I haven't posted anything in a couple of days....This past Sunday, I had to make a trip to the ER due to severe pain in my neck, shoulders and back. I just knew I had ruptured another disc in my neck, same pain as before.
After being triaged and listing the many medications I am on, they finally got me back into a room. The doctor came in and told me that he was ordering an MRI on my neck to see if a disc had ruptured and ordered a shot of Toradol and Stadol to help with the pain. Of course these are 2 meds I am already on for pain and they didn't work at home, guess he thought they might help me better if someone stabbed me with a needle while giving them to me.....NOT.
After the MRI, the doctor came back in, imformed me that everything looked the same....which meant I still have a bulging disc and nothing more....told me that he honestly had no clue why I was hurting the way I was and sent me on my way with prescriptions for Flexaril, Steroid pack and Lortabs. Like I need anymore pain meds or muscle relaxers!!! Oh, well.
The next day, Monday, I called my neurologist and let her know what was going on and asked if she could go ahead and set up an appointment for the full brain MRI again. Tax money is coming so I will be able to pay....watch and see if my ER visit didn't go ahead and max me for out of pocket and now I won't have to pay anything!!!
MRI will be done on Feb. 17,2011 at 9am.....also, still haven't heard anything on my disability. I have been trying to think of it as no news is good news....RIGHT????
Feb 9, 2011
Feb 4, 2011
The Insurance Dilemma
I have been trying to figure out what the point is to having insurance??? I am glad I have it to help pay for my prescriptions, but it doesn't help when you have to have a procedure done and the facility wants $300 up front. When you are unable to work do to a condition that is beyond your control, where do they expect the money to come from? I don't know about you, but my money tree never sprouted in my backyard!!
My mother has been paying for my insurance out of pocket for the last few months just so I can still be covered, thank you Mom!!!
I was set up for an MRI of my whole brain and neck to check for other underlying conditions that may be contributing to my migraines and when the facility called me to confirm my appointment they also wanted to confirm my payment of an arm and a leg....I kindly told them that I would have to reschedule at another date and time. Nice, huh??
The next day, I contacted the doctor's office to let them know what was going on and set up another appointment with them. Well, when I went in we came to the conclusion that all we can do at this point in time is hope and pray that there isn't anything "serious" such as a tumor or lesions that might progress rapidly until the time when I am able to have that MRI done.
I am still trying to figure out why there wasn't a full brain MRI done when all this started??? One would think that might have been an appropriate place to start BEFORE cutting away a section of some one's skull. But what do I know? I'm not a doctor.....
The insurance dilemma is not mine alone. There are so many others that need insurance and don't qualify for one reason or another for State funded insurance. I am one of them. I have no work related income, but I do have child support so that boots me over the income cut off for Medicaid....but, I can't continue to carry my out of pocket insurance forever. So what is a person to do? In my case, I have to suffer, just like so many others....Something just doesn't seem right about this????? The phrase, "Catch 22" comes to mind.
After the month of February, I will no longer have any insurance unless, God willing, my disability is approved. I'm not sure how well my headaches are going to react to not having ANY meds. They already don't get much relief as it is with medication. We shall see.
I continue to pray each and every day for all those in need and in pain. Maybe someday there will be some sort of end to the insurance dilemma!!!
My mother has been paying for my insurance out of pocket for the last few months just so I can still be covered, thank you Mom!!!
I was set up for an MRI of my whole brain and neck to check for other underlying conditions that may be contributing to my migraines and when the facility called me to confirm my appointment they also wanted to confirm my payment of an arm and a leg....I kindly told them that I would have to reschedule at another date and time. Nice, huh??
The next day, I contacted the doctor's office to let them know what was going on and set up another appointment with them. Well, when I went in we came to the conclusion that all we can do at this point in time is hope and pray that there isn't anything "serious" such as a tumor or lesions that might progress rapidly until the time when I am able to have that MRI done.
I am still trying to figure out why there wasn't a full brain MRI done when all this started??? One would think that might have been an appropriate place to start BEFORE cutting away a section of some one's skull. But what do I know? I'm not a doctor.....
The insurance dilemma is not mine alone. There are so many others that need insurance and don't qualify for one reason or another for State funded insurance. I am one of them. I have no work related income, but I do have child support so that boots me over the income cut off for Medicaid....but, I can't continue to carry my out of pocket insurance forever. So what is a person to do? In my case, I have to suffer, just like so many others....Something just doesn't seem right about this????? The phrase, "Catch 22" comes to mind.
After the month of February, I will no longer have any insurance unless, God willing, my disability is approved. I'm not sure how well my headaches are going to react to not having ANY meds. They already don't get much relief as it is with medication. We shall see.
