Aa
new here, looking for advice
I was recently diagnosed with a cervical syrinx. The road to diagnoses was a long and some what complicated journey.
In 1998 I was diagnosed with peripheral neuropathy, this mostly affected my lower limbs with mussel twitching, a creeping sensation on the backs of my legs and numbness in my feet. My gp arranged for a consult with a neurologist and at the time my neurologist said it was due to alcohol abuse. I was a heavy drinker and continued to drink until 2002. After a spell in hospital and an addiction centre I have been sober a day at a time since then. During my initial recovery from the drink problem I suffered anxiety but this eventually passed. Every thing was ok until 2006 when I again started having episodes of mild anxiety. One Sunday afternoon in October of 06 I was napping on a chair at home, when I awoke the room was spinning. This continued all night so in the morning I went to my gp who said it was an ear infection. A week later I was still experiencing vertigo. My gp then put me on medication for Ménière's disease. Things settled down with the occasional episodes of vertigo. However, in 2006 I had a fainting episode whilst driving resulting in me crashing my car into a wall, I did not receive any injures and chose not to go to hospital. I continued to have these fainting episodes but said and did nothing as I felt my gp was starting to think I was a hypochondriac. In May of 2008 I fainted at home during a bout of coughing and was taken to my local hospital. I was admitted for tests under a cardiologist as my blood pressure was erratic on admission. All tests were ok from the point of view of the cardiologist however he noted some nerve degeneration and Nystagmus and arranged for an ENT consult. Since then I have suffered constant dizziness, occasional pain radiating from my neck up into the back of my head, fatigue, chronic severe pain in shoulders, rash on my hands, chest and shoulders with numbness and loss of sensation in my hands and across my shoulders. Mild occasional anxiety. Last November I noted a lump on the right side of my neck, an MRI was done witch showed a “cervical syrinx“. Doctor could not say from the scan what the mass on my neck was. I had a VNG test witch was also abnormal. I am waiting to see a neurologist and neurosurgeon. The ENT doctor is unable to tell me anything about this syrinx as he says it is outside of his field of expertise. I have been unable to work or drive for the past two years due to this illness.
I have looked at many web sites dedicated to this illness an find that there are so many contradictions about the whole syrinx thing some saying surgery is the answer others saying let it be and just monitor it is so confusing.
I do not know if the peripheral neutrality and the cervical syrinx are related and would like to know if a c syrinx would cause all the problems.
I must stress that any of the doctors I have dealt with to date have not mentioned Chiari Malformation but as there seems to be a link between Syringomyelia and Chiari I feel this is the best place for me to start.
Thank you in advance. Ray
In 1998 I was diagnosed with peripheral neuropathy, this mostly affected my lower limbs with mussel twitching, a creeping sensation on the backs of my legs and numbness in my feet. My gp arranged for a consult with a neurologist and at the time my neurologist said it was due to alcohol abuse. I was a heavy drinker and continued to drink until 2002. After a spell in hospital and an addiction centre I have been sober a day at a time since then. During my initial recovery from the drink problem I suffered anxiety but this eventually passed. Every thing was ok until 2006 when I again started having episodes of mild anxiety. One Sunday afternoon in October of 06 I was napping on a chair at home, when I awoke the room was spinning. This continued all night so in the morning I went to my gp who said it was an ear infection. A week later I was still experiencing vertigo. My gp then put me on medication for Ménière's disease. Things settled down with the occasional episodes of vertigo. However, in 2006 I had a fainting episode whilst driving resulting in me crashing my car into a wall, I did not receive any injures and chose not to go to hospital. I continued to have these fainting episodes but said and did nothing as I felt my gp was starting to think I was a hypochondriac. In May of 2008 I fainted at home during a bout of coughing and was taken to my local hospital. I was admitted for tests under a cardiologist as my blood pressure was erratic on admission. All tests were ok from the point of view of the cardiologist however he noted some nerve degeneration and Nystagmus and arranged for an ENT consult. Since then I have suffered constant dizziness, occasional pain radiating from my neck up into the back of my head, fatigue, chronic severe pain in shoulders, rash on my hands, chest and shoulders with numbness and loss of sensation in my hands and across my shoulders. Mild occasional anxiety. Last November I noted a lump on the right side of my neck, an MRI was done witch showed a “cervical syrinx“. Doctor could not say from the scan what the mass on my neck was. I had a VNG test witch was also abnormal. I am waiting to see a neurologist and neurosurgeon. The ENT doctor is unable to tell me anything about this syrinx as he says it is outside of his field of expertise. I have been unable to work or drive for the past two years due to this illness.
I have looked at many web sites dedicated to this illness an find that there are so many contradictions about the whole syrinx thing some saying surgery is the answer others saying let it be and just monitor it is so confusing.
I do not know if the peripheral neutrality and the cervical syrinx are related and would like to know if a c syrinx would cause all the problems.
I must stress that any of the doctors I have dealt with to date have not mentioned Chiari Malformation but as there seems to be a link between Syringomyelia and Chiari I feel this is the best place for me to start.
Thank you in advance. Ray
Thank you for your response selmaS.
I must thank AA and the wonderful people who supported me during my early days in sobriety.
I have been looking at many of the posts here and can identify with the pain and frustration that I see in the words I read. I am ignorant about the whole cm/sm issue and feel dumb and stupid when I try to talk to the doctors I am dealing with. this forum I hope will give me the knowledge and the support to make intelligent and informed decisions concerning my illness
Thanks again
I must thank AA and the wonderful people who supported me during my early days in sobriety.
I have been looking at many of the posts here and can identify with the pain and frustration that I see in the words I read. I am ignorant about the whole cm/sm issue and feel dumb and stupid when I try to talk to the doctors I am dealing with. this forum I hope will give me the knowledge and the support to make intelligent and informed decisions concerning my illness
Thanks again
COMMUNITY LEADER
Hi and welcome to the Chiari/Syringomyelia forum.
And Congratulations on ur sobriety!! Ray u r correct that chiari and syringomyelia are related although not eveyone with chiari has a syrinx and vice versa.
Since ur syrinx is cervical and there was no mention of chiari it is possible u do or did not have at the time of ur MRI a large herniation.U will need a brain MRI w/wo contrast to rule it out.
A syrinx can form after a trauma like the car crash u were involved in...some are congenital and r triggered by the trauma. A dr that specializes in the chiari area will be able to tell u which one u have.
ANd if ur syrinx is large it can affect ur extremities.....only the larger ones can be operated on,......they use a shunt or stint depending on size to help move the fluid out of the cavity......
Find the right dr is key.
"selma"
And Congratulations on ur sobriety!! Ray u r correct that chiari and syringomyelia are related although not eveyone with chiari has a syrinx and vice versa.
Since ur syrinx is cervical and there was no mention of chiari it is possible u do or did not have at the time of ur MRI a large herniation.U will need a brain MRI w/wo contrast to rule it out.
A syrinx can form after a trauma like the car crash u were involved in...some are congenital and r triggered by the trauma. A dr that specializes in the chiari area will be able to tell u which one u have.
ANd if ur syrinx is large it can affect ur extremities.....only the larger ones can be operated on,......they use a shunt or stint depending on size to help move the fluid out of the cavity......
Find the right dr is key.
"selma"
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