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Nov 02, 2009 - 4 comments
Road to diagnoses
Sunday the 26th of November 2006 was to be the beginning of my Chiari journey. It was a typical Irish weather, cold and wet with little to do but go to bed for a nap as I usually did on these afternoons. Sunday was my free day. My partner Anne went away with her family for the day and as 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, I had just become self employed and was trying to make an impression and a good name for myself. 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, I felt quiet nauseas and needed to get to the bathroom in case I threw up. When I moved to get out of bed the spinning began again, I staggered to the bathroom and did eventually get sick.
Later that evening when this dizziness did not go away I went to the out of hours doctor. I was told by the on call doctor that what I was experiencing was vertigo. She felt it was due to an ear infection and gave me some medication to help with the nausea, she predicted I would be ok in a few days but if not she advised that I go back to my regular GP.
The vertigo did not go away however the nausea did ease so after a week I went to my own GP.
This was to prove to be an eye opening experience, my relationship with my GP had been a difficult relationship because for many years I had been abusing alcohol, I had been in and out of hospitals due to my alcoholism before eventually getting sober in 2002. My GP had seen quiet a bit of me in this time and I was usually drunk so when I staggered into his office on Friday morning he assumed the worst. On entering his office he looked at me over his spectacles said “haven’t seen you in a while Ray, have you been drinking” as a patent and a recovering alcoholic I found his attitude to be disappointing to say the least.
I explained my symptoms of vertigo to him and also a new sensation of “fullness“ I felt in my right ear, he asked about any other symptoms, I explained about the ringing noises I was hearing in my ears but stressed that this had been there for years as was the pain in my shoulders and neck witch often radiated up into the back of my head but which he had dismissed years earlier as stress and anxiety. He dismissed this yet again as stress and proceeded to renew my prescription for the ant nausea medication insisting my problem was an ear infection.
For the next week I was unable to do anything due to this continues vertigo, so eventually I went back to my GP. He was concerned that the vertigo was not clearing up, he spoke to me about a condition called Menears Disease where there was a build-up of fluid in the canals of the inner ear. He now suggested that this was my problem and put me on medication for this.
He advised me that it would take a week or two for the new medication to work. Eventually I went back to work in the beginning of 2007 after the vertigo settled down. However I noticed that I was experiencing a mild dizziness witch was with me all the time. My balance was a bit off as well and I felt tired all the time and my sleeping was not good.
Life went on but my health was I felt not what it should be, I was getting depressed because of this, things just were not right the headaches were getting worse, the pain in my shoulders was getting worse but it was the balance issue that was of most concern for me but I was reluctant to go back to my GP because of the way he treated me on my initial visit with the vertigo. I noticed that a problem that I was diagnosed with years before called Peripheral Neuropathy was also flaring up. The numbness in my feet, the ants crawling on my legs sensation was there again and the mussel twitching seemed to be worse. The doctors who diagnosed the PN said at the time it was due to alcohol abuse.
I began to wonder had my present health issues anything to do with a car accident Anne and I had about six weeks prior to the onset of the vertigo. We both walked away with minor cuts from this high speed car rally accident.
For the next few months things were very difficult as I was experiencing episodes of vertigo with pain, insomnia and constant dizziness, my balance was getting worse as well.
Disaster was to strike when in early January 2008 I blacked out behind the wheel of my car and I crashed into an oncoming car. No one was injured but when I got out I was very distressed and was staggering so the police after breathalysing me took me to a local hospital. When I was assessed in the ER nothing was found apart from high BP witch dropped down and even went low for a period. I was advised to go to my GP if I had any more problems.
In May I was to once again suffer a blackout or drop attack, I was again seen in the ER and this time my bp was so high it was feared I would suffer a stroke. Within minutes my BP was low and for this reason I was admitted under the care of a Cardiologist.
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. I had many cardiac tests done during my stay in hospital but nothing was found. 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. The cardiologist felt my problem was due to “some sort of chronic central nerve degeneration” he arranged an outpatient appointment with an ENT neurologist as he felt it was a vestibular issue (vestibular is the area of the brain that deals with hearing and balance and is located in the brainstem)
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 (Nystagmus is an involuntary eye movement) 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 “down beat” 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 this Syrinx or cyst I had in my spinal cord. He said he still felt the vertigo was due to BPV ant 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 neurosurgeon reported a Chiari Malformation type 1 with borderline herniation, a communicating Syringomyelia with needs further investigating.