I continue to pray each and every day for all those in need and in pain. Maybe someday there will be some sort of end to the insurance dilemma!!!
Feb 3, 2011
New Link....
I have added a new link to the Conquer Chiari website...it gives alot of interesting information and probably more technical explanations than I can. I hope it will help with any questions!!
I'm Not Crazy. The Pain is Real...
I was really nervous about going to yet another doctor. What was she like? Was she going to think I was crazy? Because I was already feeling pretty crazy by this point!!!
She was great....she still is great, I am still seeing her. She also suffers from migraines, so she actually takes what I say to heart.
Well, we discussed my symptoms, length and severity of the migraines, past history of illnesses...the whole nine yards. This where the "home pharmacy" begins.....She started me out on Neurotin and Verapamil along with some samples of Maxalt, to see if these will work on my migraines....the answer to that is no, at least not for mine. Then we moved on to a different set of meds. I can't really remember the order in which I was placed on and pulled off of some of these, but the list keeps growing.
At this time, February, 2011, I am on Topamax, Fioricet, Stadol and Zanaflex....In the past few months I have been on Zoloft (side effect of Topamax can be depression, oh joy!!!), then that was changed to Cymbalta, which made me nauseous everyday so that is no longer an option. Soma which was changed to the Zanaflex because it works different and my muscle spasms have gotten worse. The list goes on and on. Now, mind you, as of this date and time, these still have not gotten me past my migraines or muscle spasms.
The doctor said that I have what is referred to as Status Migranosis, which means a continual migraine. Since my surgery in October, I have had a total of 5 days without a migraine and those are not back to back days. And they have been after I was given a 3 day regimen of meds to take to try and break the cycle. Well, it works...after the third day, I am usually migraine free. Come the fourth day I am right back where I started.
She also told me that chances are, the reason my Chiari became "active" is due to the fusion surgery I had previously. Remember? Where they had to put me in a harness and pull back in alignment? Any who. The wonderful thing about my Neurologist now, is that she is trying to help me get my disability. She has already told me and "them" that there is no possible way I can work with the pain I am in and the loss of balance I have at times.....She knows I'm not crazy!!!!! The pain I feel is real...
Just a note: always remember that just because someone doesn't "look" sick doesn't mean they aren't. To look at me, you can't tell I have a condition that is debilitating, but I do and it is just as important to spread the word about it as it is for any other serious, life threatening condition.
She was great....she still is great, I am still seeing her. She also suffers from migraines, so she actually takes what I say to heart.
Well, we discussed my symptoms, length and severity of the migraines, past history of illnesses...the whole nine yards. This where the "home pharmacy" begins.....She started me out on Neurotin and Verapamil along with some samples of Maxalt, to see if these will work on my migraines....the answer to that is no, at least not for mine. Then we moved on to a different set of meds. I can't really remember the order in which I was placed on and pulled off of some of these, but the list keeps growing.
At this time, February, 2011, I am on Topamax, Fioricet, Stadol and Zanaflex....In the past few months I have been on Zoloft (side effect of Topamax can be depression, oh joy!!!), then that was changed to Cymbalta, which made me nauseous everyday so that is no longer an option. Soma which was changed to the Zanaflex because it works different and my muscle spasms have gotten worse. The list goes on and on. Now, mind you, as of this date and time, these still have not gotten me past my migraines or muscle spasms.
The doctor said that I have what is referred to as Status Migranosis, which means a continual migraine. Since my surgery in October, I have had a total of 5 days without a migraine and those are not back to back days. And they have been after I was given a 3 day regimen of meds to take to try and break the cycle. Well, it works...after the third day, I am usually migraine free. Come the fourth day I am right back where I started.
She also told me that chances are, the reason my Chiari became "active" is due to the fusion surgery I had previously. Remember? Where they had to put me in a harness and pull back in alignment? Any who. The wonderful thing about my Neurologist now, is that she is trying to help me get my disability. She has already told me and "them" that there is no possible way I can work with the pain I am in and the loss of balance I have at times.....She knows I'm not crazy!!!!! The pain I feel is real...
Just a note: always remember that just because someone doesn't "look" sick doesn't mean they aren't. To look at me, you can't tell I have a condition that is debilitating, but I do and it is just as important to spread the word about it as it is for any other serious, life threatening condition.
Recovery??
