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My Story, by ROD

My story, so far by ROD

Sunday the 26th of November 2006 was to be the beginning of my Chiari journey. It was a typical Irish winter like day, the weather was cold and wet, with little to do but go to bed for a nap as I usually did on these Sunday afternoons, you see Sunday was my free day. I was working Monday through Saturday putting in 14 hours most days and I was finding that I was close to exhaustion by the weekend. Sunday was my catch up on sleep day, I usually took some time out to rest and get a nap.  
What was different about this particular day was to strike me when I awoke suddenly from my nap to a world that was spinning. The room and everything around me was spinning and I had to grab on to the edge of the bed as I felt I was going to fall even though I was laying down. After a few minutes the spinning stopped, then it would start again, this was my introduction to vertigo. Today vertigo is part of my everyday life.
After many trips to my GP I got a diagnoses of Menears Disease,I was treated with medication for this but with no success, I continued to have the vertigo.

For the next few months things were very difficult as I was experiencing episodes of vertigo and now I was also having problems with pain in my neck shoulders and chest, I had constant constant dizziness, my balance was getting worse as well and my sleep patterns were all over the place .
In January 2008 I blacked out, I was told by doctors in my local  A& E that this was a "Drop attack,k" I was found to have high BP witch dropped down going clangorously  low for a period. 
I was admitted under the care of a Cardiologist. I had all kinds of Cardiac testing but they all came back normal the Cardiologist was of the opinion that my problems were due to a central nervous system issue.....  
During my stay in hospital I noticed a lump on the back of my neck witch was not visible but you could feel, I said it to one of the doctors in the hospital but he dismissed it as a swollen lymph node or gland. The nursing staff also noted that I had a “lazy bladder” as I was having problems when passing urine, this surprised me as I was not aware of it Ok I was getting the urge but then when I went to the bathroom the urge would pass, I thought this was normal or it was some thing that happened as I was getting older. Some basic urology tests were done but again nothing was found.
Eventually my GP decided to send me to see an ENT doctor because I was presenting every week with different problems......

It took several months to get an appointment with the ENT doctor and it was not until October of 08 that I got to see him. His initial view was that I had BPV (benign processional vertigo) not Menears Disease, he arranged a VNG test as he noted Nystagmus on examination he also expressed his surprise that the mass on my neck had not been investigated as I was in the risk category for cancer due to my age (over 40)  and the fact I smoke. He ordered an MRI of my head and C-Spine.
The VNG test was to show  Nystagmus, there was no mention of the mass on the MRI report. There was however a mention of a “Syrinx” witch the ENT doctor openly admitted he knew nothing about. He said he was going to get me seen by a neurologist for a second opinion on the vertigo.  He said he still felt the vertigo was due to BPV and the treatment for this was physiotherapy, however before that he wanted to send the MRI scans to a neurosurgeon to be certain that PT would not make the Syrinx worse. The Neurologist agreed that the Vertigo was due to BPV.

At this point I need to say that in 1994 I noticed fasciculations in both my calf muscles, after seeing a neurologist and having nerve conduction study (EMG) done, it was felt at that time I had a mild neuropathynothing further was done at the time.

In November of 08 I had my first appointment with a Neurosurgeon. It was to prove to be an interesting meeting. My scans were missing and I was sent home with out seeing the NS. He would not see me without having the actual films......
This I was to learn over the next few weeks was the beginning of my worst nightmare, dealing with a rare condition in this country. 

A few days after my first appointment I did get to see the NS, I was told I had a Syrinx at C7 > T2, Fused vertebra C7 > T2 A Neurenteric Cyst at T1 witch is described as a variant of the split notochord syndrome (very rare with less than 25 adult case described in medical literature) There is some question about Borderline CM or Chiari 0 but Chiari 0 is (Another form of the disorder, under debate by some scientists, is Type 0, in which there is no protrusion of the cerebellum through the foramen magnum but headache and other symptoms of CM are present) controversial and not recognized by some Neurosurgeons, as a result I am in limbo at this time.

In a effort to get information on my condition I went to the internet because I felt I was getting the run around from Doctors who it seemed to me knew little or nothing about my illness.

During my search I could find NO Irish CM sites, I did find a site in the USA where I met others with CM, it helped to chat with others who understood how I was feeling because they were feeling the same, this site is MedHelp, a good place with loads of support and helpful information on all kinds of medical issues, here I was to meet Jackie who has a Son with CM and comes from Ireland all be it she is a DUB lol...........

Having chatted with Jackie on line about our common interest in CM Jackie suggested starting a blog as we both feel that whilst Chiari is rare there must be others out there who are experiencing the pain and confusion that goes with a Chiari DX and the frustration of dealing with doctors who just dont have the knowledge to treat this.

Monday 05th July.
I had an appointment this morning with an Otolaryngologist (ENT) regarding my ongoing balance, vertigo and dizziness problems, at the appointment the Otolaryngology team felt that they need to liaise  with the Neurosurgery team. They feel a multi-discipline approach is the way forward. The Vertigo is NOT due to BPV and the Otolaryngologist is unsure what is causing it.
I found the appointment disappointing,  my health problems has been going on for a number of years now, it is affecting all aspects of my life, I accept my condition is congenital and chronic it is however progressing, I dont want them to wait until I am disabled before doing something in the way of treatment, I just wish one of these Doctors would step up to the plate and decide some kind of treatment plan (other than "wait & see") or at least take the time to find out about my condition, that way they can call it by name and not "that problem in your back" as the Doctor yesterday kept referring to it as until I told him the name Syringomyelia. By his own admission my NS has seen a Neurenteric Cyst only once before in a teenager, none of the other doctors have come across it before. 
It is hard to have confidence in Doctors when you feel so frustrated.

Tuesday 13th of July
I went to see my Neurosurgeon today we discussed the possibility that some of my symptoms are getting worse, he feels the surgery to remove the "Intradural Neurenteric Cyst witch is located on the anterior aspect of my cord" (front) makes surgery very difficult and high risk for complications and injury during and after surgery. He has started me on new medication for pain and will review me in two months or if my symptoms continue to get worse. He is concerned at the onset of cramping and pain in my lower legs when walking witch has been happening for the past five or six weeks.
 For now it's wait & see.