Sunday, February 23, 2014

It is never to late to spread your wings!!

You all have heard me say it often... when i first started to write in this blog, I had just been diagnosed with a Cavernous Malformation in the brain.  I never heard of it, did not know what it was, and even my first few post are a bit all over the place as I shared what i would find.  The first neurosurgeon I saw, told me inoperable. As hard as it was to swallow, I accepted that. It's a specialist of the brain, after all, he's got to know what he is talking about.  I didn't really put much thoughts into the importance of finding the best neurosurgeon for one's condition. I mean, I didn't even know what to think! I assume he was right.

As time went by, you  followed my journey from accepting all the changes, since I was going to live like this, to struggling with symptoms, to feeling better, to have a medical emergency, to being told my symptoms were not even related, to agonizing over having the risky surgery, or not to have the surgery, to even accepting death the best I could, to scheduling the surgery, to recovering after surgery, to now finding my new normal.   

I was still in the Rehabilitation center when I started to really focus on reaching out to people. I HAD to!!  If I could do anything to help  even one person to find Dr.Spetzler, or to bring hope, surgery or not, or to encourage people to truly take their own health plan/future into their own hand, i was going to do that!!  The best I could anyway.   

I want to share with you exactly WHY I do what I do, even when I think my words can't go anywhere. Its in the hope that someday, I read something like this:

Hi everyone I just want to say a big thank you to everyone, since joining these support groups I've read stories from members that have made me cry, made me laugh, kept me from going insane, and filled me with inspiration and hope,..... After being diagnosed 8 year ago with an inoperable brainstem cavernoma(called buster) that was bleeding, life has been very strange to say the least, inoperable is a nasty word it makes you live in fear and almost give up hope of some kind of future, I spent the first year recovering from the bleed and trying to come to terms with what I had and that I would always have it there causing me problems and living in fear of the unknown praying it wouldn't bleed again and cause a fatal stroke or worse, but I guess I kind of accepted inoperable because the fear of brain surgery was terrifying for me, you see, my mum died 30 years ago when I was 9 at the age of 42 after having brain surgery on a ruptured aneurysm, so I could deal with inoperable then......HOWEVER, now, 8 years later i've learnt so much more about cavernomas thanks to CAUK and other support groups and the many people I now know with the same condition and after having so many health problems thrown my way for the last few years, i've decided that inoperable is just not good enough anymore I'm sick of living in fear and I want my life thank you all for your support and your inspirational stories of the journeys you have also travelled and thanks to the advancement in brain surgery skills it seems the INOPERABLE are now becoming OPERABLE....... brainstem surgery used to be a big no no due to the risks but I've read so many cavernoma patient stories lately from people who have had the surgery and with amazing results that I've decided it's time to fight for my diagnosis of OPERABLE!!!!! I wish you all luck and the best possible outcomes in your continued journeys💞💞

This is from a strong and wonderful, gorgeous, kind hearted, upbeat, strong and positive woman called Jane. Love you Jane!! <3 Thanks for letting me share this with everyone :)

She wrote this on the Facebook Cavernoma Support Group.  I am so excited for her to start this whole new chapter of her life. I am thrilled that these support groups are finally thriving and getting new members by the day.  

If you all remember
Akiva, the first person I ever found that had successfully gone thru the surgery and gained back a pretty good quality of life, we teamed up and now have a Facebook Brainstem Surgery Survivors Group. There are 21 of us that either went thru with the surgery with good results, spouses of the ones who did, and 6 members that are either having surgery in the next few weeks/months, or eagerly searching for the best surgeons.  The power of social media is phenomenal, and it is helping a lot of people who otherwise would just think there is no hope for them!!   I NEVER want for anybody to look for a group of support that they can't find. I NEVER want for anybody to ever feel helpless and alone!!  