After every surgery you are told that there will be some pain but that it will ease up and "we will see you in about 6 weeks for your follow up". Well, my Neurosurgeon's office heard from me MANY times before that 6 week follow up....My headaches were horrible, I could hardly walk without losing my balance (still) and I was absolutely miserable. Just to make sure everyone understands, not all decompression surgeries lead to more problems.....there are some that are successful. All Chiari patients are different and so are their symptoms and recovery times.
The surgeon, in the meantime, has referred me to another Neurologist in Little Rock due to the migraine that I had while in ICU post surgery....we will get to that soon.
But before my 6 week follow up, I was in the ER at the same hospital my surgery was done with another severe migraine and feeling like my brain was on fire. All the time up to now I had still been having "headaches" but was told by the surgeon's nurse that it was all normal, part of the healing process....maybe so, but the one that landed me in the ER was far from normal.....but the ER doctor called the surgeon, who came to see me at the hospital and informed me it was just another migraine and that he looked at the CT scan the ER doc had ordered and everything was healing nicely. After a big shot of Morphine and Phenergan, I was sent on my merry way back home to await my appointment with the new Neurologist. That was the last time I saw my surgeon. Once surgery is complete, it is no longer their problem....at least that is how I was made to feel.
Wow. We are almost up to date......thank you all for your patience if I tend to ramble or get of track......my brain doesn't quite work the way it use to.
The surgeon, in the meantime, has referred me to another Neurologist in Little Rock due to the migraine that I had while in ICU post surgery....we will get to that soon.
But before my 6 week follow up, I was in the ER at the same hospital my surgery was done with another severe migraine and feeling like my brain was on fire. All the time up to now I had still been having "headaches" but was told by the surgeon's nurse that it was all normal, part of the healing process....maybe so, but the one that landed me in the ER was far from normal.....but the ER doctor called the surgeon, who came to see me at the hospital and informed me it was just another migraine and that he looked at the CT scan the ER doc had ordered and everything was healing nicely. After a big shot of Morphine and Phenergan, I was sent on my merry way back home to await my appointment with the new Neurologist. That was the last time I saw my surgeon. Once surgery is complete, it is no longer their problem....at least that is how I was made to feel.
Wow. We are almost up to date......thank you all for your patience if I tend to ramble or get of track......my brain doesn't quite work the way it use to.
The Whirlwind
While we are waiting for the Neurosurgeon to schedule an appointment with a specialist I guess it would help if I filled you in on what some of my symptoms were at that time, now remember this was about 7 months prior to where I am now....
My migraines had become worse. I was losing my balance and had tingling and numbness in my hands and feet. The ringing in my ears was so loud that at times that is all I could hear. I couldn't walk down the hallway without running into walls. So, needless to say, I KNEW something was not right.
Ok. The appointment was made with a reknowned Neurosurgeon in Little Rock and my husband and I came to see him. He agreed that it was Chiari Malformation I (there are different stages) and that he recommended surgery and went over the risk associated with all surgeries and stated that he could not promise that all my symptoms would be gone, but that it should alleviate my migraines and I would be fine. Surgery date was set for October 5, 2010.
September, 2010 I had run out of vacation time, sick time and comp time at work. I had a decision to make and the only logical one was to resign due to medical problems because there was no way of knowing when or if I would be able to return. So I resigned. I also forgot to mention that I had started the slow, lengthy, drawn out process of filing for my disability (in July) after I realized that this whole situation was not going to be a quick and easy one to heal from. I am STILL waiting on an answer, by the way..........
Well, unable to pay the rent or our carpayment, we lost our vehicle and had to figure out where our family of five was going to live all while trying to wrap my mind around having brain surgery and processing the whirlwind that had become my life.
My mother and step father, (God love them!!!!) called and offered for us to move in with them. They live in Little Rock, surgery was set to be there and there was no way I was going to be able to travel much of anywhere after my surgery. It just made sense....so like the Beverly Hillbillies, without the money, we packed up our house, loaded the Uhaul and moved in with my mother. The saddest part of that whole thing, leaving our Harley dog with my best friend because we couldn't bring him with us....and of course, moving away from friends and my husband's family. This was all in the middle of September, 2010.......
October 5, 2010 rolls up and it is time for surgery. Please note that I am not a doctor, so all the medical jargin didn't make alot of sense to me so I am explaining it the way I had it explained to me....I was informed that I would have a strip of hair shaved off the back of my head where the incision would be made BUT that I would already be unconcious when that happened (whew....Right???), then they would make the incision, cut away a section of my skull and determine if they needed to expand the dura (lining around the brain) with either human donor or cow donor muscle, they would sew me back up and I would be in ICU for a few days, then a regular room and then home.....Sounds pretty simple, cut and dry?????
