Author Topic: Frustrated and not sure of what to do  (Read 3864 times)

chicagorose

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Frustrated and not sure of what to do
« on: February 22, 2018, 07:39:56 am »
I'm wondering if this has ever happened to anyone. I received a call yesterday from my doctor's office, but since I missed the call, he left a voicemail message. In the message, he states that he wants to cancel the surgery I'm scheduled for because 1) it's small and 2) I should try physical therapy first. When I was diagnosed, I told him that if I had to choose a treatment route, I would go for surgery because I want it completely removed. After meeting with the radiologist and the neurosurgeon, and taking a while to weigh the options, I contacted my doctor and told him that I've looked at all options, looked at my quality of life, taken into account the size of my tumor (small) as well as the pros and cons and decided that I'm opting for surgery. I have started physical therapy but so far, it hasn't made much of a difference. My question is should the doctor make this kind of decision on his own without my input? I feel that I'm the one living with this tumor, my quality of life is the one being impacted and I should be involved on any decisions. Am I wrong in believing this? Should I follow his w&w recommendation? Any feedback would be appreciated.

Abetpds

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Re: Frustrated and not sure of what to do
« Reply #1 on: May 07, 2018, 06:20:44 pm »
Hi Chicagorose,
I recommend you w&w since its small and you do not want a knife on you unless absolutely necessary.  Juist my 2 cents.  I haveno problem with a non malignant tumor that causes no symptoms.  However if I am inconvenienced by it, then thats another mater.
Regina

ANSydney

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Re: Frustrated and not sure of what to do
« Reply #2 on: May 07, 2018, 06:37:53 pm »
Chicagorose, I'm with Abetpds. If you're recommended observation, embrace it with both arms.

I assume your problem is balance issue. Walking every day will help with this.

alabamajane

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Re: Frustrated and not sure of what to do
« Reply #3 on: May 08, 2018, 06:59:03 am »
Chicagorose,,
I’m a firm believer that we must be our own advocate for medical decisions. We need to research and gather advice from several doctors about any issues we are experiencing and then make an informed decision of the direction we need to go.

Not everyone can handle wait and watch,, not everyone is inclined toward radiation or surgery,, we are all different in the way we can handle issues with our body and the effects on our quality of life.

Wait and watch may be prudent in your situation,, I’m certainly not a Dr and this is just my 2 cents,, but if you can’t handle it,, then it’s not for you. You need to get a second opinion,, either by sending your MRI out to House Clinic in LA or someone else who will give you a “free” consult,, and discuss this with them. You are the one in charge of your health and the one to live with your decision. Maybe you need to find a new doctor if this one doesn’t want to discuss his decision with you and hear your concerns.

Good luck to you in your journey,, wishing you peace,,,
Jane

translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

notaclone13

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Re: Frustrated and not sure of what to do
« Reply #4 on: May 08, 2018, 09:44:14 am »
Chicagorose had midfossa surgery on March 13th. She has posted on other threads regarding the after effects of her surgery. Just do a search and you find her other posts.

jaylogs

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Re: Frustrated and not sure of what to do
« Reply #5 on: May 12, 2018, 11:03:16 pm »
Due to the nature of the topic and as notaclone13 correctly stated that she has since had her surgery, I'm locking this topic so people won't make the mistake of offering opinions on an outdated subject.  Thank you all though, for the wonderful advice and keep up the wonderful support everyone shares on this great forum!
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston