Friday, February 22, 2013

Conflicting opinions equal doubts

I wrote this after seeking some local answers. I updated in (parentheses) I apologise my writing was a little bit all over the place. I was tired and confused


After making the decision to have the surgery, I felt very good. I did not schedule yet... but to have the best neurosurgeon in the world call me and offer surgery... it has to be something I should do, especially after being told inoperable many times by other surgeons.    I came across some great people that have gone thru the surgery with Dr.Spetzler and their outcome was really good. Like me, they are positive, happy people.   I felt very confident about my choice. I know it is going to be a very long road to recovery... I know of all the deficits that may or may not happen... but I also know that my children would rather visit their mother in a nursing home, than in a graveyard... 


Sunday, 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.  When i get tired, or a bit sick, my symptoms get so much worse.   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.  The whole earth was shaking and spinning, and I was very confused.  I told Jay something was wrong and I think I should go to the ER.  On the way there, something strong came over me,    It felt like a huge electric shock all over my body and all over sudden i couldnt not move anything at all. I was glued to my seat and was useless, gasping for air.  (I later found out in Phoenix that it was blood dripping in the brainstem, because there was blood in the Pons when they reached the area) (what a CT later didnt show because it was tinny)     My husband stopped at a fire station for help. They got me in the ambulance to the local hospital in Anderson.  I was there 2 nights 3 days.  I had a CT done to rule in/out a stroke .It came back normal. I had a MRI the next day but not the one with and without contrast. I didnt get the "dye" one, so my MRI came back normal.  (When we called Dr.Spetzler Resident in Phoenix the day I was discharged, still struggling to breathe, they said only a MRi with AND without contrast would show a tiny bleed and even that sometimes does not show it.)  The Paramedic said I had petite mal seizures in the ambulance but I dont remember I think i was out. haha  This was NEVER mentionned while I was in the hospital... I was discharged from Mercy and told that my cavernoma was too small to cause my symptoms and it was just anxiety.  Anybody who knows me know I dont. I have been taking "Buproprion" which is for anxiety/depression simply because my Neuro said it was a good idea to keep my stress level to the minimum. I  have not noticed any change at all. I am just a natural "low stress" person. 

 
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.  I also felt like I had to focus all my energy at just breathing.  My oxygen level tested normal at the hospital, so i understand that they had no clue what was wrong with me.  I am having a lot of simple partial seizures. I had to stop my meds because I got a very bad allergic reaction to it.  I never had another type of seizure than simple partial and she left me the choice to try another medicine or not. I chose not too because the way it made me feel was worse than dealing with the seizures. If they were petite or grand mal I would. I just hope i dont get some big ass seizures now. I totally forgot to talk about the seizures and I dont know why it was never mentionned. My EEG came unconclusive when I had it down a few months ago. I had it done on a good day. haha On a "bad" day, I had those suckers every 10 mins.  I have them this often again... but i guess it shows "inconclusive" in my file. Its the petite mal that is odd to me... i hope it doesnt mean they are going to get worse and worse. 



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 needed help. I then noticed that I couldnt swallow,  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.



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 laying down in the cold on my porch because the wind helps me breathe in. haha I took Tylenol PM to help me sleep but that made the breathing even worse. ( I later found out that I just was having trouble with my involuntary function and I am a freak of nature to be alive. haha I have a strong mind, I suppose.  I cant explain how weird it feels to tell your body to breathe. It would come handy under water!! Yea!)



We decided to go to UC this time, because they are more Neurologists there.  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. The first Doctor we saw was a Resident. Too good looking to be a Doctor. My husband started with "Look, just please take us seriously, listen to us, just listen" hahaha  He did listen, and he was very nice.  I was SO exhausted after not sleeping for 3 days straight I kept falling asleep in the chair and waking up by jerking.  After the Grey's anatomy Dr. Listened, he left and another one came in.  We did a  lot of waiting, and I did a lot of sleeping for 1 min a time/jerking/waking up. The first Neurosurgeon we saw didnt listen at all. He already had his mind up that my Scans were clear and i must be a anxiety freak. He was probably running low on fume too.  He told 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 didn't care anymore , I just wanted help!  I even asked that if anxiety cause this, Please give me a shot or something to calm my darn nerve down. I was not aware I was anxious but hey they kept saying I was... 



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.  I am so confused, because Dr.Spetzler team are telling us on the phone that the brainstem does control involuntary functions, like breathing and swallowing, and it does not need much blood to cause damage. 





Jay  (Front) and I (Back) asking Neuros to help. 
The neurosurgeon stood an inch from my husband face and told him , angrily "If her brainstem had a bleed, she would be dead!"  and there I was behind him awake for now the 4th day because I stopped breathing in my sleep.  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 breathe and sleep, please! So, and Please please beleive me that I do not have anxiety!   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.

We called my Neurosurgeon Dr. Andaluz and he did confirm that I had 2 bleeds before!  I knew I heard right!  But the Doctors at UC told me it never did.  I know that these local doctors really do their best and they deal with so many people that do have anxiety.  At least the good looking one (gosh i dont remember his name) Never told me I was a freak. He didnt seem to know, and i respect that so much more.  We have been on the phone with Dr.Spetzer office and his resident (who call on his behalf)  and its very odd feeling to have the best Neurosurgeon call me to tell me he wants to do the surgery as soon as possible.  



In the end i know it doesnt matter what the Neurologists here said...Its a rare condition and to them its impossible that I can be walking and alive after 3 brainstem bleeds.  I knew I didnt have anxiety, that i was not crazy, but trust me, I think I am now . haha


Update: Surgery is scheduled for March 1.  We are leaving Sunday. Driving. We are taking our time because I am a mess. I just hope the trip doesnt kill me. That would be a joke right!  Pre Op is Feb. 28 :)  

1 comment:

  1. Aww yes you certainly had a rough week. I know how stressful all of this must be for you and I know that its so hard to get to that place of complete peace with your decision but I do think you are doing the right thing. I will miss you teribly and I wish we could put this off for just a bit longer but I do believe having this operation done while you are still healthy is very important and I do believe you will recover swiftly! I love you my friend...

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