First off let me explain why I have created this blog. HEADACHES - that started at the beginning of May and to date have not gone away. I first wrote it off as the end of the school year stress, then I thought the dust from cleaning my classroom, then I thought it was the weather. After three weeks of daily headaches, nausea, lightheadness, and the threat from my loving hubby that he was personally going to take me to the dr - I relented and made an appointment. By the time I see the dr I now can add vertigo to my list of symptoms. I decided to switch general practioners and this would be the first time I would see my new dr. - Dr. B. Imagine that visit hello I'm Carrie Murray and I've had constant headaches for almost a month.
Anyway, as I firmly believe everything happens for a reason - she is concerned. I realize this might be something she would be interested in - I had an MRI in January when my youngest son gave me a mild concussion that a week later I was still having pain from - that turned out to be a major sinus infection that I didn't even know I had. She had the ability to pulll up my MRI report and she gave me a copy of it - THANK GOODNESS. She notices that it states a mild form of Chiari Malformation, (to sum it up it basically means that my brain is a size 10, but my skull is a size 9 and sometimes that becomes problematic) but nothing to worry about unless headaches in the occipatal lobe continue, and to answer that question yes they were usually in the occipatal lobe. She referred me to a neurologist. She gave me some pointers and things to try until I could see the neurologist.
I see Dr. S. on June 15 with my hubby by my side we wait. Dr. S. confirms that I have Chiari (mild) nothing to worry about and you don't need surgery. I think you have migraines. You can add to the list of symptoms an very intense pain that goes down my left arm, some chest pain, more episodes on lightheadness and almost nighly episodes of vertigo. He explains that if you keep taking medicine once you have a headache it actually creates more headaches. So he wanted to try a prevenative medicine (Nortriptiline) and he did wanted to rule out an aneurysm so I had an MRA (shows blood flow). The MRA was normal and to date the Nortriptiline hasn't helped. My husband felt lukewarm about Dr. S. - he felt that he didn't listen to my symptoms, but rather had decided what it was before meeting me. Again everything happens for a reason, I was carpooling with VM to the science camp that we both teach at and she has classic migraines that she sees a neurologist for. She called her neurologist and explained the situation her neurologist said she would review my MRI, my MRA, and my symptoms to see if she agreed with Dr. S.'s assessment. Well, her office called later that week and wanted me to come in to meet Dr. M.
One comment on the MRI report (from January) was see your eye doctor. That was summarized for me by my former doctor as I think the MRI picked up on your lens implants. So I saw my opthamologist Dr. Bib, who I have known for 10 years now. After 30 minutes to provide the recent history, Dr. Bib comes breezes in and I can tell she has not read my most recent history. So I presented to challenges for her to make sure that A and/or B from the MRI weren't causing my headaches. 3 hours later she had concluded that I had a clean bill of health as far as my eyes are concerned.
Again my hubby came with me to meet and visit Dr. M, which we knew would be a 2 hr visit. Dr. M. graciously came in when she was on vacation to meet me. This visit was already different - she introduced herself and said she wanted to review my history so she had straight in her head. She took notes and recorded what I said - she asked question after question. She says I agree that I think you have some migraine issues, but I want you to see a neurolosurgeon. She doesn't think I need surgery, but she wants a neurosurgeon to make that call, since I have symptoms unrelated to migraines. She said she can explain the vertigo and lightheadedness as sinus' and she can explain the pain in my arm as a slipped disk (but doesn't really think that is it). I left with a plan in place - don't live in pain (but again you can't take pain relievers everyday - we'll say 4 times a week), up the Nortriptiline 10mg every week until you see the neurosurgeon, protect your nervous system (b/c you didn't something to piss it off), see a neurosurgeon and she gave me the names of 4 doctors at the Mayfield Brain and Spine Clinic here in Cincy. My husband and I left feeling like I had been listened to, there was a plan in place, and I was hopeful. I have found my neurologist!
So being the good patient that I am, I do an internet search of the doctors who were recommended to me. I find one doc who has Chiari listed as an expertise - so now I have found the neurosurgeon I will see. I call the Mayfield clinic spend 20 minutes recapped my symptoms and she says we need copies of the MRI, MRA, and the CAT scan so Dr. T. can review them and we set up an appointment. Thankfully the little ones were at the babysitter so I take off get my CAT scan results and set off the office in Clifton. I arrive and dutifully give them everything they need including a list of symptoms that I provided Dr. M. So now I am waiting to hear from the clinic. I expect that next week I will hear from them.
