conflicting opinions equal doubts 2013

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conflicting opinions equal doubts 2013

Post by Admin on Sun Sep 15, 2013 8:00 am

2013 2013 2013 <span style="font-family: inherit;"><br /></span><span style="font-family: inherit;"><br /></span><span style="background-color: white; color: #333333; font-family: inherit; line-height: 17.999998092651367px;">After making the decision to have the surgery, I felt very good. &nbsp;I came across some great people that have gone thru the surgery and their outcome was really good. Like me, they are posivite, happy people. &nbsp; I felt very confident about my choice. &nbsp; <br /><br />Sunday, a few days later, I woke up feeling worse than every other day since the past 2 weeks. The past 2 weeks were really off for me. I didnt feel good, but really couldnt explain why. &nbsp;When i get tired, or a bit sick, my symptoms get so much worse. &nbsp; So that day, we came home from an outing and as I got out of the car, everything around me started spinning. It was a lot worse than the dizziness and vertigo I experience on a daily basic. &nbsp;I told Jay something was wrong and I think I should go to the ER. &nbsp;On the way there, something strong came over me, which now i believe was a petite mal seizure, and right at that time, my throat felt like it closed up and I couldnt breathe. &nbsp;I ended up being taken by ambulance to the hospital. In the ambulance, I felt my entire body go numb, then I couldnt move at all. &nbsp;It was pretty scary, but I kept as calm as I could, breathing with the help of oxygen. I had to work SO hard to just breathe. It was a lot of effort and will power. &nbsp; Long story short, I stayed in the hospital that night, the next day, and the night after that. &nbsp; I regained movement, but my legs and arms stayed weak &nbsp;and still are. Its getting better every day tho. &nbsp; &nbsp;I dont know what happened Sunday. &nbsp;When it first happened, I thought it was a bleed. I &nbsp;actually thought that I was dying! &nbsp;but only because i thought it was a bleed, or a stroke. &nbsp; It has not been confirmed to me yet what happened because the necessary tests to see what goes on deep into the brainstem were not taken. &nbsp; Its all very confusing. All I know, is that this happened to me. &nbsp; The next night, I had a lot of difficulty breathing too. &nbsp; I called Jay to come help me because the nurse just treated me like I was some anxiety attack person, even tho they heard me joke and be happy all day and commented on how upbeat and what a positive person I was, now i was just a anxiety &nbsp;freak? Anyway.. &nbsp; &nbsp; &nbsp;I ended up sleeping about 3 hours with some oxygen on and felt much better after some sleep. &nbsp; &nbsp;I came home that day. THat same night, again, trouble breathing when sleeping, and "something" would wake me up, but i coudlnt tell what. I just knew that "Something woke me up, and i was gasping for air some of those times. &nbsp; I leanred to focus so hard on the breathing not to cause any hyperventilation, which would make everything worse. &nbsp; I have been focusing to keep my breathing nice and slow , even tho it would be so much easier to breathe hard.... &nbsp; <br /><br />Then again last night, it was not as bad as Sunday, but worse than the 2 nights at the hospital. I just simply could not breathe if was laying down or sleeping. &nbsp;I also felt like I had to focus all my energy at just breathing.&nbsp;</span><br /><span style="font-family: inherit;"><span style="background-color: white; color: #333333; line-height: 17.999998092651367px;"><br /></span><span style="background-color: white; color: #333333; line-height: 17.999998092651367px;">So Today was so conflicting to me, and Jay. Around 4am, I woke up after about an hour of sleep, not being able to stay asleep because i just would gasp for air and whatever else would wake me up would. I later found out i do a lot of strong jerking, whatever that's from. Jay even took a video to show the Doctor. (no, i am not posting it haha) Anyway, we went to the ER, because i really felt that i</span><span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; line-height: 17.999998092651367px;">&nbsp;needed help. My throat feels like its closing, way at the top, where the swallow muscle is. I didnt even know it was all related until a friend who suffered the same thing told me it happened to her so severely that in the end, she could not swallow at all. The brain stem controls involuntary functions, i learned later.<br /><br />Anyway, i needed help breathing normally if only for me to sleep. I havent slept more than 30 mins at a time , maybe twice a night, since Saturday night. The exhaustion really makes all my symptoms worse, and the breathing made me have to focus all day long on a slow calm breathing to avoid hyperventilation and rise of blood pressure. Then, i couldnt eat more than one bite of food and was really dehydrated. Anyway, it was just a vicious cycle that maybe only one thing could stop. I have been waiting oxygen all week. It helped me so much when i was in the hospital. I never got it. So I never got the sleep and things got worse.