First off thank-you to everyone, for the prayers, thoughts, meals, cards, gifts, etc. and especially love! We love you all and Praise God I will be fine!
Last week was a lot of confusion for me but I know one thing definitively. God the Great Physician is all over this one and leading we through it with love and compassion.
Last week M-F we spent the week in Gainseville / UF and Shands Hospital at the EEG monitoring lab.
The Doctors were attempting to localize the seizures and defintively determine that they were coming from the area of the tumor. All of the Neurologists on the team and our Neurosurgeon all met on Tuesday reviewed the data (from the 24 hour monitoring) and agreed that they were not able to determine with certainty that all of my seizures were coming from the tumor. I know I was confused too!!!
They also said that they could not rule out that the symptoms I'm having on my left side, numbness in my lip, tingling in my hand, slurred speech due to lip twitch are not being directly caused by the lesion in my brain. So they advocated that I wait and see and not rush in to epileptic neuro surgery which is a serious form of brain surgery.
However Dr. Roper our Neurosurgeon believes that it is most prudent to wait and see what the tumor does as my major seizures have stopped and the symptoms on my left side are minor. We will do another MRI in 6 months and if the lesion grows or my symptoms change in any way then he advocates taking it out with surgery but does not advocate that at this point in time.
So in Gainseville's opinion wait and see what my symptoms and the lesion does after six months and be prudent about any decision for brain surgery. Sounds good to me!!
We already had a second opinion in the works at Mayo and are working on that for as soon as possible. We are also consulting other opinions in Massachusetts and California.
We were waiting to hear from the team in Gainseville and also had a second appointment with another neurologist here in Jacksonville on Tuesday December 14, which is why it has taken so long for an update.
While in Gainseville, some of the episodes profiled differently and could have been a combination of medication or other factors. Oddly enough as soon as they took me off the medication that they put me on 2weeks (takes two weeks to get into system) before this round of shenanigans began began. Anyway they changed my medication and I feel much better.
In fact my symptoms immediately improved when they took me off seizure meds which appears too clean to be just coincidence and I don't believe in coincidences anyway. Things that make you Go HMMMM!!!
When I mentioned that and said I thought it was the meds things got much less definitive and exact and we suddenly heard a lot of maybe and not for sures but anyhoo I feel better.
I've been seizure free for three days. Praise God for that. He's healing in radical ways. I feel strong again and finally like myself.
I know this post is long but a lot to say:
While we were in Gainseville God did some incredible things:
On Thursday Night we were going to leave and then in walks this woman named Jackie an anointed sister in Christ who I just know God sent. She had heard I'd be in the hospital from a dear friend at our church and if the whole week made no sense in the practical God brought it all together in the spiritual praying with her.
It was a Divine Appointment! God gave me a bible verse as we prayed Psalm 20 which when I read it could not have been more perfect. Julia who hardly ever gets words and pictures felt the Holy Spirit telling me clearly to " pick up my mat and walk.". Read earlier posts for reference.
If the Gainseville trip proved confusing and hard in so many ways this God prescribed meeting made the whole ordeal well worth it.
On December 14 I also went to Christian Healing Ministries here in Jacksonville after my doctor's appointment. The two amazing prayer ministers prayed for my seizures and for the lesion and let's just say The Holy Spirit came to heal and I walked out of there feeling like I could run down the street! I almost did!
I'm loved healing is happening, God is Good and if you are reading this... I love ya!
I can't wait till I can move around a little more and get to share this testimony.
Love and peace!
Rick has been dreaming of the chance to have a green mohawk at some time in his life. He had the chance years ago in college while playing in a band, but chickened out. Teaching at a small private school does not lend to the realization of his dream.....but having a brain tumor with likely brain surgery does. This blog will track his latest news, progress and with any luck a picture of his green mohawk.
Wednesday, December 15, 2010
Sunday, December 5, 2010
Update from December 3rd
From Rick....
Let me say first that this is several cut and pastes and took me several days as typing and anything requiring brain power or concentration is really hard!
We went in for a CPAP Sleep study test to see how I do sleeping with the apnea machine.
I have to wear an aquaman man mask that is even more attractive than my normal ravishing self and will look great with my green Mohawk!
We then drove to University Florida Gainseville where we met with Dr. Steven Roper an epileptic neurosurgeon. He explained that I have a Cortical Displasure or abnormal growth of brain , a lesion... I think that should make me wicked smart!!! It could also be a D Net Tumor but we won't know till we get in there! The Mohawk is looking pretty likely.
The next step is for me to go and do an EEG study where they take me off my meds and they induce siezures for a week at UF Gainesville. So all you gator fans better come visit :) I go to Gainesville for that study on Dec 6th.
