Dr. Friedman is known world wide for his ability to not just remove these tumors successfully, but to remove them without totally destroying his patient's quality of life & leaving them disfigured for life. He performs hundreds of these particular surgeries each year whereas most doctors have never seen an acoustic neuroma or have only had a handful of experiences with them. It's only 1 in 100,000 that are afflicted with this unique tumor which means most brain surgeons have next to no practice working on this particular tumor which is next to the brain stem & facial nerve among many other parts that are important. Like one Oklahoman brain surgeon said during our meeting: " Many brain tumor are fairly easy to remove without risking serious, long term damage, but the location of mine makes it extremely dangerous." He pointed to a diagram of a brain & literally pointed at various places that would've been much better to have a tumor & then gave me the most grim outlook of my future. He didn't give me any hope whatsoever & only added to my fears & admitted that he's done countless brain surgeries, but only one like mine & with devastating results for the patient.
In fact, once this doctor left us alone with his physician's assistant she proceeded to go into detail about what happened to that one & only patient they treated with this kind of tumor. He had to have a feeding tube for 3 years because of the profound disabilities the surgery caused & as she spoke about this case it was as if she & that doctor had already concluded that I'd not have a good result too . Before walking out, the doctor simply said " I'll do the best I can." His frightening words & utter lack of confidence & inexperience with this kind of tumor was obviously not comforting & reinforced my choice to get a world class surgeon that specializes in these & is very confident in his abilities. Furthermore, all the Oklahoma doctors we've spoken with have confirmed that they do not have much experience with this kind of tumor & made my anxiety about the surgery much worse since all they wanted to discuss was the doom & gloom that have been their limited experience with acoustic neuroma's. I naturally don't want to be the first patient that a doctor works on with this kind of tumor or even just the 10th. That could be a fatal choice or leave me a shell of a human being. I've spoken to countless survivors of this tumor & they all say to seek care ONLY from surgeons that have performed hundreds of acoustic neuroma surgeries so they're very experienced in working around this part of the brain without destroying the critical nerves.
I certainly want to give myself the best possible chance of avoiding some of the more common permanent consequences of this 7-10 hour surgery. I don't want to be on a feeding tube for years after surgery like the unfortunate man we were told about by the last brain doctor in Oklahoma or be unable to close my right eye or have a paralyzed face for life or be so unsteady that I can't walk or suffer from electric shock pain in my face from nerve damage & always sick from the vertigo. That's just some of the terrible side effects of having a brain surgeon that's not seen many acoustic neuroma tumors. I want to be able to still be an active part of my little boy's life & not confined to a bed or worse.
The recovery process from this tumor won't be easy no matter what. I'm going to lose my hearing entirely in my right ear and my balance nerve will be severely effected. I'll need physical therapy and possibly speech therapy and nerve therapy to get the nerves working again in the surgical area. Hopefully, my facial nerve can be saved so I don't have facial paralysis which is one of the most concerning things since that nerve is so close to the auditory nerve where this tumor is crushing things as it grows. In any event, I know it will be tough, but I'm very used to physical therapy due to my failed spinal fusion, and I'm used to pain. I'm a fighter and have a strong will to get better no matter what it takes. My little boy needs me and he will inspire me to fight through this and be back to as "normal" as I can be. Nothing will motivate me more than the desire to regain the ability to tightly hold my son & play with him like all mom's do. I want to have memories of his early years & the years to come. I don't want to forget the sound of his sweet laughter & be totally confined to bed from a terrible surgical result like I experienced with my failed spinal fusion.
I MUST not just survive this, but I must survive it with the chance of being basically myself again for my child's sake even much more than my own sake. He is too young to understand this & he's a big mommy's boy. I'm so worried how this will impact him at such a critical developmental age as soon there won't be anyway to shield him from it. He'll see my hair shaved off, my face & head will be very swollen since all brain surgery causes that. I won't be able to talk correctly for some time, so our nightly book reading will be missed by us both. I won't be able to hear him very well being half deaf & he'll have to learn to talk into my left ear. He'll see the massive scar around my ear & scull. My eyes won't look right for awhile or blink correctly & smiling will be difficult or impossible for awhile from nerve damage that's inevitable. My memory will be effected but no way to know how much, so I'm sure he'll get frustrated with me forgetting things & the overwhelming fatigue will prevent me from doing all the things he's used to me doing for him. I will simply use all this as a learning experience for him to see how much one can overcome if they just don't give up & keep the faith no matter how badly life keeps knocking us down.
We will be traveling to San Diego for the surgery on the 19th of November so any help will greatly be appreciated as my husband will have to take unpaid family leave to help me & that's going to hurt us so much financially. The flight to get there is going to also be a hardship on top of medical bills & other related expenses. We will have to get a hotel for part of the time we are in San Diego which the hospital estimates we'll need at least 10 days in the state. I'll most likely be in the hospital at least 5 days and if all goes well I'll be released at that point, but will need to stay nearby another 5 days in case any complications arise & for follow up with my doctor. Then I'll get to come home & begin the real hard work of therapy & the doctors have all said it can take at least a year to recover from all the side effects of brain surgery no matter how successful it is. I can handle that since it's not my first rodeo with serious health issues. I'll just need a bit more help this time to get through this. We will be so grateful for any donations big or small to see us through this scary trial in life! Also, please continue the prayers. I know the power of prayer works as I wouldn't have my precious son without God's help when the doctors had given us no hope of being parents, so never underestimate that power.
Also, please share this with anybody you know who might be moved to help me. I sadly don't have a big family to help me, so I'm depending on friends & the good will of strangers to help me. It's really just my mom who is disabled & just had a hole patched in her heart & my dad who had a stroke in January of this year & recovering from open heart surgery & battling heart failure. Neither of them have the means to help me much. My brother Jim died a decade ago & I have only 1 uncle & my only aunt died last year. My grandma is 97 & is dying in a nursing home from profound dementia. We have so much unmeasurable pain & stress as it is & then this shocking diagnosis has nearly brought us to our knees. Thank you all for reading this long post & God bless!
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