Thursday, February 27, 2014

Call confirming surgery

Several people have asked me what the doctor said when he called to confirm the surgery.  I recorded the phone call so I would not have problems remembering it and typed up exactly what he said:

Dr. Hardesty Call confirming surgery

We agree that there is a small cavernous malformation in that front part of where your brainstem meets your spinal cord at the cervical medullary junction.  It is a difficult location to get to surgically, but it is surgically accessible.  Dr. Spetzler’s recommendation to you was that it really depends on your symptoms and your level of botherness, how much it bothers you.  If you want to go through with the surgery that’s reasonably invasive, but provides a good chance of getting that cavernous malformation out, we would be willing to offer that to you.

I mentioned that my current neurosurgeon said that I am in a lose/lose situation and continuing to get worse.  The Dr’s response:  We agree, if you are continuing to get worse I think it should probably come out. 

The way we would get there is, the lesion is on the right side just barely, but we would do an approach on the lateral side on the left to get the angle just right to get there. Because if we came on the right side we would have to kind of reach around and so we would actually recommend a left sided, what’s called a far lateral approach.  That’s a craniotomy at the base of the skull on the left side where we take off some of the bone, open up the lining, the dura, and then head towards the cav mal and take it out.  The only thing is that at times we have to take off enough bone that it destabilizes the area between the skull and the spine.  And at times people do require fusion later in life after this kind of procedure.  But we wouldn’t anticipate you needing it at the time of the initial procedure.  But the hope would be to not take off enough bone to cause instability.  This is just a warning.

I asked what is fusion:  that would be putting little screws and rod between the bones of the skull and the neck, kind of like a brace inside.  That would reduce your neck mobility a little bit in terms of nodding yes and no, but not totally.  Again, that is not an upfront thing that is something down the line that might have to happen.   

I asked that I have heard that a lot of time the symptoms you go into surgery with often get worse with surgery:  yes, that is something we warn everybody with a brainstem malformation about.  Over the first couple of days, usually the first three days, you can have some worsening of your symptoms because of the swelling around the area of surgery.  That does not mean that they are permanent by any means, but you can imagine that the normal tissue around where we operate gets kind of irritated that can cause some symptoms for at least a little while.  However, that does get better quickly. 

I asked what new deficits the surgery could potentially cause:  very similar to what would happen from a bleeding episode.  So sensory changes, weakness on the side of the body, perhaps worsening problems with your speech, or with your tongue function, or with your swallowing function, but overall I think the chances of any of that happening are relatively low.  I am betting that if Dr. Spetzler were to see you in clinic and quote you a number he would say you have probably between an 85 and 90% of getting by with no new permanent deficits at all.  

I asked when I can put my contacts back in (I hate my glasses):  in recovery as soon as I feel like it.

Every day that you don’t have surgery is a day you could have a bleeding episode even if it is unlikely. 

If you are from out of state, you fly in and get seen by us in clinic, you also get a new MRI and that MRI is used at the time of surgery for our navigation system – that’s kind of day one.  You go back to your hotel and then the next day or maybe the day after that depending on the timing, you come in early in the morning and that is when you are admitted for surgery and you have surgery that day.  It is sort of an all in one process; it all gets taken care of within a couple of days. 

I asked about Mike staying with me:  When people are in the ICU or on the hospital floor there is a couch in the back of every room and family members are welcome to stay 24/7, at least one of them.  It can be anyone important to me; they do not have to be family.  After 9 or 10 pm it is just one person, but during the day as many people as can fit in the room are fine. 

I think we can do you some good and get this out. There is no guarantee that your symptoms will improve, but certainly we can prevent them from getting worse.  But there is always a chance for recovery as well especially since things have been getting worse recently and not over those last five years there is always potential for recovery in someone who is young as well.

You come in and have your pre-op and surgery the next day, so that is two days right there.  You stay in the ICU overnight, that’s another day, maybe two days depending on how fast you are waking up and everything.  Most people will leave the hospital by a week after surgery.  I tell people to plan on being in the Phoenix area for seven to ten days.  Obviously if you were to have a new deficit after surgery or need rehab or there was a complication, God forbid (yes he said that), that would put you here longer. 

