So Scared

Posted by jkenser @jkenser, Dec 27, 2016

Hello everyone. I have been doing the “watch and wait” approach on a 1cm non-enhancing tumor in my right temporal lobe for the past 2 and a half years. On my MRI last week the tumor enhanced for the first time. I do not know what type of tumor it is because we were just watching it… Now I am headed to Mayo in the morning to meet with a neurosurgeon.. My life has been flipped upside down within a matter of days. Has anyone else had a tumor in their right temporal lobe? I ask for lots of prayers of complete healing for all of us xoxoxox

@rosesareredmylove2016 Thanks for sharing your story of surgery and recovery. Perhaps others in our group would be interested in learning more about the type of benign brain tumor you had, did the pathology report give it a specific name? Once again, thanks for sharing, I applaud the exceptionally positive attitude that you share! Blessings to you. Teresa

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@jkenser

Thank you everyone for the prayers. It has been a whirlwind of a couple of weeks. I had my appointment last Wednesday the 28th and was scheduled for a right temporal lobe resection on Friday December 30th. It has been one week since surgery. Thank you Lord that they were able to remove the tumor. I am still waiting/praying for my pathology reports and am praying for whatever it was that it was benign and will never come back. I had the best team in neurosurgery work on me and in such quick time. God literally answered all of our prayers. I am so thankful for everyone at Mayo. Being in the healthcare field myself I can tell you that this experience has forever shaped the way I will practice medicine. Nurses and doctors have so much power over their patients fears, I had no idea how much of a difference they can make until undergoing this experience. I think I am healing well. I have never had any surgery before so am still unsure as to what to expect. I can tell you that I woke up from surgery knowing who I am, and how my family is, which is what I prayed for. I am walking, talking, and eating.. all blessings. The pain has not been too bad although the right side of my head is numb and sore. We are just praying for continued healing and great results. Thank you everyone for the kind words. The Mayo clinic is such an amazing place and I am truly blessed to have gotten in as quickly as I did.

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So glad all went well for you ! Keep us updated xo

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@hopeful33250

@rosesareredmylove2016 Thanks for sharing your story of surgery and recovery. Perhaps others in our group would be interested in learning more about the type of benign brain tumor you had, did the pathology report give it a specific name? Once again, thanks for sharing, I applaud the exceptionally positive attitude that you share! Blessings to you. Teresa

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Hello @hopeful33250:
Very nice to hear from you. My Tumor was a Scwannoma.Its a begine tumor.1 in 100.000 people get them.Its been a journey. It was non cancerous.Thank the LORD… Although I am left with no hearing in my left ear and imbalance issues. Every day is different. I am well and try to be positive each and every day…

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@rosesareredmylove2016 Thanks for the additional information about the tumor. Getting these rare tumors can be quite a challenge, I know. I appreciate your sharing. Best wishes and keep in touch with Mayo Connect.

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@hopeful33250

@rosesareredmylove2016 Thanks for sharing your story of surgery and recovery. Perhaps others in our group would be interested in learning more about the type of benign brain tumor you had, did the pathology report give it a specific name? Once again, thanks for sharing, I applaud the exceptionally positive attitude that you share! Blessings to you. Teresa

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I was happy to hear that all is well. It is interesting to hear your tumor was a Scwannoma, as that is what they call acoustic neuromas. I had one done by Gamma Knife Radiation in 1997. The good news is that they do not grow back and usually shrink as we get older. I also was left with no hearing in my left ear and imbalance issues, but that is a small price to pay for what could have been. Sending you blessings and prayers.

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I hope ypu are feeling better.

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I had the samething a year ago in November and it was found by MRI scan because I have MS and primary Immune dificency. I thought all of that was enough but I guess not. I worried a lot and thought the worse. That was wasted time and stress on my body. I had the doctor narrow down the types of tumors he thought it was and I researched all of them. Ha. Brain surgery to me was like being in a car wreck and face was swollen which no one told me would happen. I waited and my tumor was sent to 2 different places for diagnoses and before surgery I was scanned from hips up, thinking the tumor may have matized from somewhere else. Two days before Christmas, my doctor called and told me it wasn’t malignant. Best present ever. Waiting for February when it is time for another MRI to see if it has come back. I have had a number of surgeries. No surgery is fun and different people react differently after surgery. I pray for you that the surgery goes quickly and you recover with ease and life goes on. At times, I forced myself to watch a good movie just to forget what was happening and that helped some. God bless.