After the surgery, the surgeon goes out and talks to my multitude of family in the waiting room and tells them that the surgery went well, that he removed a section of my skull at the base of head and also the first vertabrea, but he didn't feel the need to cut into the dura because when he did the ultrasound on my brain, the blood flow was much better and he felt that was all that needed to be done. The next thing I remember is waking up in recovery, in severe pain and the nurses calling the doctor on the phone trying to figure out what he wanted to give me because my room was ready in ICU and they couldn't take me down with all the pain I was in. One of the nurses in Recovery kept telling me to take deep breaths...ok, really??? So I was trying to keep from crying and trying to breathe deep while the lady in the bed next to me was complaing that "she didn't want Morphine, she told them that before her elbow surgery".....I told the nurse to give it to me then!!!
FINALLY, my pain eased enough to move me to the ICU floor, I am sure the Recovery room nurses were relieved when that time came, but anyway.....I had family coming in two at a time to visit and trying not to cry because they knew I would cry too, I can be a big ole baby like that sometimes. I vividly remember my Daddy coming in to see me and he had tears in his eyes, my brother too. It was so good to see them there.....have to break for a minute, got a little emotional. Sorry.
....day two in ICU, I have a horrible migraine. Are you kidding me? This was the whole reason I had the surgery.
....day three I am move to a regular room, still hurting like all get out
....day four, same as day three.
....day five....I get to go home!!! Yippee!!!!
My migraines had become worse. I was losing my balance and had tingling and numbness in my hands and feet. The ringing in my ears was so loud that at times that is all I could hear. I couldn't walk down the hallway without running into walls. So, needless to say, I KNEW something was not right.
Ok. The appointment was made with a reknowned Neurosurgeon in Little Rock and my husband and I came to see him. He agreed that it was Chiari Malformation I (there are different stages) and that he recommended surgery and went over the risk associated with all surgeries and stated that he could not promise that all my symptoms would be gone, but that it should alleviate my migraines and I would be fine. Surgery date was set for October 5, 2010.
September, 2010 I had run out of vacation time, sick time and comp time at work. I had a decision to make and the only logical one was to resign due to medical problems because there was no way of knowing when or if I would be able to return. So I resigned. I also forgot to mention that I had started the slow, lengthy, drawn out process of filing for my disability (in July) after I realized that this whole situation was not going to be a quick and easy one to heal from. I am STILL waiting on an answer, by the way..........
Well, unable to pay the rent or our carpayment, we lost our vehicle and had to figure out where our family of five was going to live all while trying to wrap my mind around having brain surgery and processing the whirlwind that had become my life.
My mother and step father, (God love them!!!!) called and offered for us to move in with them. They live in Little Rock, surgery was set to be there and there was no way I was going to be able to travel much of anywhere after my surgery. It just made sense....so like the Beverly Hillbillies, without the money, we packed up our house, loaded the Uhaul and moved in with my mother. The saddest part of that whole thing, leaving our Harley dog with my best friend because we couldn't bring him with us....and of course, moving away from friends and my husband's family. This was all in the middle of September, 2010.......
October 5, 2010 rolls up and it is time for surgery. Please note that I am not a doctor, so all the medical jargin didn't make alot of sense to me so I am explaining it the way I had it explained to me....I was informed that I would have a strip of hair shaved off the back of my head where the incision would be made BUT that I would already be unconcious when that happened (whew....Right???), then they would make the incision, cut away a section of my skull and determine if they needed to expand the dura (lining around the brain) with either human donor or cow donor muscle, they would sew me back up and I would be in ICU for a few days, then a regular room and then home.....Sounds pretty simple, cut and dry?????
After the surgery, the surgeon goes out and talks to my multitude of family in the waiting room and tells them that the surgery went well, that he removed a section of my skull at the base of head and also the first vertabrea, but he didn't feel the need to cut into the dura because when he did the ultrasound on my brain, the blood flow was much better and he felt that was all that needed to be done. The next thing I remember is waking up in recovery, in severe pain and the nurses calling the doctor on the phone trying to figure out what he wanted to give me because my room was ready in ICU and they couldn't take me down with all the pain I was in. One of the nurses in Recovery kept telling me to take deep breaths...ok, really??? So I was trying to keep from crying and trying to breathe deep while the lady in the bed next to me was complaing that "she didn't want Morphine, she told them that before her elbow surgery".....I told the nurse to give it to me then!!!
FINALLY, my pain eased enough to move me to the ICU floor, I am sure the Recovery room nurses were relieved when that time came, but anyway.....I had family coming in two at a time to visit and trying not to cry because they knew I would cry too, I can be a big ole baby like that sometimes. I vividly remember my Daddy coming in to see me and he had tears in his eyes, my brother too. It was so good to see them there.....have to break for a minute, got a little emotional. Sorry.
