. Denning that a lot of people said they liked and had surgery with. Do you not qualify for Medicaid since you are not working? Also join the Facebook groups there are a lot of people on their that have been to doctors. I am in TX too and it took me 12.5 years to get diagnosed and I had to fly to NY to do that so I completely understand how frustrating and disheartening this is. Feel free to contact me anytime. I am also a member of the Yahoo groups but haven't been theirs in awhile just FB right now. Take care and don't hesitate to contact me.

Originally Posted by lori del sol

My main question: if your MRI finds you have a chiari malformation and no syrinx can one develop later on? And what new symptoms would arise?


My experience: I was diagnosed with having a 7mm Chiari but no syringomyelia three years ago after four years of terrible pain, strange symptoms and misdiagnosis. I was grateful to finally have an explanation. Tried many medications and had many steroid injections into my spine. Eventually I lost my job due to my having many doctor appointments and the side effects of all the medications and lost my health insurance. I have not seen a doctor in over two years. The pain has become severe to where I spend days in bed. I constantly feel as if I've just been hit in the back of the head, pain in my eyes, tingling in various areas of my scalp, face, ears and neck. I am having more trouble with my balance when walking. I choke on food and saliva no matter how careful I am. I have almost no sensitivity to heat in my fingers (I have burned myself and not even known it). Vision problems are getting worse. It's driving me a little crazy at this point. I am currently trying to save the money to get a new MRI, I can not get a neurologist, pain management or neurosurgeon to see me without having testing done within the past six months.

I am looking for info and people to talk to, without being able to do much I've spent too much time thinking about it all recently. I'm also afraid of spending my money on a doctor that isn't experienced in chiari, so if anyone knows of a great doctor in Texas preferably near Fort Worth please let me know

Thanks ahead of time for your response!

[llhoover]

Originally Posted by dtwaitmh

Yes you can develop a syrinx that quick and if so that usually means surgery is not an option anymore it is a must unfortunately because if left to long it can do even more damage and possibly paralyze you etc. etc. Have you been checked for EDS (Ehlers Danlos Syndrome) which is seen a lot in combo with chiari? Also what about CCI (cranio-cervical instability) which is caused by EDS and you have to do a MRI preferably standing but can do one sitting just not as accurate. Also TC (tethered cord) and retroflexed odontoid bone? Please feel free to ask me anything. At Dallas Neurosurgical there is Dr. Jackson and Dr. Denning that a lot of people said they liked and had surgery with. Do you not qualify for Medicaid since you are not working? Also join the Facebook groups there are a lot of people on their that have been to doctors. I am in TX too and it took me 12.5 years to get diagnosed and I had to fly to NY to do that so I completely understand how frustrating and disheartening this is. Feel free to contact me anytime. I am also a member of the Yahoo groups but haven't been theirs in awhile just FB right now. Take care and don't hesitate to contact me.

I have a question regarding your statement about being able to develop a syrinx after being told by a NS that you don't have one...I was dx in June with Chiari (11mm)...The NS that I went to in the area that I live said that the MRI's showed no sign of a syrinx and to not worry about it b/c I would never develop one...I point blank asked him if I could!!! This is why I want to see a specialist with Chiari Malformation b/c I don't think this NS knows what he is talking about...There are just not any in the SW Missouri area! But I will travel to get to one...He said alot of my symptons are caused from the Chiari but just blew off the others that I have read on different forums that so many people have just like myself...So I was just wondering if a specialist told you that you could develop it or where you found the info so I could research it! Thanks

[res5562965]

Originally Posted by lori del sol

My main question: if your MRI finds you have a chiari malformation and no syrinx can one develop later on? And what new symptoms would arise?


My experience: I was diagnosed with having a 7mm Chiari but no syringomyelia three years ago after four years of terrible pain, strange symptoms and misdiagnosis. I was grateful to finally have an explanation. Tried many medications and had many steroid injections into my spine. Eventually I lost my job due to my having many doctor appointments and the side effects of all the medications and lost my health insurance. I have not seen a doctor in over two years. The pain has become severe to where I spend days in bed. I constantly feel as if I've just been hit in the back of the head, pain in my eyes, tingling in various areas of my scalp, face, ears and neck. I am having more trouble with my balance when walking. I choke on food and saliva no matter how careful I am. I have almost no sensitivity to heat in my fingers (I have burned myself and not even known it). Vision problems are getting worse. It's driving me a little crazy at this point. I am currently trying to save the money to get a new MRI, I can not get a neurologist, pain management or neurosurgeon to see me without having testing done within the past six months.

I am looking for info and people to talk to, without being able to do much I've spent too much time thinking about it all recently. I'm also afraid of spending my money on a doctor that isn't experienced in chiari, so if anyone knows of a great doctor in Texas preferably near Fort Worth please let me know

Thanks ahead of time for your response!

Your symptons sound alot like Chiari I and Arnolds Chiari. That is what I have. The pain in your head, vision, and balance are the same issues I experienced. Arnolds Chiari is the build up of CSF (spinal fluid) in your head which causes pressure on the brain. Chiari was diagnosed by MRI and then the Arnolds Chiari was found by another MRI that studies the flow of CSF. I literally felt like my head was so full of pressure that it was going to blow up. If I sneezed, coughed, or gagged I would pass out from the pressure. I had a shunt put in immediately (11/2009) to relieve the pressure and then had Chiari Decompression surgery done 2/2010. Hope this helps you. (I am in the Atlanta, GA area)

[Elianne]

Don't wait any longer! Your nerves are getting compressed everyday, i had the same symptoms and went to decompression but the damage was already done and was left with rsd (permanent nerve damage) on my right upper side, can't feel cold or hot, always in burning pain although i'm grateful that in someway the damage stopped there, doctors take their time while this disease keeps consuming us, don't delay and get help. Lots of luck to u.