Thursday, February 20, 2014

My Successful "Inoperable" Brainstem surgery (by Dr.Robert Spetzler)

Note: This is my personal experience. I had surgery done by Dr.Robert Spetzler, in Phoenix Arizona, 2000 miles away  from home. My Cavernoma had previously bled 3 times and was located in the right pons, in the brainstem.  I recovered from the first 2 brain bleeds fairly well. I had surgery following the third, which slightly affected my involuntary functions such as breathing and swallowing. I was told locally that these symptoms could not be related to my condition because if they were, i would be dead :)  I was originally told my cavernoma  was closer to the thalamus by the first surgeon who told me it was inoperable. I also had another single abnormal blood vessels, called a DVA, very close by,  that complicated things and made the resection a little more difficult than usual.  Dr.Spetzler "used his magic" was the assistant words. I was originally told it was another cavernoma, or a AVM.  A beautiful little girl died years ago when Dr.Spetzler removed that vessels. The surgery was successful but she  died of a stroke on Day 2, the extra blood vessels actually becoming essential to the brain.  Her death saved the lives of many others after her. 

My hospital bag turned out to be perfect.
 I packed Shampoo/Condionner, my favorite
Gel soap, body lotion that smells divine, a robe,
slippers with anti slip bottom, razor,
loose fitting clothes, underwear, socks,
toothbrush/paste, makeup,
laptop, phone/chargers.

Getting to know more and more  people who find their way into finding a neurosurgeon to perform the surgery for them, I have had a lot of people ask me more details on the Brainstem Surgery/Recovery.  Most of us, Brainstem Cavernous Malformation patients, are very much aware of what the recovery is about.  We have read a lot of stories, and in the big scheme of things, we know.  When i first found out I needed brain surgery, before understanding the locations of the brain and  told it was inoperable, i came across a lovely young woman who described in detail her brain surgery, on the temporal lobe, and the recovery. It was no fun, but she was ok. She was home after a few days and work in 6 weeks. I was satisfied.

Then i learned my location was "inoperable" and WHEN operated on, oh all the horror stories I read... might as well be... dead!

Having brainstem surgery  that you thought was impossible, start with having one goal: SURVIVE. Survive long enough to get the surgery , and survive the surgery itself. So, that said, the first few hours, days, after waking up from the surgery, are as surreal  as it was when first finding out you had a bomb in your head and a death sentence.   I was never specific on details because as soon as i was awake and well, what was there to complain about! haha , the first few days after my surgery and all that I was dealing with are  unknown, simply because by that point. everybody is rejoicing big times and all those limitations/deficits, seems very little compared to loss of life, so when asked "How is Lisanne doing?" its "Oh everything is great!!! "   I was alive and ready to get my life back, despite the present condition.  Its about looking forward.

When Jay posted that my surgery went as planned, and I was in recovery, there was not one friend or family member that was not rejoicing plenty, no details needed!   After going thru something like this, it didn't matter if I could talk, move, or anything. I was alive, and it went as planned. hahaha   I was ready for this surgery. I knew and was prepared for all the things I am about to mention.  Feeling such happiness and relief, I didn't even think of writing about all those little things that are quite intense the first few days after you wake up.  Simply because they are not important. I was going to see my kids grow up! But I realise that because I was ready to cope with anything thrown my way, it can be helpful to others to know!  So I will try my best to be as specific, assuming this is the first time you read about those things.

 I want to be as honest as possible, and please notice that there is not one once of negativity in my mood right now. When talking about this, I am not telling you how "bad" it was. I am simply telling how IT was.  

My experience was at the Barrow Neurological Institute, surgery by Dr. Robert Spetzler. I do not know how other centers get their patients prepared for craniotomies, but this is my experience.

I will start with the Pre-Op .   It was the day before the surgery.  I had a blood test done, an MRI and a lot of waiting. haha I saw Dr.Zaidi, Dr.Spetzler assistant and he talked with us about 10 min. Dr.Spetzler was running an hour late and only had about 5 min to give us because there was an emergency. Totally fine with me. I was there from 9am to 4pm simply because my MRI  was scheduled after I saw the Dr. They usually do it first.  They were incredible at accommodating us because we were from so far away.