I asked how much assistance I would need when I go home:  I anticipate you would not need much more than you already do.  Again, unless you were to have some new permanent or temporary neurologic deficit and in that case you would probably go to rehab, until you are at that baseline level again.  Most people get back to their normal lives pretty quick.

He does recommend going to dad’s house after surgery for the help they can give me and Mike.

March 14th we are EVICTING Damian!! 

Saturday, February 22, 2014

Mike’s Perspective . . .

There is a woman whose husband has had brain surgery earlier this week and she is having a hard time emotionally right now.  I asked Mike to write to her from a caregiver’s standpoint and I liked what he wrote so much I thought I would share it as today’s blog . . .

Life with someone who has a Cavernoma is not normal. You learn quickly that everything is different now. Your other half cannot do like they use to. You have to keep in your mind that they want to do everything they did before. Now though they have a health problem slowing them down. Today they might be at fifty percent of their normal energy. While tomorrow it could be more or less energy. So you cannot really plan anything due to what will tomorrow bring, but you want to give them the best in life. When they wake up with a bad day you spend time wrestling with what to do today. You know they will want to go on today like every other day. So I have to remind them that you need to take it easy for their own health. How they respond can change many times through the day. You might get a happy response then an angry one next time. So patience is a key. Keeping in mind how they are feeling at that time. They can be depressed or not feeling good.

Knowing that they will see later on how they responded. When they do it breeds fear. Fear that they will ruin your feelings for them. To the point that you will want to leave them. Understanding that your feelings are not based on how they react all day every day.  So you have to reassure them you have not changed your feelings for them.

The physical problems are a unique experience. You get days where they may not be noticeable then there's bad days. On the bad days you may be a caregiver. This can range from steadying as they walk to trying to convince them to stay seated while you do everything in the home. If you are like me you enjoy being the caregiver when all of your life it was the opposite. Being in a wheelchair I have wanted to be independent so I understand the feeling of I do not want help. Even though you see the one you love and want to do everything to help them. It has ranged from hurrying to keep them from falling to getting things off the bottom shelf at the store. Learning the triggers to problems is a constant thing that can change. Like bending over makes you dizzy to certain sounds that trigger the effects. Yes your life may never be the same, but you see that they are more important than wasting money on movies. To me my other half is the most important thing. Wasting money on things that are triggers is not important to me. Making sure that they are safe and not put in the wrong situation is. I try to find ways to keep life interesting. Because you cannot live a life in fear of everything. Sitting at home scared is not a life. If you are adaptive you can see things like a simple walk can be enjoyable.

So you deal with the times where they are not feeling good or happy. I do not want a happy go lucky life where it gets boring. A challenging life can be more fun. So no matter what mental or physical situation she is in you need to realize what they are going through. Do not stress out. Keep in mind how would you react if you were them. You might act a whole lot worse to your loved ones then they do.

Wednesday, February 19, 2014

Waiting . . .

I mailed my medical records to Dr. Spetzler yesterday to see if he will be able to remove Damian (cavernous malformation).  Now the first of the waiting begins.

When I was at the post office I was so excited!  Mike even joked with me to calm down so I don’t hurt somebody in there.  I put everything in the envelope, sealed it up and went to pay to mail it.  After waiting in line I was getting my wallet out I realized I had forgot to put the money order in and had to get out of line and redo it.  Then I had to wait in line again. 

I think it is setting in more with me what this wait really means.  I am waiting to see if somebody is willing to do surgery on me, remove Damian who has been my constant companion since 2009 and start my new post-op life.  I am waiting to see if I am told there is nothing that can be done for me because of the dangers.  I am waiting to see what my post-op deficits might be.  I am waiting, waiting, waiting
Living with this cavernous malformation has been entertaining, funny, stressful, painful, and all sorts of other ‘fuls!  It has had its ups and downs, but for the most part I know when I wake up tomorrow what that day will bring.  In a way it is easier to know what tomorrow will bring versus waiting and worrying.  There – I said it – worrying! 