I was seen by a urologist in October this year as bladder problems for a patent DX with CM and Syringomyelia is a cause for concern. I had a Urodynamics test to check how my bladder was functioning, this has shown hesitancy and issuers with nerve damage due to compromise of the nerve pathways in my spinal cord due to the Syrinx. I am due to see the neurosurgeon on the 10th of November to discuss further treatment.
Sunday the 26th of November 2006 was to be the beginning of my Chiari journey. It was a typical Irish weather, cold and wet with little to do but go to bed for a nap as I usually did on these afternoons. Sunday was my free day. My partner Anne went away with her family for the day and as 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, I had just become self employed and was trying to make an impression and a good name for myself. 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, I felt quiet nauseas and needed to get to the bathroom in case I threw up. When I moved to get out of bed the spinning began again, I staggered to the bathroom and did eventually get sick.
Later that evening when this dizziness did not go away I went to the out of hours doctor. I was told by the on call doctor that what I was experiencing was vertigo. She felt it was due to an ear infection and gave me some medication to help with the nausea, she predicted I would be ok in a few days but if not she advised that I go back to my regular GP.
The vertigo did not go away however the nausea did ease so after a week I went to my own GP.
This was to prove to be an eye opening experience, my relationship with my GP had been a difficult relationship because for many years I had been abusing alcohol, I had been in and out of hospitals due to my alcoholism before eventually getting sober in 2002. My GP had seen quiet a bit of me in this time and I was usually drunk so when I staggered into his office on Friday morning he assumed the worst. On entering his office he looked at me over his spectacles said “haven’t seen you in a while Ray, have you been drinking” as a patent and a recovering alcoholic I found his attitude to be disappointing to say the least.
I explained my symptoms of vertigo to him and also a new sensation of “fullness“ I felt in my right ear, he asked about any other symptoms, I explained about the ringing noises I was hearing in my ears but stressed that this had been there for years as was the pain in my shoulders and neck witch often radiated up into the back of my head but which he had dismissed years earlier as stress and anxiety. He dismissed this yet again as stress and proceeded to renew my prescription for the ant nausea medication insisting my problem was an ear infection.
For the next week I was unable to do anything due to this continues vertigo, so eventually I went back to my GP. He was concerned that the vertigo was not clearing up, he spoke to me about a condition called Menears Disease where there was a build-up of fluid in the canals of the inner ear. He now suggested that this was my problem and put me on medication for this.
He advised me that it would take a week or two for the new medication to work. Eventually I went back to work in the beginning of 2007 after the vertigo settled down. However I noticed that I was experiencing a mild dizziness witch was with me all the time. My balance was a bit off as well and I felt tired all the time and my sleeping was not good.
Life went on but my health was I felt not what it should be, I was getting depressed because of this, things just were not right the headaches were getting worse, the pain in my shoulders was getting worse but it was the balance issue that was of most concern for me but I was reluctant to go back to my GP because of the way he treated me on my initial visit with the vertigo. I noticed that a problem that I was diagnosed with years before called Peripheral Neuropathy was also flaring up. The numbness in my feet, the ants crawling on my legs sensation was there again and the mussel twitching seemed to be worse. The doctors who diagnosed the PN said at the time it was due to alcohol abuse.
I began to wonder had my present health issues anything to do with a car accident Anne and I had about six weeks prior to the onset of the vertigo. We both walked away with minor cuts from this high speed car rally accident.
For the next few months things were very difficult as I was experiencing episodes of vertigo with pain, insomnia and constant dizziness, my balance was getting worse as well.
Disaster was to strike when in early January 2008 I blacked out behind the wheel of my car and I crashed into an oncoming car. No one was injured but when I got out I was very distressed and was staggering so the police after breathalysing me took me to a local hospital. When I was assessed in the ER nothing was found apart from high BP witch dropped down and even went low for a period. I was advised to go to my GP if I had any more problems.
In May I was to once again suffer a blackout or drop attack, I was again seen in the ER and this time my bp was so high it was feared I would suffer a stroke. Within minutes my BP was low and for this reason I was admitted under the care of a Cardiologist.
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. I had many cardiac tests done during my stay in hospital but nothing was found. 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. The cardiologist felt my problem was due to “some sort of chronic central nerve degeneration” he arranged an outpatient appointment with an ENT neurologist as he felt it was a vestibular issue (vestibular is the area of the brain that deals with hearing and balance and is located in the brainstem)
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 (Nystagmus is an involuntary eye movement) 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 “down beat” 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 this Syrinx or cyst I had in my spinal cord. He said he still felt the vertigo was due to BPV ant 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 neurosurgeon reported a Chiari Malformation type 1 with borderline herniation, a communicating Syringomyelia with needs further investigating.