By the way we really like Dr. Roper as he gave us good, specific answers. And he really cared about my quality of life. What's really rad is that the Great Physician is leading this whole process.
Dr. Roper says the next step after the EEG study is to make a decision on if I need brain surgery. If that is the case they should schedule the surgery quickly. There are two options for surgery and both are daunting. But my savior hung a cross so I'm pretty sure God will guide me through either option.
Thank you so much for all the love, prayers, visits, cookies, and pledges for green mohawks.
The hand of God is all over this especially in community. I feel so loved by Him, through you.
Those of u who have pledged to get a green mohawk will be contacted by Brian Horn shortly. And yes, we are still taking open pledges :)
Let me say first that this is several cut and pastes and took me several days as typing and anything requiring brain power or concentration is really hard!
We went in for a CPAP Sleep study test to see how I do sleeping with the apnea machine.
I have to wear an aquaman man mask that is even more attractive than my normal ravishing self and will look great with my green Mohawk!
We then drove to University Florida Gainseville where we met with Dr. Steven Roper an epileptic neurosurgeon. He explained that I have a Cortical Displasure or abnormal growth of brain , a lesion... I think that should make me wicked smart!!! It could also be a D Net Tumor but we won't know till we get in there! The Mohawk is looking pretty likely.
The next step is for me to go and do an EEG study where they take me off my meds and they induce siezures for a week at UF Gainesville. So all you gator fans better come visit :) I go to Gainesville for that study on Dec 6th.
By the way we really like Dr. Roper as he gave us good, specific answers. And he really cared about my quality of life. What's really rad is that the Great Physician is leading this whole process.
Dr. Roper says the next step after the EEG study is to make a decision on if I need brain surgery. If that is the case they should schedule the surgery quickly. There are two options for surgery and both are daunting. But my savior hung a cross so I'm pretty sure God will guide me through either option.
Thank you so much for all the love, prayers, visits, cookies, and pledges for green mohawks.
The hand of God is all over this especially in community. I feel so loved by Him, through you.
Those of u who have pledged to get a green mohawk will be contacted by Brian Horn shortly. And yes, we are still taking open pledges :)
DREAMS DO COME TRUE!!!
Well, Rick got the word from the head doc that he would most likely need a good head-shavin' for the battery of tests he will endure this week at Shands/UF-Gainesville, so he decided to, well......you can see:
Lovin' life with a green mohawk
Mama Crowley was there to witness the shearing of his "model-mop"....she loves it as you can tell
Death Row?
AWESOME!!!!!!
I have to say that there was some trepidation from family before the hair procedure but here are some "after" quotes:
Dickie "Dad" Crowley: "Hmmmmmm"
Donna "Mama" Crowley: "Ricky, you look like an angel!"
Julia (before green was added): "You actually look good; it looks really good on you."
Tucker Ryan: "Mr. Rick, why is your hair green?"
***Disclaimer*** I think that is what Mama Crowley said
Monday, November 29, 2010
11/29 - Message from Rick
"I had a dream that I was washing in a pool and felt weak but stronger as I washed. I felt immense authority to be there as if I had been invited. God clearly said BETHESDA! When I woke up I said to God " thanks Daddy for the geography lesson but Im dealing with a brain tumor and 12 plus seizures because the only thing I know about Bethesda is it's a city in Maryland. I felt compelled to look it up on my bible AP and came to JOHN :5. I instantly burst into tears.
Sometimes God speaks to us so perfectly it practically sings to our heart. The man in the passage was afflicted for 38 years with an illness (I'm 37) and wanted to be healed but every time he tries to go the pool others go in ahead. Recently I spoke to my students at school on National Epilepsy Day! I said I'm an epileptic. I've been that way since 17. Don't worry it's managed by drugs. Epilepsy is noncurable but can be handled by drugs and people can live a very normal life. Jesus had a better plan! Jesus asks the man in the passage if he wants to be healed, when he says yes Jesus answers "arise take your mat and walk." I started praying to be free of seizures and meds 2 weeks ago and I was told by my neurologist that when this tumor comes out I will be free of seizures and meds forever! I am picking up my mat and walking all be it weak and tired!
Sometimes God speaks to us so perfectly it practically sings to our heart. The man in the passage was afflicted for 38 years with an illness (I'm 37) and wanted to be healed but every time he tries to go the pool others go in ahead. Recently I spoke to my students at school on National Epilepsy Day! I said I'm an epileptic. I've been that way since 17. Don't worry it's managed by drugs. Epilepsy is noncurable but can be handled by drugs and people can live a very normal life. Jesus had a better plan! Jesus asks the man in the passage if he wants to be healed, when he says yes Jesus answers "arise take your mat and walk." I started praying to be free of seizures and meds 2 weeks ago and I was told by my neurologist that when this tumor comes out I will be free of seizures and meds forever! I am picking up my mat and walking all be it weak and tired!