The morning of the surgery:    One of the thing that was agonizing for me after I chose to have the surgery, was that I needed complete peace. I didn't want to be afraid, or sad, while getting ready for surgery, and I was traumatized at the idea of being wheeled off to the OR in fear. I needed peace!!  I did have peace. I begged over and over for prayers in that matter.  I knew that I took the right decision, but laying my "normal" self on a table , in order to wake up disabled, just to "live", was heavy.  However, I did have that peace on the morning of March 1st, being prepped for my 9am surgery.   You are about to laugh. The thing i was so afraid of... picturing myself being taken away to the Operating Room, each second knowing it might be my last, didn't even happen. hahaha  Around 8:50, the anesthesiologist came into the pre-op room, and told me "I am just going to give you something to relax you".  That's the last thing I remember. No saying goodbyes to my husband, No tears, No fears.  Next thing I know: I am awake after surgery. haha

During surgery, the hospital gave my husband a pager. It looked just like the big pager they give you at some restaurant while you wait for your seat to be ready. This pager sent him "text". He was told they would come every hour or so, and that they would also come out once in a while to update him. The pager would sent out small message you to update him on what stage the surgery was.  For example, my surgery was scheduled for 9 am, but when the pager went off the first time, at 10:40, it said "Surgery has begun". It was about 1 Hour and a half from me being moved to the OR, to the surgery actually beginning. I will talk about that in a bit.   The pager went off a few times with the "Surgery in progress" a few times.  A nurse came out to update of the major steps like "They opened her up now" Or Dr.Spetzler is doing the resection now" or "The other Dr took over now that Dr.Spetzler is done his part"  In the mean time, the pager would go off at those specific times with quick info like "Dr.Spetzler is finishing", "Patient is being closed", and "Patient is being moved to Recovery".  The nurse that would come out once in a while basically  said in a bit more detail what the pager indicated.

The reason that the surgery take 1:30 to actually start, is all the preparation needed for it to be as safe as possible. Craniotomy patients have to be immobilised  perfectly to avoid any undesirable movement. Each mm count, so just imagine now if something happened and the patient moved, even the slightest.  It takes them times to place all the electrodes that connects our vital organs to machine to be read, brain wave and all that good stuff.

They also have to drill 3 holes in our skull in order to place our head in a special frame to insure that our head will not move at all during surgery. This is called the Mayfield Clamp.   Depending of the location of your incision, these are the most common position that you will be immobilised for the surgery.  Mine was position C. You are also going to be strapped down. However, you will never be aware of this! 

The patient's head is placed in a three-pin Mayfield skull clamp. The clamp attaches to the operative table and holds the head absolutely still during delicate brain surgery. 
You can see the scar on my forehead. 

You are also going to be fully intubated.  A breathing tube.  Most people are not aware of this.  It is very common for a Neurosurgeon to not remove the breathing tube after the Brainstem surgery. It is not rare for a  patient to wake up with the breathing tube still in place. This does not mean that the person cannot survive on breathing on their own, it simply means that the Doctor judged for it to be safer to keep it. It is usually removed quickly!   I didn't have mine in place when I woke up. I was actually expecting to have one once I wake up because breathing had been such a workout in the end.  I remember it being very painful and hard to breathe, but the body knows how to fight! It was a blessing in the end, because most patients that wake up with a breathing tube still in place cannot talk.  It is so important to remember that this is just an effect of the breathing tube, and not the inability to physically talk! The throat gets very irritated after a breathing tube has been a place.

Here is an idea of what the OR looks like. Don't you like the "Air drill gas tank" in the front? haha