I was seen by a urologist in October this year as bladder problems for a patent DX with CM and Syringomyelia is a cause for concern. I had a Urodynamics test to check how my bladder was functioning, this has shown hesitancy and issuers with nerve damage due to compromise of the nerve pathways in my spinal cord due to the Syrinx. I am due to see the neurosurgeon on the 10th of November to discuss further treatment.
My neurologist first thought I had either multiple sclerosis, a transient ischemic attack, or BPV. He ordered an MRI of my brain and found the Chiari but didn't feel it was symptomatic enough to investigate further until I asked "Is this why I go blind when I tilt my head to reach shelves?" An MRI of my cervical spine followed but he did it without contrast. The doctor who read the MRI said it looks like there could be a syrinx and I should have it done again with contrast. I had that done on Friday and am waiting for the results. I'm also waiting to see a Chiari/Syringomyelia Specialist on February 15. I feel like I'm getting worse every week. I can't take care of my little boys anymore which is really hard for me. I hope you are doing better. All of the symptoms you're experiencing sound really familiar. Everyone kept saying I was feeling poorly because of having my boys thirteen months a part. So they always said it was because I was tired, under too much stress, or something like that. I finally went to my GP for vertigo. I had it for three weeks. I still have trouble but it comes and goes now instead of being constant. I have a headache everyday, neck, shoulder, arm and chest pain. I start sweating when I'm sitting on the couch doing nothing. It's actually below zero here today and I'm wearing capri pants and a tank top. My feet and hands feel like blocks of ice the rest of me is sweating. My husband thought I was exaggerating until today. He went to his own doctor for high cholesterol and said he was worried about me and described my symptoms. His doctor said he'd only seen one patient like that before and asked if we had ever heard of Chiari so he finally believes me and is being more helpful with the boys and other stuff. Like I said, I hope you are doing better and things went well with the neurosurgeon in November. I dont' know how you manage to work such long days. I hope it doesn't offend you if I pray for you.
it is frustrating trying to get a DX and when you do it is a mixture of relief and frustration because you have to do so much research to find out about it. There are so many questions that you need to get answers to....Thanks for the prayers they are gratefully aprecated....
Ray
Ray
In the nine years following your decompression surgery what have you been doing for pain management ? I have just been decompressed and going for my 4 week follow up tomorrow. My Family doctor will not refill my pain meds and i am hoping my NS will. Right after surgery for couple weeks I was doing good while taking my pain meds. The last two weeks have been horrible fighting the pain. My Family doc told me to take 800 Mg of Ibuprofin every 8 hours and it does not help my arm and shoulder pain any. I cannot rest at night. It feels like my head weighs 100 pounds and my pillow feels like concrete so i am constantly turning side to side. I got one of those foam memory pillows that has helped some. I still have somewhat of a dull headache and some of it is from the surgery itself. My arm shoulder and between my shoulder blades is the worse pain. Also I have a sensation of restless leg syndrome only it is all over my body, i feel like screaming sometimes. I am hoping my syrinx is gone when I go tomorrow. It is a large one from c2 to t4 and is a bar bell shape being large on both ends to the point that not much of my cord is left. I was so sick after my decompression that I stayed in ICU for two days vomiting. Recovery has been slow for me as most of the time I am still on the couch and only up for short periods of time. I have a weird popping in my head when I brush my hair and slightly move my head. It's on top and on the right side. Also for a few days when I walked I could hear a clicking sound every step I took, it was at the base of my skull where the bone was removed. I hope all goes good for you and any advice on what to do for pain would be greatly appreciated.
Good news. My follow up MRI showed my syrinx had collapse over half what it was prior to chairi decompression surgery. It has only been 4 weeks my doc was amazed at how much of it had disappeared. He gave me a script for more pain medication as i also have a bone spur pinching a nerve. The weird popping sound i am hearing I am told is air on the brain from opening the dura to put in a larger patch to give the brain more room. That will eventually be absorbed and go away. I will return in one month after undergoing Physical therapy for another MRI and to diiscuss whether I will have surgery for the bone spur. He also assured me that the bone spur surgery will be a piece of pie compared to the surgery i have just indurred. To say the least I am feeling allot more positive today after my follow up visit and MRI results.
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