....day two in ICU, I have a horrible migraine. Are you kidding me? This was the whole reason I had the surgery.
....day three I am move to a regular room, still hurting like all get out
....day four, same as day three.
....day five....I get to go home!!! Yippee!!!!
Life "Before" Chiari
Let me start off by saying that Chiari Malformation is a condition of the brain in which a cerebral tonsil at the back of the brain is down in the spinal canal causing the spinal fluid not to flow the way it should. Most adults who have this condition may not show any kind of signs until late teens or even on into adulthood, if ever. Some may actually live their life without ever knowing they have it. That is my "Reader's Digest" version (as my grandmother would say). It is a condition that is not widely known about and if you have it, you were born with it. You didn't just wake up one morning and it developed, so I guess my life never truly had a "before" Chiari.....hmmmm????
So, where do I start with MY story...???
I have had migraines for as long as I can remember, some worse than others, but they ALWAYS went away. Well, I am not a spring chicken. I am 39 years old, married to a wonderful man and I have 4 kids total. 2 sons and a daughter that are mine from previous relationships and an awesome step daughter.....ANYWAY, as I so easily get off track and I do appologize for that so bare with me please....
I had a wonderful job that I LOVED!!! I was a 911 dispatcher for the city we lived in. Well, I had started having pains in my neck and back and my arms had started drawing up with muscle spasms. This went on for a couple of days with back and forth visits to the doctor until he decided to have an xray done. After the xray, he sent me to a Neurologist that wanted an MRI done, so we set up the appointment, went for the test, you know the drill.....The Neurologist determined that I had a ruptured disc in my neck between C5 and C6. This all happened in June, 2010. Surgery was set up for my fusion to be done, about a 2-3 hour surgery according to the Neurosurgeon. I went in July, 2010 and had what ended up being a 5 hour surgery. The surgeon said that they had to put me in a harness, literally tug on me and realign my neck and back before they could do the surgery.....alrighty then!!!
About a month passes and I am STILL in alot of pain and having muscle spasms, more than I should be. So the Neurosurgeon sets me up for another xray, just to make sure the plates and screws in my neck haven't shifted. Well, lo and behold, when the images are sent via computer to him, he asks me if I have ever heard of Chiari Malformation? I, of course, told him "No". Now, I need to point out that MOST Chiari Malformations are found by MRI and not by xray or CT scan. My surgeon happened to know what he was looking at because he had actually seen it before. He was AWESOME!!! And then he started the process of referring me to a specialist.
***************************************************
Just to let you know, I will have to tell my story in intervals. I can't sit and stare at the computer for long periods of time. But I will get it caught up and to date soon.....
So, where do I start with MY story...???
I have had migraines for as long as I can remember, some worse than others, but they ALWAYS went away. Well, I am not a spring chicken. I am 39 years old, married to a wonderful man and I have 4 kids total. 2 sons and a daughter that are mine from previous relationships and an awesome step daughter.....ANYWAY, as I so easily get off track and I do appologize for that so bare with me please....
I had a wonderful job that I LOVED!!! I was a 911 dispatcher for the city we lived in. Well, I had started having pains in my neck and back and my arms had started drawing up with muscle spasms. This went on for a couple of days with back and forth visits to the doctor until he decided to have an xray done. After the xray, he sent me to a Neurologist that wanted an MRI done, so we set up the appointment, went for the test, you know the drill.....The Neurologist determined that I had a ruptured disc in my neck between C5 and C6. This all happened in June, 2010. Surgery was set up for my fusion to be done, about a 2-3 hour surgery according to the Neurosurgeon. I went in July, 2010 and had what ended up being a 5 hour surgery. The surgeon said that they had to put me in a harness, literally tug on me and realign my neck and back before they could do the surgery.....alrighty then!!!
About a month passes and I am STILL in alot of pain and having muscle spasms, more than I should be. So the Neurosurgeon sets me up for another xray, just to make sure the plates and screws in my neck haven't shifted. Well, lo and behold, when the images are sent via computer to him, he asks me if I have ever heard of Chiari Malformation? I, of course, told him "No". Now, I need to point out that MOST Chiari Malformations are found by MRI and not by xray or CT scan. My surgeon happened to know what he was looking at because he had actually seen it before. He was AWESOME!!! And then he started the process of referring me to a specialist.
***************************************************
Just to let you know, I will have to tell my story in intervals. I can't sit and stare at the computer for long periods of time. But I will get it caught up and to date soon.....
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