Friday, November 26, 2010
Quick thoughts....
I had the chance to sit with Rick for a few hours the other night and discuss this whole situation....I just went to drop some cookies and he opened with "Dude, I have a brain tumor!"....Wow, did not expect that.
His trust and confidence in Jesus as savior, healer, mender of broken hearts, lover of hearts makes me tear up as I write this. I love his heart for Jesus and am always astounded by the boldness of his words and the depth of his trust in Christ. To quote Rick from the other night:
"Another seizure? Bring it on if need be. The battle is already
won....Jesus already conquered death for me; what is there to fear?"
I love his clarity and ability to simply articulate the Gospel of Christ.
His trust and confidence in Jesus as savior, healer, mender of broken hearts, lover of hearts makes me tear up as I write this. I love his heart for Jesus and am always astounded by the boldness of his words and the depth of his trust in Christ. To quote Rick from the other night:
"Another seizure? Bring it on if need be. The battle is already
won....Jesus already conquered death for me; what is there to fear?"
I love his clarity and ability to simply articulate the Gospel of Christ.
11/24/10 - Synopsis from a doctor-friend: Dr. Steve Surratt
Rick ask me to again fill you in on the latest news with his health.
A lot happened today. There are some answers. The MRI from two days and 2 1/2 years ago confirms that there is an abnormality that is most likely a small benign tumor. This is a subtle finding on the MRI and was not seen 2 1/2 years ago--i.e. it was missed. It hasn't changed significantly, and given the type of tumor that it appears to be, it likely hasn't changed in years--it was probably even present 20 years ago when his seizures began. This tumor has also likely been the cause of his seizures all along. The tumor needs to be removed at some point, but not urgently. The good news is that removal of the tumor should cure his seizures and the location of the tumor is in a safe place for removal with a very low risk of any loss of brain function. The surgery can also be done using a "gamma knife" so that no real cutting occurs--all done with high energy radiation. Another piece of good news. Rick is planning to see a neurosurgeon in the next couple of weeks to discuss his options.
The other news is that based on a sleep test he had several weeks ago, he has pretty severe sleep apnea. His neurologist thinks this is contributing to his seizures and that some of his seizures may actually be apneic episodes--i.e. he stops breathing and his brain doesn't get enough oxygen. So, he will be getting a c-pap machine soon. This should help as well.
A lot of info, but Rick wanted me to bring you all up to speed. He also wanted me to go ahead and get it out there that if his brain surgery requires him to shave his head, he reserves the right to have a full Mohawk and to dye it green! Great photo op.
Guys, let's continue to pray specifically that God will heal and remove this tumor and when Rick has a follow up scan to localize the tumor for surgery, it won't be there. Jesus, be Rick's surgeon. Let's also pray that his seizures will cease for good.
A lot happened today. There are some answers. The MRI from two days and 2 1/2 years ago confirms that there is an abnormality that is most likely a small benign tumor. This is a subtle finding on the MRI and was not seen 2 1/2 years ago--i.e. it was missed. It hasn't changed significantly, and given the type of tumor that it appears to be, it likely hasn't changed in years--it was probably even present 20 years ago when his seizures began. This tumor has also likely been the cause of his seizures all along. The tumor needs to be removed at some point, but not urgently. The good news is that removal of the tumor should cure his seizures and the location of the tumor is in a safe place for removal with a very low risk of any loss of brain function. The surgery can also be done using a "gamma knife" so that no real cutting occurs--all done with high energy radiation. Another piece of good news. Rick is planning to see a neurosurgeon in the next couple of weeks to discuss his options.
The other news is that based on a sleep test he had several weeks ago, he has pretty severe sleep apnea. His neurologist thinks this is contributing to his seizures and that some of his seizures may actually be apneic episodes--i.e. he stops breathing and his brain doesn't get enough oxygen. So, he will be getting a c-pap machine soon. This should help as well.
A lot of info, but Rick wanted me to bring you all up to speed. He also wanted me to go ahead and get it out there that if his brain surgery requires him to shave his head, he reserves the right to have a full Mohawk and to dye it green! Great photo op.
Guys, let's continue to pray specifically that God will heal and remove this tumor and when Rick has a follow up scan to localize the tumor for surgery, it won't be there. Jesus, be Rick's surgeon. Let's also pray that his seizures will cease for good.
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