Today the phone call I've been waiting for came around 3:15 (after my class). I picked up the phone and the nice female on the other line said this is Mayfield Clinic, uh Dr. T. would like to see you. Information about where is his office is and the soonest appointment was - August 8 at 3:00 or 3:30, but you need to be here 30 minutes early for paperwork. I told her 3:00 was fine. I noticed my hands were a little shaky when I hung up the phone and I was/am a bit nervous. I mean on the one hand I can't wait to see the inside of my head in 3D form, but he is a neurosurgeon so I'm not sure what to expect. I think he will discuss his findings from my latest MRI and I hope give a cool picture (again the scientist in me - I want to show my students), but I don't know what the rest of the appointment will entail. I mean if he says my symptoms are related to my Chiari Malformation then I know in the next breath it will be either your symptoms aren't severe enough to warrant surgery or your symptoms indicate you need surgery. I if it is my Chiari I'm nervous no matter what he says, because then I'm symptomatic and as I've told you before I know at some point (be it sooner or later) they are going to open my head and cut part of my skull out to allow my brain more room. So I will wait 2 weeks wondering and anxious about the appointment.
What will I do in the mean time:
1. Do my paper for my class the rough draft and the final copy - not looking forward to this! :(
2. Take the girls to Ohio State U for their college visit.
3. Catch a Red's game with Mike and Emily
4. Inform my boss about my upcoming appointment
3. Set up my classroom and get working on my beginning of the year plans
I look at it this way - if I hear your symptoms aren't related to Chiari or they don't warrant surgery then I get a relaxing few weeks before school starts and I'm good with that. I really feel like the I have no control over what Dr. T. is going to say, but I do have control over my classroom. Those of you who are reading this probably already could have predicted that is what I would do.
I feel like we are getting somewhere in the journey to figure out what exactly is wrong with Carrie's head. :)
Monday, July 25, 2011
Saturday, July 16, 2011
Second Time was a charm
So yesterday with my trusty drive (AKA hubby fabulouso) at the wheel and one pill in my tummy, we approached West Image. They were ready for me as soon as I got there, so to make sure I didn't have a repeat performance from the day before, I took pill number 2. I was feeling pretty relaxed and they allowed me a cool damp washcloth, this worked for me. They were able to put the cushions next to my head to make sure it didn't move, which they hadn't been able to do the day prior. I thought about happy things like my weightless flight adventure, seeing a shuttle on the launch pad, seeing dolphins and sea turtles playing in the ocean, my kids, and places in London with my hubby, but I can honestly say I couldn't stay in those places. Maybe I was curious about all the different noises and vibrations going on around me, but I made it through!! With the MRI they monitored my pulse and I was told that they day before it was a strong pulse - I commented I bet it was. It took 15 min to make the CD for me to take b/c of all the images. I can't wait to see what my head in 3D form on an MRI - I make ask for a pix to show my students. So now I wait, my information is in the trusty hands of Dr. T. Cross you fingers and say a prayer that things progress quickly. :)
Thursday, July 14, 2011
Second Time is a Charm (or at least I'm hoping that is the case)
So I was all prepared for my MRI today, but it was different than other the other MRI and the MRA that I had. They can't put a wet cloth over my face and they need to put cushions on the side of my head - well I will say that I tried. I really really tried. I was through the second or third scan and I felt the body temperature rising and we had to stop. They told me this happens frequently and suggested sedation. So I called Dr. T to phone in a prescription which they gladly did. So tomorrow my hubby is driving to the MRI (w/ sedation you need a driver) and he can pump me up for this. I swear I don't know what happened - one minute I was saying I'm doing it and the next minute I needed to get out.
I talked to my mother-in-law today who experienced the same thing with her MRI and needed sedation, so apparently they weren't lying when they said it happens to other people.
I discovered that I will have a 3D image of my brain, which I'm excited to see (you know the scientist in me). I think that will be really cool, but I think somewhere underneath all of my anxiety is the thought we will have a clear picture of what is going on and where on one hand I want to know on the other hand I know that if this is Chiari ruling my world right now it is very possible that the next step (or a step at some point in time) will be surgery. And I can't lie that is scary as hell - I mean how do you explain to your 2 yr old and your nearly 4 yr old mommy can't hold you b/c she has had brain surgery (and the recovery time can be lengthy- ughh). Back on track - I really do need to know and whatever is supposed to happen will happen.
I will let you know how tomorrow goes - tomorrow I will have Valium in my system so I should be feeling pretty good! LOL :)
I talked to my mother-in-law today who experienced the same thing with her MRI and needed sedation, so apparently they weren't lying when they said it happens to other people.
I discovered that I will have a 3D image of my brain, which I'm excited to see (you know the scientist in me). I think that will be really cool, but I think somewhere underneath all of my anxiety is the thought we will have a clear picture of what is going on and where on one hand I want to know on the other hand I know that if this is Chiari ruling my world right now it is very possible that the next step (or a step at some point in time) will be surgery. And I can't lie that is scary as hell - I mean how do you explain to your 2 yr old and your nearly 4 yr old mommy can't hold you b/c she has had brain surgery (and the recovery time can be lengthy- ughh). Back on track - I really do need to know and whatever is supposed to happen will happen.
I will let you know how tomorrow goes - tomorrow I will have Valium in my system so I should be feeling pretty good! LOL :)
Alas We Are Moving Forward
Two weeks ago I registered with Dr. T's office, and I was told in 3 -5 business days I would hear something. Well, on the 6th business day I called and I was told that a nurse was checking with the Dr. for exact angles needed for a second MRI, but I didn't hear from the nurse. So I called and she said he was back in surgery (ok that's fine he needs to worry about the person in surgery not me and I let it go) - that was last Thursday. On Monday, I called and was told that the nurse would call but she is off on Mondays - ok fine. See with time on my hands, wanting answers, and being me - I was impatient. On Tuesday at 3:45ish,(after my husband urged me) I spoke with the nurse she told me I was on her list of people to call. Anyway, she called to upto set up the appointment. I got the call... my appointment is Thursday 7/14 at 11:00 at West Image.
Curiosity and wanting to know where I'm going I googled West Image ( http://www.westimagemri.com/). I read about it and found out some interesting things...
1. Providing Greater Cincinnati with the finest most up- to- date MRI scans available
2. These high quality images provide your doctor or surgeon the necessary information for an exact diagnosis, or when an operation is called for, the exact surgerical point for a successful outcome.
3. Made by GE
4. Fast
5. They have larger openings shorter bore. Well lit, vented design makes patients more comfortable. When you're claustrophobic - fast and bigger are good things to me.
I feel like we are moving forward and attempting to answer what exactly is wrong with Carrie's head? :)
Curiosity and wanting to know where I'm going I googled West Image ( http://www.westimagemri.com/). I read about it and found out some interesting things...
1. Providing Greater Cincinnati with the finest most up- to- date MRI scans available
2. These high quality images provide your doctor or surgeon the necessary information for an exact diagnosis, or when an operation is called for, the exact surgerical point for a successful outcome.
3. Made by GE
4. Fast
5. They have larger openings shorter bore. Well lit, vented design makes patients more comfortable. When you're claustrophobic - fast and bigger are good things to me.
I feel like we are moving forward and attempting to answer what exactly is wrong with Carrie's head? :)
And the Journey Begins...
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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