In the recovery room, Jay was able to see me just for a few minutes. His words are "You looked really horrible, terrible. I was shocked"  I didn't ask for details on that. Hahaha What I do remember, is being totally aware of my surrounding. I knew right away where I was and what has had happened. I couldn't verbalise it, but I felt very serene.  I felt it was very hard to breathe. I know that my breathing was labored, but I am thankful that Dr.Spetzler knew that I could and didn't leave me with a breathing tube.  But I also know that If i woke up with one, I wouldn't not of been alarmed because I knew it was a possibility.  Then I remember feeling pain. This is very vague for me. I remember shaking a lot, yet not being able to feel my entire body, or move it. I remember "trying" to think but not being very good at it. haha  After Jay saw the terribly looking me in the recovery room, I remember drifting back into a black pit after i said "hurt". They knock me out. Like a coma. So you dont feel the pain.  They were good! haha  I was then taken to have a Post Op MRI .  Dr.Spetzler always does a  post op MRI in case he needs to take you back in the  OR, which if need be, would do immediately.  It is very rare, but it does happen.  The second time I woke up after surgery, was in the MRI Machine. This to me,  is the worse I had to endure during this whole journey. I think its because its the first time I was truly mentally aware of what had just happened and could fully feel it.  It must not have been more than 20 min since waking up in recovery.  The feeling of being numb from head to toe and not being to move anything. I remember trying to wiggle my toes, move my fingers.  Its feeling this way in, in pain, shaking, inside that white box.  Its in the MRI that I realized that I couldn't move. I assumed I was not a paraplegic, and believe it or not, accepted it.  I wanted to be near my husband. I wanted to "rest", as if being asleep for hours and hours was not enough. hahaha However,  I was not afraid. Not even one second. I cant really explain why.  I remember seeing a lot of people with very serious looks on their faces, talking, looking at me. I remember a lady come to me, and feeling my eyes heavy and close again. I guess they saw that I needed to be knocked out again.   

The third time I woke up, is my favorite time :)  Jay was next to me. I was in my ICU room.  This is a picture of my room while Jay was waiting for me to be done the MRI.  I remember feeling SO happy to be there.  I felt complete!   I don't remember if i said anything before I turned towards Jay and said "Spinach".  

"Spinach" used to be Jay and I "secret" word for "i love you."   Jay and I were friends for a very long time before we were together as lovers.  However, even tho we had nothing to hide, we came up with the word "Spinach", that we would tell each other here and here, on the phone, or in front of people.   For me, using that word was the best way to show him that I was still "all" there. That I not only remembered the past (as we used that words over 10 years ago), but i was still intelligent. Well I am right? 

After that 3 or 4 days,  I remember laughing and cracking jokes, but i don't remember what I said. I laughed so much, every day. Everything was like a good dream despite how I personally felt. We were happy. Focusing on the positive future only.   I was just so happy despite all my limitations, despite being glued to that bed and not being able to move.  I became more aware of those limitations on day 2. I may not remember what was going on around me, but I had plenty of time to notice my limitations. That's how i always saw them. I never considered myself disabled or handicapped.   The first obvious one once I became more and more awake was the fact that I didn't see from the left eye. I didn't know if i was blind from it, if it was damaged, etc First thing I was told is that it was swollen shut because of the way I was laying down for the surgery for so long.   I had some cotton on it.  My right eye was very weak. I could barely see out of it. Its only once my left eye was able to open the next morning that we realised that I had double/triple vision. I was told that my optic nerve was paralyzed.  I also had extreme vertigo, among several other things that i will go over in a little bit. . Nothing can explain the craziness of this "out of this world" feeling (i call it twilight zone)  It is completely disabling.

Jay was able to stay with me 24/7. If you notice in the photo, the ICU has as folding bed/couch.   This is what it looks like as a bed. 

(My husband works from home and we were tremendously blessed that he was able to work from 2000 miles away. That enabled him to be with me at all time. It was just him and I in Arizona, 2000 miles away from home in Ohio. I did not see my children for One full month. I was able to go home after I passed my "tests" to leave inpatient rehab to go continue outpatient rehab at home in Cincinnati. )

He even brought his pillow and blanket from home :)  He had his laptop, and he was right behind me.  When I couldn't see him, I could hear him. I often woke up (You drift in and out of sleep a LOT) and i couldn't see him, but I could hear him and he was right there, behind me. It was very comforting. :)

I started to be able to move my arms up and down shortly after.  I couldn't feel them, but i could move them. This felt so liberating!!  The evening of the surgery is so vague to me, but I do remember this photo being taken.  What this picture doesn't show, is that it was extremely difficult to eat on my own. I actually couldn't do it. I tried... but Jay ended up feeding me. This was my second Rasberry Sorbet. :)  I did insist at holding it the best I could. I had all my "head", but couldnt express how I felt. But I did smile with all my heart.