When I searched for people with Chiari and/or Chiari sites I found that I have some of the symptoms (some I have had for years, but thought they were 'normal' symptoms that everyone has) but not all of the symptoms. It is frustrating because the only question I want an answer to is: Is my Chiari symptomatic at this point? I know it wasn't in January, but is it now. I am hopeful that Dr. T. will provide that answer to me.
I guess to have some amount of control over the situation I have researched Chiari sites:
Mayo Clinic Definition
Chiari & Syringomyelia Foundation
American Syringomyelia & Chiari Alliance Project
I have learned about what it means to have Chiari and I have accepted that at some point if I am symptomatic I will require brain surgery. Again with that everything happens for a reason thing, I came across a blog titled I'm having brain surgery what's your excuse - I was intrigued and didn't know what kind of brain surgery this person had. I eventually came to the sentence that answered that question for me - Chiari. I'm an information junkie and can handle almost anything if I can prepare for it - so here it is a woman a little younger than me that has recently gone through what one day I may have to go through. I am the first to admit - I was tore up after reading some of her blogs, because it isn't a bed of roses - you don't feel 100% better even 3 months after surgery, BUT (here it is the silver lining) she wrote a great deal about her new normal. And as scary as it may be someday I may have to have a new normal. I can tell you this I don't want to live like this forever and I will keep searching for the answer to What is wrong with Carrie's head?
Symptoms to date:
Daily headache (usually in the back of the head or the left side of my head, but can be in the temples or on top of my head too)
Pain in the back of my neck on the left side
Bouts of nausea (no matter the how severe or mild the headache)
Frequent bouts of lightheadeness
Almost nightly episodes of vertigo
Pain in my left arm
Hurts more when I look up
A lump in my throat that sometimes makes it hard to swallow
Times where it is very difficult to verbalize my thoughts
Here is what I'm doing:
keeping a daily headache diary including symptoms for the day
organizing my increasing amount of information (into a binder of course)
learning to accept that I have this and if I'm symptomatic that this becomes a part of me (but I swear I won't let it define me)
seeing what I can do to understand Chiari
seeing a neurosurgeon
trying to enjoy things more...
Anyway, as I firmly believe everything happens for a reason - she is concerned. I realize this might be something she would be interested in - I had an MRI in January when my youngest son gave me a mild concussion that a week later I was still having pain from - that turned out to be a major sinus infection that I didn't even know I had. She had the ability to pulll up my MRI report and she gave me a copy of it - THANK GOODNESS. She notices that it states a mild form of Chiari Malformation, (to sum it up it basically means that my brain is a size 10, but my skull is a size 9 and sometimes that becomes problematic) but nothing to worry about unless headaches in the occipatal lobe continue, and to answer that question yes they were usually in the occipatal lobe. She referred me to a neurologist. She gave me some pointers and things to try until I could see the neurologist.
I see Dr. S. on June 15 with my hubby by my side we wait. Dr. S. confirms that I have Chiari (mild) nothing to worry about and you don't need surgery. I think you have migraines. You can add to the list of symptoms an very intense pain that goes down my left arm, some chest pain, more episodes on lightheadness and almost nighly episodes of vertigo. He explains that if you keep taking medicine once you have a headache it actually creates more headaches. So he wanted to try a prevenative medicine (Nortriptiline) and he did wanted to rule out an aneurysm so I had an MRA (shows blood flow). The MRA was normal and to date the Nortriptiline hasn't helped. My husband felt lukewarm about Dr. S. - he felt that he didn't listen to my symptoms, but rather had decided what it was before meeting me. Again everything happens for a reason, I was carpooling with VM to the science camp that we both teach at and she has classic migraines that she sees a neurologist for. She called her neurologist and explained the situation her neurologist said she would review my MRI, my MRA, and my symptoms to see if she agreed with Dr. S.'s assessment. Well, her office called later that week and wanted me to come in to meet Dr. M.