<br /><br />When we got to the ER at UC this morning, i just wanted help. I didnt care about why i was there, or what my condition is, i just wanted help! Well, they focused so much on proving that my symptoms (breathing) were or were not from my condition, that they totally missed my point. Then, they proceeded to send in numerous medical student (neurology) and one by one telling us that my symptoms were not related to my condition, because my CT didnt show any signs of new bleeding AND on top of that, they didnt see how it ever bled. NOT what my first neurologist and the 2 neurosurgeons that told me this was inoperable told me! I really didnt care anymore , i just wanted help!<br /><br />I am now convinced that the lack of sleep truly made me deteriorate quickly this week. I would sleep a few minutes at a time on jay's chest in the ER room while he was standing infront of me and me sitting. It was easier to breathe that way and i got a little sleep, even a little helped a lot. I fell asleep for 10 mins and woke up to 2 more neurologist telling me that my breathing issues had nothing to do with my condition, not even the swallowing and other things i told them. They said it didnt match the location of my cavernoma in the brain stem. Now i knot they are not expert, even I know that the brain stem is so sensitive, that even a pin drop size drop of blood only viewable thru a angiogram (which i never had) can be seen, and that it doesnt even have to bleed to cause symptoms. Pressure can do that too.<br /><br />I felt so helpless and betrayed that these people didnt HELP me. They were there to prove their point that they believed my cavernoma was not creating me these problems, even after i told them i was there for HELP, not a diagnostic, like HELP me breathed and sleep, please! So, with the lack of sleep and stress, both Jay and I came out of there having such doubts about my upcoming surgery! I have to remind myself that i made the decision to have this done before Sunday's crisis. It really doesnt matter int he end what the real reasons are. ONce home, ALL my symptoms, the breathing, temporary paralysis i experience Sunday, swallowing problems, are all related to the brainstem. It was so bad last night that Jay was ready to put me on a flight to Phoenix right then.<br />Anyway, in the end i know it doesnt matter what these people said... If Dr.Spetzler didnt seem fit for me to have the surgery, or didn't think it was necessary, or that it was not worth the risks would never offer it with such confidence!! I am tired and the doubts these people put in me go as far as wondering if im not crazy. that's sad. haha Well you all know I am , but that's a different kind of crazy....</span></span><br> 2013 2013 2013 <br><span style="font-family: inherit;"><br /></span><span style="font-family: inherit;"><br /></span><span style="background-color: white; color: #333333; font-family: inherit; line-height: 17.999998092651367px;">After making the decision to have the surgery, I felt very good. &nbsp;I came across some great people that have gone thru the surgery and their outcome was really good. Like me, they are posivite, happy people. &nbsp; I felt very confident about my choice. &nbsp; <br /><br />Sunday, a few days later, I woke up feeling worse than every other day since the past 2 weeks. The past 2 weeks were really off for me. I didnt feel good, but really couldnt explain why. &nbsp;When i get tired, or a bit sick, my symptoms get so much worse. &nbsp; So that day, we came home from an outing and as I got out of the car, everything around me started spinning. It was a lot worse than the dizziness and vertigo I experience on a daily basic. &nbsp;I told Jay something was wrong and I think I should go to the ER. &nbsp;On the way there, something strong came over me, which now i believe was a petite mal seizure, and right at that time, my throat felt like it closed up and I couldnt breathe. &nbsp;I ended up being taken by ambulance to the hospital. In the ambulance, I felt my entire body go numb, then I couldnt move at all. &nbsp;It was pretty scary, but I kept as calm as I could, breathing with the help of oxygen. I had to work SO hard to just breathe. It was a lot of effort and will power. &nbsp; Long story short, I stayed in the hospital that night, the next day, and the night after that. &nbsp; I regained movement, but my legs and arms stayed weak &nbsp;and still are. Its getting better every day tho. &nbsp; &nbsp;I dont know what happened Sunday. &nbsp;When it first happened, I thought it was a bleed. I &nbsp;actually thought that I was dying! &nbsp;but only because i thought it was a bleed, or a stroke. &nbsp; It has not been confirmed to me yet what happened because the necessary tests to see what goes on deep into the brainstem were not taken. &nbsp; Its all very confusing. All I know, is that this happened to me. &nbsp; The next night, I had a lot of difficulty breathing too. &nbsp; I called Jay to come help me because the nurse just treated me like I was some anxiety attack person, even tho they heard me joke and be happy all day and commented on how upbeat and what a positive person I was, now i was just a anxiety &nbsp;freak? Anyway.. &nbsp; &nbsp; &nbsp;I ended up sleeping about 3 hours with some oxygen on and felt much better after some sleep. &nbsp; &nbsp;I came home that day. THat same night, again, trouble breathing when sleeping, and "something" would wake me up, but i coudlnt tell what. I just knew that "Something woke me up, and i was gasping for air some of those times. &nbsp; I leanred to focus so hard on the breathing not to cause any hyperventilation, which would make everything worse. &nbsp; I have been focusing to keep my breathing nice and slow , even tho it would be so much easier to breathe hard.... &nbsp; <br /><br />Then again last night, it was not as bad as Sunday, but worse than the 2 nights at the hospital. I just simply could not breathe if was laying down or sleeping. &nbsp;I also felt like I had to focus all my energy at just breathing.