The bed is slightly inclined.   I could not take the food and put it in my mouth. I look like I am showing off my skills there, but I am actually trying to eat it and i couldn't find my mouth. I found my eye instead. haha  For days, I couldn't guide the food to my mouth IF I managed to keep it on the fork long enough. haha Some people ability to swallow is damaged  by the time they have surgery. It felt weird for me to swallow, and the week before my surgery, I mentioned it to my local neurologists when I was in the hospital. They told me it was not related. Ah! 

I am very blessed to have had the surgery shortly after this symptoms started. Some people had to have a feeding tube in place until they learned how to swallow again.   Notice also the spot on my forehead where the Mayfield clamp was in.  I remember it being sore.  

Another moment, is when I just got to the ICU, Jay asked me if i could give him a thumbs up.   I thought I did. I really thought I did, but i guess I had my fingers all wired wrong... because that looks like I was trying to give the middle finger instead. For the record, I only gave the finger one time in my entire life. Yes... it was to a bad driver, I admit it... haha   I promise you I thought i was giving a thumbs up.

This next one is a picture of my incision.  Its "thick" at the bottom, because this is where the skin was stretched out.

Well this pretty much sums up Day 1 of Brainstem surgery!  My memory is so bad from March 1st to about March 3rd.  My surgery was on a Friday. For months and months, I always thought It was Friday when I woke up in the morning. I just recently am better at knowing what time of the week, and year it is.  I had the seasons all wrong too.  haha

Here is a list of the limitations you can expect upon waking up from brainstem surgery. These are personal, everyone is different. It is a long list, but  nothing compared to people who have had this surgery as an emergency performed by a surgeon that would not have done it otherwise. I was told by my neurologists here in Ohio that I would be a vegetable if i ever made it out alive.

This list is about the physical side of things.  I became aware of the  mental limitations later, as the first few days are so intense physically.  My intend is to HELP you, not scare you.   There is nothing more helpful than to know what to expect, and what is normal to experience . Knowledge is power is my line when it comes to my experience with this. About the pain. I "remember" it was very intense, but I don't actually "remember" the pain. I think the body is great at "forgetting" this sort of things.  Like a mother who wants to have another baby. hahaha

I was given Dilaudid for pain. I was told that It is stronger than Morphine. Morphine does not work the best for this. Be aware that you can ask for Dilaudid. I received it first thing because I am allergic to Morphine. If Dilaudid only took the worse away for me for less than an hour, I cant imagine how little Morphine can do!

The first 15 mins. (Recovery room)
  • My FIRST thought was "This is just so so wonderful~! and this incredible feeling of peace and pure joy. 
  • Feeling "out of this world"
  • Being fully aware of how lucky i was to not be on breathing tube or feeding tube :)
  • I was alert enough to know i have not been in a coma because of what was goin on around me, even if I didnt see. 
  • I feel like a prisoner in my own body. I cant move or communicate, but I am "there". 
  • Labored breathing. I want to express that I need help breathing, but I cant. 
  • Overwhelmed with intense "abnormal"feelings as my body is pushed awake
  • Head pain
  • Neck pain
  • Head is totally numb
  • Asking for my husband, but no sounds coming out.
  • Shaking uncontrollably. A combination of the pain, feeling extremely cold and coming out of anesthesia.
  • Fighting hard to be awake, i want to go back to sleep. haha
  • Totally aware I must be in recovery room
  • Cannot move at all, not even my head. Completely immobile. 
  • Cannot talk
  • Cannot open my eyes
  • Hard to keep my mouth close: little control of my jaw
  • Seeing and falling into a black hole often. 
  • I feel like im in a hole, way at the bottom of a tunel and people are very far away. 