One comment on the MRI report (from January) was see your eye doctor. That was summarized for me by my former doctor as I think the MRI picked up on your lens implants. So I saw my opthamologist Dr. Bib, who I have known for 10 years now. After 30 minutes to provide the recent history, Dr. Bib comes breezes in and I can tell she has not read my most recent history. So I presented to challenges for her to make sure that A and/or B from the MRI weren't causing my headaches. 3 hours later she had concluded that I had a clean bill of health as far as my eyes are concerned.
Again my hubby came with me to meet and visit Dr. M, which we knew would be a 2 hr visit. Dr. M. graciously came in when she was on vacation to meet me. This visit was already different - she introduced herself and said she wanted to review my history so she had straight in her head. She took notes and recorded what I said - she asked question after question. She says I agree that I think you have some migraine issues, but I want you to see a neurolosurgeon. She doesn't think I need surgery, but she wants a neurosurgeon to make that call, since I have symptoms unrelated to migraines. She said she can explain the vertigo and lightheadedness as sinus' and she can explain the pain in my arm as a slipped disk (but doesn't really think that is it). I left with a plan in place - don't live in pain (but again you can't take pain relievers everyday - we'll say 4 times a week), up the Nortriptiline 10mg every week until you see the neurosurgeon, protect your nervous system (b/c you didn't something to piss it off), see a neurosurgeon and she gave me the names of 4 doctors at the Mayfield Brain and Spine Clinic here in Cincy. My husband and I left feeling like I had been listened to, there was a plan in place, and I was hopeful. I have found my neurologist!
So being the good patient that I am, I do an internet search of the doctors who were recommended to me. I find one doc who has Chiari listed as an expertise - so now I have found the neurosurgeon I will see. I call the Mayfield clinic spend 20 minutes recapped my symptoms and she says we need copies of the MRI, MRA, and the CAT scan so Dr. T. can review them and we set up an appointment. Thankfully the little ones were at the babysitter so I take off get my CAT scan results and set off the office in Clifton. I arrive and dutifully give them everything they need including a list of symptoms that I provided Dr. M. So now I am waiting to hear from the clinic. I expect that next week I will hear from them.
When I searched for people with Chiari and/or Chiari sites I found that I have some of the symptoms (some I have had for years, but thought they were 'normal' symptoms that everyone has) but not all of the symptoms. It is frustrating because the only question I want an answer to is: Is my Chiari symptomatic at this point? I know it wasn't in January, but is it now. I am hopeful that Dr. T. will provide that answer to me.
I guess to have some amount of control over the situation I have researched Chiari sites:
Mayo Clinic Definition
Chiari & Syringomyelia Foundation
American Syringomyelia & Chiari Alliance Project
I have learned about what it means to have Chiari and I have accepted that at some point if I am symptomatic I will require brain surgery. Again with that everything happens for a reason thing, I came across a blog titled I'm having brain surgery what's your excuse - I was intrigued and didn't know what kind of brain surgery this person had. I eventually came to the sentence that answered that question for me - Chiari. I'm an information junkie and can handle almost anything if I can prepare for it - so here it is a woman a little younger than me that has recently gone through what one day I may have to go through. I am the first to admit - I was tore up after reading some of her blogs, because it isn't a bed of roses - you don't feel 100% better even 3 months after surgery, BUT (here it is the silver lining) she wrote a great deal about her new normal. And as scary as it may be someday I may have to have a new normal. I can tell you this I don't want to live like this forever and I will keep searching for the answer to What is wrong with Carrie's head?
Symptoms to date:
Daily headache (usually in the back of the head or the left side of my head, but can be in the temples or on top of my head too)
Pain in the back of my neck on the left side
Bouts of nausea (no matter the how severe or mild the headache)
Frequent bouts of lightheadeness
Almost nightly episodes of vertigo
Pain in my left arm
Hurts more when I look up
A lump in my throat that sometimes makes it hard to swallow
Times where it is very difficult to verbalize my thoughts
Here is what I'm doing:
keeping a daily headache diary including symptoms for the day
organizing my increasing amount of information (into a binder of course)
learning to accept that I have this and if I'm symptomatic that this becomes a part of me (but I swear I won't let it define me)
seeing what I can do to understand Chiari
seeing a neurosurgeon
trying to enjoy things more...
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