I really did not worry until yesterday when a wife put a picture of her husband on one of the support groups who is post-op and on a ventilator.  That worried me!  That scares me!  I know that it is different situations and different everything, but my mom’s final few days were spent on a ventilator and that was my first thought when I saw that picture.  People have talked about post-op many times, but nobody had ever mentioned that.  A few people said that it can be common after this surgery, but again, I had not heard that until I saw that picture.  Please pray for Greg and his wife as they are going through the beginning of post-op that he will heal and go home soon and learn his new post-op life!!

Deuteronomy 6:5 "Love the Lord your God with all your heart and with all your soul and with all your strength." (NIV)

I do love the Lord and I am really holding on to this right now!  How can anybody see what we see every day and not know Him and love Him!  Not just people who are sick, but people who watch the news, people who see how others behave nowadays.  Love the Lord your God with ALL your heart and with ALL your soul and with ALL your strength.  He is there for us, but you have to give Him what He asks in return.  As I sit here and now have new thoughts running through my head, I will not stop loving Him – no matter what happens, He is here for me!!  No matter if I have surgery in Arizona or North Carolina.  No matter if I am perfect after surgery or have deficits.  No matter what surgeon performs this surgery.  No matter what, I will NOT stop loving Him with ALL my heart and with ALL my soul and with ALL my strength.  When my physical strength may be weak and I don’t get out of bed the strength of my love for Him will not waiver and I pray yours does not either!!
I am waiting! 

Lamentations 3:23-25
New International Version (NIV)

23 They are new every morning;
    great is your faithfulness.
24 I say to myself, “The Lord is my portion;
    therefore I will wait for him.”
25 The Lord is good to those whose hope is in him,
    to the one who seeks him;

Friday, February 14, 2014

Valentine’s Day!

Happy Valentine’s Day to everybody!  I hope your day is wonderful and you surround yourselves by people you love.  Not just your husband, wife, boyfriend or girlfriend, but all the people you love today.

A young woman on Facebook said something today that I had not thought of before, but she is completely correct: 

"For God so loved the world that He gave His one and only son that whosoever believes in him shall not perish but have eternal life!" John 3:16

That's the real meaning of Valentine’s day! Who else would give their Son that you might live forever and ever!?

As you are giving everybody hugs and telling them you love them, don’t forget to tell God thank you for his Valentine’s Day gift also!

While we were growing up when my mom hugged us she made a sound that was something like “um um um”.  Even when we spent the night somewhere or when I called her from Venezuela she ended that phone call with “uh uh uh” – we did not have to be with her to know she was hugging us.

So from me to you – a long distance hug – UH UH UH!!  I hope you all have a wonderful Valentine’s Day!!

Tuesday, February 11, 2014

Confirming the need for surgery . . .

I went to see my new neurosurgeon, Dr. Deanna Sasaki-Adams, at UNC Chapel Hill on Friday and here is the update from that visit:

Before seeing the doctor I had a new MRI done so she could see exactly what is going on. Her intern came in and asked all the usual questions about what symptoms I am currently having from my cavernous malformations – what has been ongoing and what started at the beginning of January 2014.

The doctor told me that she believes I had a bleed at the beginning of January and that is what has caused my speech to slur along with a few other new symptoms. She also believes that in September 2012 when my symptoms suddenly got worse and I had to stop working that I had a bleed then as well.

(For those that are unsure what I mean when I say a “bleed” – the cavernous malformations are small groups of blood vessels that are not formed properly and will seep or ooze blood. When they “bleed” this tiny amount of blood pushes on the surrounding brain tissue and may bother that area of the brain causing deficits.)

The doctor told me that she is unsure if my speech will improve or not, but she wants to see me back in 6 weeks. She said if my speech is still slurred at that time than it is probably permanent.

Dr. Sasaki-Adams told me it is time to start looking at having the surgery to remove the cavernous malformation from my brainstem. From here on out the cavernous malformation will be referred to as “Damian”!