Hour 1(?)-2 (I do not know how long i was in recovery before Jay could come see me) (Sill in recovery room)
  • Feeling like being forced awake again
  • Incredible feeling of being spinned around
  • Very painful to breathe, now wondering why they made me breathe on my own as I realise it was intentional on their part. 
  • Fighting to breathe made me very tired. Lots of efforts. 
  • Hearing Jay's voice. Feeling so happy. I want to see him and I want him to touch me. 
  • Feeling loss as I didn't feel him touch me. (completely numb to any touch)
  • Not being able to see but his shadow
  • Shaking uncontrollably
  • Intense Head pain
  • Jaw pain,still hard to keep it closed
  • Insane dry mouth/throat, consistent of the recent presence of breathing tube. (normal for ANY surgery!)
  • Very poor hearing, tunnel like.
  • Head feels very very "full"
  • Ears feel very full
  • Distorted hearing
  • Distorted vision, very foggy, weird
  • Ringing in my head. I though it was a machine.
  • Trying to express my discomfort. 
  •  Fell into a black hole again. :) I don't know if the "black hole" is being medicated or just coming in and out of consciousness. It always came at very intense time when i couldn't express myself. 
  • Waking up in very loud, bright MRI machine. 
  • Entire body feels totally numb. I could of been "skinned" alive and not feel it. 
  • Uncontrollable shaking. 
  • Tingly jaw and lips, felt like bugs
  • Couldn't move my entire body. In the MRI machine, I though that I was paralysed, but at the same time it didn't worry me. I was very hopeful this was only temporary, no matter how long.  Not feeling my body and not being to move it feels very very heavy. I will never forget how it feels. 
  • The most head pain ever experienced for me. Felt like my head was on fire, being smashed and stabbed all at once. haha Nice! MRI did that to me prior to surgery too, this was just more intense.. 
  • Aware of some slight commotion. I think i was shaking too much for the MRI to take place. 
  • Happy to see that black hole and jump into it for some good sleep :)

    Hour 2-4 (ICU)

  • Waking up very comfortably. Felt like Heaven
  • Finally aware of my husband presence
  • feeling such peace, warmth and happiness
  • aware that i cant see from one eye
  • Distorted vision
  • Tunnel vision
  • Extreme dizziness, vertigo. Any head movement with extreme nausea
  • Light headed is an understatement
  • Trying to move my hands and fingers. I cant feel them at all, but i can now move them a little. However, they wont "listen" to me.  
  • In and out of sleep constantly
  • Kept sedated most of the time, awake time being of about 5-15 mins. 

Hour 4 (around 10 at night) to morning of day 2 (ICU)

  • I could now move my arms up and down some. 
  • Very disoriented on time. night/day confusion
  • Hearing is the same
  • More aware of physical limitations.  Struggling with fear and uncertainty of the future and quality of life. 
  • Very thirsty constantly
  • Unable to use my hands to pick up objects, pull blankets etc. NO coordination or strength.
  • Sharp "hot blade" like pain at cavernoma location, exactly where it was, but so very localized, easier to manage
  • I could feel the cavernoma  GONE.  Totally felt the empty spot.
  • A lot of pressure in my eyes, neck, ears
  • Ears feel like they will pop, and not gently. 
  • Allergic reaction to medicine (Diladid)(I was already allergic to Morphine)
  • Short of breath
  • Still cannot feel or move waist down. Still cant feel arms but I can move them slightly. 
  • I can talk, all over sudden, i am a talking machine. 
  • Given sorbets
  • I can hear  my husband and nurses, but rarely make sense of it i feel too tired. 
  • my husband/voice presence is a enormous release. I wish i could "feel" him. This was very hard. I realized that paralyzed people cannot feel you when you hug them. Its a very hard thing to accept. 
  • Uneventful night. 
  • Waking up with pain, but nothing like the first hours. 
  • Given pain medication instantly and back to awesome sleep. 
Day 2 (First day after surgery)
  • I just want to sleep so not to deal with what is going on. 
  • I am Serene, in peace. Despite how i feel. I was ready and I am not shocked. 
  • Left eye gauze removed. Double vision very intense.
  • Vertigo , room, people and object spin uncontrollably
  • Body still numb, but face is no longer tingly, its itchy! 
  • Allergic reaction. Given the choice to deal with the itchiness or the pain. Chose itchiness baby! 
  • I was asked if i could try to sit. 
  • This is one of the hardest thing I ever done. The vertigo , nausea, disorientation, not feeling my body, zero strength. But I insisted to DO it. 
  • Jay carried me and made a nurse mad. haha 
  • Catheter still in place. I prefer it in place than a bed pan. 
  • Day is spent talking, sleeping, laughing, and sleeping some more.
  • In and out of sleep a lot.
  • Pain under control thru IV : 
    • Chose to keep Dilaudid and deal with the allergic reaction instead of feeling full blown pain.   
    • Had a patch behind my ear to tone down Nausea.
    • I did not need Steroids. This is given very often after brain surgery. I am very lucky. I did not have any swelling and my vitals were always perfect. 
  • Breathing just fine. 
  • My perception of depth/distance is way off. 
  • VERY Restful sleep