&nbsp;</span><br /><span style="font-family: inherit;"><span style="background-color: white; color: #333333; line-height: 17.999998092651367px;"><br /></span><span style="background-color: white; color: #333333; line-height: 17.999998092651367px;">So Today was so conflicting to me, and Jay. Around 4am, I woke up after about an hour of sleep, not being able to stay asleep because i just would gasp for air and whatever else would wake me up would. I later found out i do a lot of strong jerking, whatever that's from. Jay even took a video to show the Doctor. (no, i am not posting it haha) Anyway, we went to the ER, because i really felt that i</span><span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; line-height: 17.999998092651367px;">&nbsp;needed help. My throat feels like its closing, way at the top, where the swallow muscle is. I didnt even know it was all related until a friend who suffered the same thing told me it happened to her so severely that in the end, she could not swallow at all. The brain stem controls involuntary functions, i learned later.<br /><br />Anyway, i needed help breathing normally if only for me to sleep. I havent slept more than 30 mins at a time , maybe twice a night, since Saturday night. The exhaustion really makes all my symptoms worse, and the breathing made me have to focus all day long on a slow calm breathing to avoid hyperventilation and rise of blood pressure. Then, i couldnt eat more than one bite of food and was really dehydrated. Anyway, it was just a vicious cycle that maybe only one thing could stop. I have been waiting oxygen all week. It helped me so much when i was in the hospital. I never got it. So I never got the sleep and things got worse.<br /><br />When we got to the ER at UC this morning, i just wanted help. I didnt care about why i was there, or what my condition is, i just wanted help! Well, they focused so much on proving that my symptoms (breathing) were or were not from my condition, that they totally missed my point. Then, they proceeded to send in numerous medical student (neurology) and one by one telling us that my symptoms were not related to my condition, because my CT didnt show any signs of new bleeding AND on top of that, they didnt see how it ever bled. NOT what my first neurologist and the 2 neurosurgeons that told me this was inoperable told me! I really didnt care anymore , i just wanted help!<br /><br />I am now convinced that the lack of sleep truly made me deteriorate quickly this week. I would sleep a few minutes at a time on jay's chest in the ER room while he was standing infront of me and me sitting. It was easier to breathe that way and i got a little sleep, even a little helped a lot. I fell asleep for 10 mins and woke up to 2 more neurologist telling me that my breathing issues had nothing to do with my condition, not even the swallowing and other things i told them. They said it didnt match the location of my cavernoma in the brain stem. Now i knot they are not expert, even I know that the brain stem is so sensitive, that even a pin drop size drop of blood only viewable thru a angiogram (which i never had) can be seen, and that it doesnt even have to bleed to cause symptoms. Pressure can do that too.<br /><br />I felt so helpless and betrayed that these people didnt HELP me. They were there to prove their point that they believed my cavernoma was not creating me these problems, even after i told them i was there for HELP, not a diagnostic, like HELP me breathed and sleep, please! So, with the lack of sleep and stress, both Jay and I came out of there having such doubts about my upcoming surgery! I have to remind myself that i made the decision to have this done before Sunday's crisis. It really doesnt matter int he end what the real reasons are. ONce home, ALL my symptoms, the breathing, temporary paralysis i experience Sunday, swallowing problems, are all related to the brainstem. It was so bad last night that Jay was ready to put me on a flight to Phoenix right then.<br />Anyway, in the end i know it doesnt matter what these people said... If Dr.Spetzler didnt seem fit for me to have the surgery, or didn't think it was necessary, or that it was not worth the risks would never offer it with such confidence!! I am tired and the doubts these people put in me go as far as wondering if im not crazy. that's sad. haha Well you all know I am , but that's a different kind of crazy....</span></span><br>2013 2013 2013 <br> <a href="http://www.matrixar.com/" title="Matrix ">المصفوفة : أجمل الخلفيات والصور</a>

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