I asked the doctor how many brain stem surgeries she has performed and she said less than a handful. When I asked her what problems surgery with her could cause . . . well let’s just say it was not promising!! She told me for difficult surgeries she contacts Dr. Spetzler at Barrow hospital in Phoenix, Arizona and that she would have to do that with this surgery. She also told me that if I want to contact other surgeons who have performed this surgery more than she has that it is fine with her and she will not be offended. One of my aunt’s said that is very good that the doctor told me that, she said that speaks volumes for this doctor!

I am going to send my records to Dr. Spetzler as soon as I receive everything and see if he will evict Damian. Once he receives the records a member of his team should call me within the week to let me know what he thinks. Once he says yes they move pretty fast and the surgery may be scheduled as fast as a couple of weeks away.

I am praying for complete healing, but I am also looking at the possible outcomes. I am reading what others have said their deficits are before and after surgery so that I do not freak out if any of the negatives happen with me.

I have talked with my Dad and Judy about possibly staying with them after Damian has been eficted if I need rehab so they can assist me and Mike in anything that we may need. So as you pray for me during this time, please also pray for Mike – he is a great nurse and we are really going to put him to the test. Please pray for Dad and Judy twofold – if we need to stay with them as they care for me, or possibly even worse, if we get to come home after surgery for them to not worry and know that I am alright! Please pray for my brother and sister also that they will not worry!

Tuesday, February 4, 2014

Pantyhose . . .

Now, you men may not understand this unless you deer hunt, but pantyhose offer great support.  They pull everything in and can even give you a tan.

There are many aspects of our life that we can use support – other than just the pantyhose variety.  We can use support raising our families, studying for school, going for an interview, getting married, when a loved one passes away and so many other reasons!  But, how many of us really have a good support system?

There are so many different ways I have seen people encourage and support one another.  For me I put encouragement and support together because they sort of act as one. 

1 Thessalonians 5:11 - Therefore encourage one another and build each other up, just as in fact you are doing. (NIV)

A simple phone call asking how you are doing – and meaning it! – That is a great way to encourage and support somebody.  I have asked myself before when somebody asks “how are you doing?” – does this person want to know the truth or the polite answer.  The truth could be: I’m doing great; it could be: I am not doing good at all; it could be: I am having the best day ever; it could be: I’m really depressed.  The polite answer – I’m fine.  I can’t tell you how many times that I have simply said I’m fine instead of telling the truth and the person I was talking to just kept going with the conversation.  But, I love it when the person responds with something like – no really, how are you?!  This is AWESOME – this person wants to know the truth, that person is part of my support system, they are an encourager!!

1 Thessalonians 5:14 - And we urge you, brothers and sisters, warn those who are idle and disruptive, encourage the disheartened, help the weak, be patient with everyone. (NIV)

Encouragement and support can also come from strangers.  Have you ever been in public and you drop something and a stranger picks it up and hands it to you?  If you have or if you were the one that picked up the item, you just received or gave a small piece of support to somebody.  Have you ever smiled at a person in the store that looked like they are having a bad day – that is a little bit of encouragement and that could be the only smile that person receives that day!

In today’s world with Facebook and Twitter we also get encouragement and support from people we have never met face to face simply because of social media.  Do you remember when your friend’s, mother’s, best friend’s, uncle’s, nephew’s, cousin had surgery and you prayed for them and commented on the status or “liked” the status – yep, you got it – you gave some encouragement and support that day!! 

Romans 12:8 - if it is to encourage, then give encouragement; if it is giving, then give generously; if it is to lead, do it diligently; if it is to show mercy, do it cheerfully. (NIV)

We all need a support system, at some point in your life something good or bad is going to happen and that support system is going to come around you and cheer you on.   I hope you can build it from people that lift you up and not tear you down!  I hope it is people who you trust to give good advice and not be upset if you decide to go a different way!  I hope it is with people who will pray for you and encourage you! 

2 Corinthians 13:11 - Finally, brothers and sisters, rejoice! Strive for full restoration, encourage one another, be of one mind, live in peace. And the God of love and peace will be with you. (NIV)