Day 3-4
March 3rd, just out of ICU
  • Move to Regular room
  • Catether removed
  • Now fully aware of my severe limitation and dependence. 
  • I have lost my taste. I cannot taste food. (Yes, it came back about 3 weeks later and all back within 4 months.)
  • Trying to get on my laptop, i realise i cant see enough, and TOTALLY forgot where the letters are on the Keyboard. I also do not remember how to count and do simple tasks. Like I have never learned them before. 
  • Still receiving IV med, but i asked for lower doses, not wanting to be dependant on them and be aware of my pain better
  • I can move my arms a lot better, but not my legs.  Still cant feel my arms my entire body.
  • Still very itchy from the medication, which was surreal because I could feel the itch, but not the scratching, so no relief.   I have fun using my hands to place my legs a bunch of odd ways and they stay whichever way i put them. I had fun with that. 
  • Still unable to move by  myself. Have to be transported to and from wheelchair. 
  • Cant push wheelchair yet.
  • Completely dependent of others for everything. 
  • I was made to stand and "walk" using a special frame. I was able to take a few step despite not being able to feel my legs or move them or the floor. 
  • Allowed to wash my hair. I discovered the agony of Hot water, and the heaven of COLD water.
  • Jay is my personal icepack maker by the hour. So thankful for him. (Its an icepack underneath my head)
  • Restful sleeps. I lost my involuntary function before the surgery. I would stop breathing in my sleep. I was completely exhausted. This is the best sleep I have had in a LONG time. I sleep 12 hours every night, waking up about twice. 
Over all Care/Details:

I know that there are lots to wonder about. Please feel free to leave me your questions if i miss something, but here are three answers to question I  wish I found more specific answers to when i was getting ready.  Do know that I am doing this for you, as i rather not talk about these things. I am nice like that. They are  Restroom, Hygiene and Eating.

How do you use the restroom when you cant move?

You dont :)    

#1: I had a catheter in place, which believe me, is a blessing, as weird as it feels to have this inside of you.  You dont even feel the need to pee, but you do have this bag of urine at the foot of your bed for everyone to admire.  :)
#2: Believe me baby, you CANT go to the bathroom, and you wont poop your pants.  You will not see a potty for about 3 days.  Rejoice, because you have 3 days to hopefully be able to function enough to wipe your own ass.

If by the time your intestine works, or you are a female and have a special visitor in town for a few days, and still too immobile to take care of your tooshie, what happens then?

The way it worked for me, is that I totally broke the law. I am on probation for it. Teehee... nah, but I still broke the rule. (Shhhhh) By the time I needed #2 and I had a visitor show up that same day (Joy oh Joy!) I was completely dependant to move from one place to another. BUT once inside the restroom, I was able to drag, crawl, do everything I could to NOT have anybody take care  of me that way. I was desperately trying to avoid that. So much so that I truly believe I found some strength and ability I didn't know I had.  Haha  I got caught one day and the nurse got VERY mad at me... and i mean VERY mad.  I could "kill myself" she said. I am not encouraging you to do that. I did not try to walk, I used my arms to drag myself. I did some pretty cool acrobatics in there.  I am proud of myself.  I KNEW I would be ok. Believe me, I would not have done this if I knew I couldn't.  Did it pay off? Oh yea! Dignity intact!

What about shower?

Ah, that one. No more dignity there.  If you are absolutely terrified to be seen naked by a stranger, get over it. Now. I mean it.  If you compare it to someone wiping your ass or taking care of your monthly visitor, to being washed by someone, You will be VERY thankful you are "just" getting naked.   I don't get naked easy (that sound weird) so it WAS a big deal for me, but I got over it pretty quick.  Also, put yourself in their shoes...if you were given someone a shower, you would not be going to bed remembering what they look like naked. I don't think you would anyway!

