Update - "Carniofacial Resection" very soon

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Goyca
Goyca Member Posts: 220

Hello all,

The decision is made, i will be doing a surgery soon "Carniofacial Resection" since this is the best option to remove those stupid 2 cm that are stuck at the buttom of my frontal left skull (in few days the doctor will assign the date of the surgery)

Its a minimum 8 or 9 hours surgery, 1 week recovery in the hospital then recovery at home.

I am worried, scared of the fact that they will open my head !! you know the idea of people messing in your head / skull is freaky and scary.

I have asked about my doctor a lot, and all said great stuff about him and he was highly recommended by doctors who were in MD Anderson. He is known to be one of the best in my country. That thing im happy about, having a really good doctor is a relief.

I am just worried about the posibility of any complications or bad urgent stuff. The most important complications that might take place are the below:

- 1 % chance of damage for my left eye

- Brain Fluid leaking from the nose 

- Bleeding

The surgery is as follow :

They will open the head from one ear to the other on the top of the head . and another openning on the side of the nose (check it on google - i didnt memorize the medical terms) The cut on my face, that is on the side of the nose won't be noticed, there will be no scars. Thank God for that. And the scar on my head will be covered with my hair.

"Carniofacial resuction".. didnt sound really scary to me but after the meeting with th doctors and discussing all the stuff that i mentioned above and more, well im kind of freaking out now !

 

If anyone has been through this surgery i would love to hear your view of it and your advice.

Ill keep you updated about the date of the surgery.

 

Im sorry my post was long... but i feel that there are tons of words in my brain and tons of emotions in my heart at the moment..  well isnt this the case of all of us !

 

Have a great day dears :)

 

Comments

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
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    goyca, well at least now

    goyca, well at least now there is a plan in place.  i'm praying all will go well and you will be problem free.  i had brain surgery (2) several years ago.  they removed a piece of skull from my left ear down to my neck and removed a tumor (non-cancerous, thank God) and had to put a small plate in my head.  all went well.  later i started throwing up brain fluid so they had to go back in and fix the plate b/c it had slid out of place.  all has been fine since.  i had no problems at all w/recovery.  i'm sure you will do fine.  sending you prayers, good thoughts, and positive mojo.  let us know when you get the date.

    God bless you,

    dj

  • hwt
    hwt Member Posts: 2,328 Member
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    goyca, well at least now

    goyca, well at least now there is a plan in place.  i'm praying all will go well and you will be problem free.  i had brain surgery (2) several years ago.  they removed a piece of skull from my left ear down to my neck and removed a tumor (non-cancerous, thank God) and had to put a small plate in my head.  all went well.  later i started throwing up brain fluid so they had to go back in and fix the plate b/c it had slid out of place.  all has been fine since.  i had no problems at all w/recovery.  i'm sure you will do fine.  sending you prayers, good thoughts, and positive mojo.  let us know when you get the date.

    God bless you,

    dj

    Goyca

    Sounds like you are in good hands. Prayers sent your way.

    Candi

  • corleone
    corleone Member Posts: 312 Member
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    Question

    First of all, I apologize I can’t offer any help, I didn’t have surgery. I still have to ask (and sorry if you answered this before, I just missed it). As a few suggested, have you looked into (or ask questions about) CyberKnife? You really, really, have to have this discussed and eventually considered or eliminated (why?) as an option by the medical team.

  • Goyca
    Goyca Member Posts: 220
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    answer

    Thank you Debbie and Candi :))

     

    Dear corleone, I asked my doctor about cyberknife he doesn't recommend it at all, he said radiations are no an easy thing and we should not always run to radiation. He,said carniofacial resection in the optimal solution (I have made several consultations with different doctors they all recommended carniofacial) because it garantuee a total removal of the tumor without exposing ur good cells,nerves,organs to radiation. After the surgery I will do radiation but it its nit enough to totally remove the tumor. cybeknife doesn't provide as total removal as surgery.

     

  • corleone
    corleone Member Posts: 312 Member
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    Goyca said:

    answer

    Thank you Debbie and Candi :))

     

    Dear corleone, I asked my doctor about cyberknife he doesn't recommend it at all, he said radiations are no an easy thing and we should not always run to radiation. He,said carniofacial resection in the optimal solution (I have made several consultations with different doctors they all recommended carniofacial) because it garantuee a total removal of the tumor without exposing ur good cells,nerves,organs to radiation. After the surgery I will do radiation but it its nit enough to totally remove the tumor. cybeknife doesn't provide as total removal as surgery.

     

    Thanks for your answer. I

    Thanks for your answer. I asked specifically about CyberKnife (and others suggested too) because (while still radiation) it’s different in that it has a high degree of precision, it is possible to deliver very high dose of radiation to the target with minimal damage to the normal tissues and structures surrounding the tumor; and it has been proved to be an effective alternative to surgery for small tumors.

  • hwt
    hwt Member Posts: 2,328 Member
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    Goyca said:

    answer

    Thank you Debbie and Candi :))

     

    Dear corleone, I asked my doctor about cyberknife he doesn't recommend it at all, he said radiations are no an easy thing and we should not always run to radiation. He,said carniofacial resection in the optimal solution (I have made several consultations with different doctors they all recommended carniofacial) because it garantuee a total removal of the tumor without exposing ur good cells,nerves,organs to radiation. After the surgery I will do radiation but it its nit enough to totally remove the tumor. cybeknife doesn't provide as total removal as surgery.

     

    Goyca

    Just fyi...I had a recurrence at base of skull wrapped around my carotid artery. It was inoperable. I didn't have any options in St Louis so I went to Mayo Clinc in Rochester, MN. They did SBRT, a pinpoint radiaiton.  Took a few minutes a day for 5 days. Have had PET, MRI and CT showing that tumor gone. Unfortunately, I had another tumor on opposite side so now that has been treated and I am in the wait and see mode. SBRT is not an option for every situation but worth investigating before doing such an extensive surgery. Proton therapy is also a radiation that hits a specific target and then stops with little residual damage, that one takes 7 weeks.  Surgery may very well be your best option but I didn't know if you had heard of these other things.

  • Goyca
    Goyca Member Posts: 220
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    HWT & Corleone, hope you are

    HWT & Corleone, hope you are doing well.

    I had 2 consultations with 2 different radio-oncologists (the best in my country) both said that in my case the cybernife isnt the best option, even if the tumor is 2cm, they are afraid that the sinus fluid, that was blocked because of the mass is infected with cancer cells too. So without surgery they can not remove the fluid if it was infected.

    Thank you both for openning my eyes to new things.

     

    G. :)