Tuesday, April 16, 2013

Prayers for a fellow very soon to be cavernous malformation survivor

As I said in earlier posts, I was told "inoperable" by various Neurosurgeon. One of them even said after I had already been told my cavernoma already bled twice: "In its location, in the brainstem, if it had bled, you would be dead" In fact, i heard him say that to my husband (very bluntly I may add) because i couldnt talk ("if it would of bled, she'd be dead".   Later phone calls confirmed that it had indeed bleed twice before.  Anyway, what neurologists and neurosurgeons that are not specialized in Cavernous malformation dont know, is that even the tinniest drop of blood in the brainstem can cause symptoms. In fact, just the pressure of the cavernoma filled with blood can cause symptoms!  I later found that my local hospital visits and stay were due to a microscopic bleeding that to them was impossible because you know, i'd be dead if it bled ;)

Inoperable is usually  associated to either a cancer that had spread beyond repair, or location. When it comes to benign tumors, even devastating ones that doesn't spread, like a bleeding cavernoma for example, it is all about the location.  In case like mine, being told "inoperable" is often due to the surgeon itself not being able to perform the surgery without either killing you, leaving you with more deficits than before, or simply not knowing that sometimes, some surgeon somewhere knows how.  I was sadly shocked to discover that a lot of surgeons dont refer their patients to someone who can perform the surgery. You only have to hope that they wont have to perform emergency surgery on you to save your life when time comes, since they already told you that for them to perform this surgery means complete loss of any quality of life and permanent dependency on other people.

When I was told "inoperable due to location", I fully understood, and of course after some research on my own about the brainstem, I agreed!  I read so many stories and saw so many videos of very sad outcomes, all from people who had the surgery because it was either surgery or death, most of them not even aware of what happened.   I was shocked and amazed when Dr.Spetzler told me he could do the surgery. It was not "inoperable" to him, as "location" is not an issue to him. There is no brain location this man cant touch. He has refused people before; people who risk more with the risky surgery than not doing anything at all because they have not had symptoms, or people that are too far off and would most likely not survive the surgery or simply the surgery wouldnt make them any better anyway.

Like i shared in my latest post, going in to have the surgery would of been so much harder without the support of survivors I met a couple of weeks before. There is more , much more , than the 4 of us out there, but they are hard to find!!

Thru my That brain fart facebook page, a beautiful, full of life mother of 3 messaged me and told me her too, was offered a brain surgery by Dr.Spetzler. She told me that even tho she was pretty decided she would go for it, reading my journey and the successful surgery gave her hope and confirmed her choices. It makes me so happy to know that I can be an encouragement to her, as I was so encouraged by my survivors too!!  I know that some day, she will encourage someone else too!!


{Mary (middle) with her 2 daughters}

Mary is going to Phoenix next week and is going to have surgery Tuesday,  April 23rd.  She is going to have brain surgery to removed the Cavernous Malformation that is located on her Thalamus.   Here is a bit about the Thalamus:


Thalamus:

The thalamus is a large, dual lobed mass of grey matter buried under the cerebral cortex. It is involved in sensory perception and regulation of motor functions. The thalamus is a limbic system structure and it connects areas of the cerebral cortex that are involved in sensory perception and movement with other parts of the brain and spinal cord that also have a role in sensation and movement. As a regulator of sensory information, the thalamus also controls sleep and awake states of consciousness.

Function:

The thalamus is involved in several functions of the body including:
  • Motor Control
  • Receives Auditory, Somatosensory and Visual Sensory Signals
  • Relays Sensory Signals to the Cerebral Cortex
  • Controls Sleep and Awake States

Location:

The thalamus is perched on top of the brainstem, near the center of the brain, with nerve fibers projecting out to the cerebral cortex in all directions. The medial surface of the thalamus constitutes the upper part of the lateral wall of the third ventricle, and is connected to the corresponding surface of the opposite thalamus by a flattened gray band, the Interthalamic adhesion 



I am asking you to pray for her. Its one thing to wake up and realize you are indeed still alive... but it does not stop there!  None of us wants to wake up to a life completely changed forever.  All of us who chose to go thru the risk of surgery in the hope of a better future know that we are doing so knowing the risks and totally ready to start the lengthy recovery process. The ones who are not simply do not have this surgery.  We are ready, but we hope not only will it save our life but will  not take away  a good quality of life. So pray for Mary to  not only have a successful total dissection of her cavernous malformation, but to wake up strong and ready to start the recovery with peace, confidence, but mostly joy and obvious certainty that life as she knew is not only going to get back to normal, but even better with the eternal gratitude that she will never have to worry about this again. 

Thank you for your prayers, my friends. 




8 comments:

  1. Sending prayers and positive thoughts for Mary!! :)

    -- Christine

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  2. Thank you Christine! You bringing hope to someone who brought hope to someone else! :))

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    1. SHe is doing very good J THom! She was able to go home 3 days after the surgery and didnt need any rehabilitation. She still has some double vision and nerve pain on the right side of her face and right arm, but she has medicine for that and is very happy with the decision to get surgery.

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  4. Thanks for sharing this! I also have 2 cavernomas on my cerebellum. They "ooze" is what the neurosurgeon told me which is what causes me to have neurological problem but he says its too risky to do the surgery because they are in the "buisy intersection" of the brain and i would be worse off having it done. Its frustrating getting the headaches and getting up and not being able to walk properly. Im glad there is a doctor out there that is willing to help out us people with such a scary medical condition. I am glad to hear Mary had a good surgery.

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    1. I am so sorry I am so late to respond! How are you doing? Did you send your Scans to Dr.Spetzer??

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  5. All these posts are older so I'm hoping to still get a response here.
    I have a friend that has the CM in the brain stem and had a second surgery in July of this year (2015) which has left him unable to talk, walk and with numbness on one side. Dr. Spetzler did both the surgeries and he was told it was risky but went for it. I think now they wish they hadnt' gone ahead with it. It's very sad. He can't walk, talk and has a constant shaking of the head. They say there's nothing else that can be done. Maybe time??? How long did it take you to recover? The syptoms above came on two weeks after the surgery. Initially he was okay. They said that it was partly the surgery and partly another bleed. Wow. I hope you will tell me it took a long time to recover! So far we see absolutely no improvement. Did you have PT? I think he needs that desperately. Thank you.

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  6. I am so sorry about your friend! All I can say is that YES, it takes time!! I had given up on ever writing again. My fine motor skills in both hands were shot. out of the blue, last summer, I just started being able to write again, 2.5 years after surgery. Recovery is long. THe first year is when you see the most progresses. I was able to walk again unassisted 3 months after the surgery, but still needed a cane for balance once in a while. Here is a link to a post about recovery and the timeline. I hope it can be helpful for you. I need to make another one since its almost been 3 years now. I still am not back to work. I had inpatient rehab for PT, OT, Speech, AR. Make sure your friend gets LOTS of rest. Its amazing how we simply cannot function on lack of sleep after a brain injury/surgery.
    http://windlessdandelionwishes.blogspot.com/2014/03/one-year-in-retrospect.html

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