Shower chair

If you are like me and cant stand for a while, you will be sitting on a special chair. There also are a lot of rails to hold on to. Its actually harder to fall than you think because there is a lot to hold on to, and the shower floor is rough. The real danger is AFTER the shower as the regular floors get wet.

The nurse asked me if I could use my hands to wash myself. I said I could. I dropped the wash cloth a lot but insisted, and she was kind and patient.

After that one shower, I asked if it was possible that my husband helps me instead of a nurse. She said "of course!", so after that, Jay helped me in, and stood there to make sure I didn't fall, then helped out.  I always managed to wash myself.  I washed my hair in the bathroom sink, while sitting in my wheelchair. You get to really love your wheelchair.

However, to be discharged of Inpatient rehab, if you do need it, you will have to prove them that you can do these tasks by yourself. You have to take a shower in front of a therapist, wash, shave, dress yourself, to show that you are a big girl/boy. I talked the whole time to keep my mind off it.

Enough about being naked. EAT, How about eating?

Day 2 evening is when I ate something. While sitting in that chair. I couldn't open my eyes. It was too debilitating and harsh. Jay fed me while I had my eyes closed. I don't remember it being a lot, but I was not hungry and still ate it all. It was a chicken stew and some veggies.

Some people will lose the ability to swallow at first and need a feeding tube for a bit. Once the feeding tube is out, they are on a special diet of thick liquid. I  had to chew quite some time to swallow but i could eat normally. 

On March 5th, I was transferred to the Neurological Rehabilitation Center where I re-learn how to use my body the way it is intended to learn how to walk, do basic task like cook, get dressed, shower and all that sort of things.  You can read about my experience here.!! Everyday is a mix of realisation of new limitations, and some others getting better.

Being prepared, take the day as it comes, and stay positive day by day, will be a tremendous blessing.  Laugh. A lot.  Sleep. A lot. SO:

SMILE.SLEEP.LAUGH and repeat. 

Tuesday, February 18, 2014

Go, and Learn!

I posted this in the Facebook Cavernoma Support Group:

I just want to remind everyone that it is so very important to learn as much as we can about our condition. Most of our local Neurologist/Neurosurgeons dont know much at all, as nice and full of good intentions they can be. It is so important to be pro-active and truly believe that there ARE answers!

One Year ago today, I was discharged from my local hospital after a third bleed that a regular CT didnt show, being told that not only my symptoms were not related, but that there was nothing do to anyway. I was told my symptoms "could not" be related, because if my condition caused these, I would be dead. Hahaha I was there infront of him, couldnt walk, could barely talk, could barely breathe, begging for help, but was not getting it because "if they were related, I would be dead..." I was even told that my symptoms were anxiety!! For you who know me, you are laughing with me. During that time, we were on the phone every day with Dr.Spetzler assistant, being told that my symptoms were exactly of my condition and suggesting surgery. The surgery was scheduled without even being ever seen in person, just by trusting who we were told was the best in the world for my condition. Even Neurologists/Neurosurgeons here at UC told us this was ridiculous, calling Dr.Spetzler a "clown who operates a drive thru " Oh the doubts!! But deep down, we knew that HE knew, and they didnt. Two days later, we were on our way to Phoenix Arizona. We arrived February 27th. I had my pre op the day of my birthday, February 28th. I would say that my "real" birthday is 2 days long now, since surgery was March 1st and it is as if I was reborn in some ways. By the way, that third bleed that was undetected at the local hospital, is in my Report at the Barrow. Listen to yourself, Listen to your child, or your spouse. Its sad that Doctors know so little, but that only means we CAN learn.

We HAVE to!  

So, Go people, Learn! Empower yourself. You DONT have to feel so helpless.

Now you tell me, looking at this simple photo, how can the best neurologists/neurosurgeons in my City told me my respiratory troubles where not related at my brainstem cavernoma? Because they are "thaught" that any bleeding there equal one thing: Death.

Happy Learning, my friends.