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@hopeful33250

@rosesareredmylove2016 Thanks for sharing your story of surgery and recovery. Perhaps others in our group would be interested in learning more about the type of benign brain tumor you had, did the pathology report give it a specific name? Once again, thanks for sharing, I applaud the exceptionally positive attitude that you share! Blessings to you. Teresa

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Just a point of clarification…though the majority of acoustic neuromas (also called vestibular schwannomas) usually do not grow back, sometimes they do. Therefore, most doctors recommend continued follow ups every so often forever. I had my tumor surgically removed in 2002, and I continue to have scans every five years or so even though I am 15 years out.

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I hope that the neurosurgeons at Mayo were able to give you some answers and you are feeling better now.

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Hello @hopeful33250
Your very welcome, Ive found this Mayo blog really helps me at times and keeps me calm…..

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@hopeful33250

@rosesareredmylove2016 Thanks for sharing your story of surgery and recovery. Perhaps others in our group would be interested in learning more about the type of benign brain tumor you had, did the pathology report give it a specific name? Once again, thanks for sharing, I applaud the exceptionally positive attitude that you share! Blessings to you. Teresa

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hey @cynaburst.
Yes you are sooo right. Its been 2 years since my surgery, and I have been having a MRI once a year to see if the tumor is growing, and although my Surgeon said they rarely grow back…HaHa…Mine is growing, so now I watch for signs effecting my balance, eyes or other issues its growing could cause..Saying Vestibular Swannomas never grow back is like NOT true…..

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Hello@birdsong:
My tumor was found when I went into my primary care with an earache, No headaches, imbalance or eye issues. Just a simple ear ache…Found out from Neurosurgeons , they thought it’d been growing for quite a few years. Just try to stay positive as well as you can…. there’s a lot of things the surgeons and doctors don’t tell you, or realize could happen. Thats I’ve found needing to go through this experience myself ,Is if NONE of your doctors have actually needed BRAIN surgery, themselves, they DON”T know how your body will react, NOR do they know YOUR after effects. Everyone is different,,.Just as before I needed this surgery My doctors, ENT, and Primary care doctors all were shocked because with the size of the tumor that was inside my skull, where it was positioned and how big it had grown, They all said I should have had balance issues, Headaches and eye problems…I didn’t,,,…Just an earache…
My point is, just as in anything with our lives, if the person were speaking with has never gone through what we have, Like Brain surgery. That person cannot understand what were feeling, or how things will be for us…They havent been there..Thats why I LOVE this posting thru the MAYO so very much…It helps US understand and connect with others who have needed this surgery, are not sure they really need this surgery, are totally scared to death to even contemplate they are being told they need this surgery. Or have had this surgery and are having issues after. So whatever the reason we are here on this blog, each one of us has a different story, situation and were all here to help each other through it…Take care
May The Good lord send you his Blessings

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@hopeful33250:
Hello, I will keep in touch…I have to get an MRI now every 6 months because the last yearly I had in August showed part of the tumor has indeed grown. Its the part that sits on my 6 and 7 nerve. so if I notice any issues before my next MRI, my ENT needs to know…There’s No set of rules I’ve found that ENT’s or doctors can go by with these tumors. Everyone is different, different effects, reactions, bodies…..So we just need to buck up, take all the POSITIVE we can get and give to others…

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@rosesareredmylove2016

@hopeful33250:
Hello, I will keep in touch…I have to get an MRI now every 6 months because the last yearly I had in August showed part of the tumor has indeed grown. Its the part that sits on my 6 and 7 nerve. so if I notice any issues before my next MRI, my ENT needs to know…There’s No set of rules I’ve found that ENT’s or doctors can go by with these tumors. Everyone is different, different effects, reactions, bodies…..So we just need to buck up, take all the POSITIVE we can get and give to others…

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@rosesareredmylove2016 Yes, a positive attitude does wonders and I’m glad that you are able to achieve that. Since you last had an MRI in August, your next one must be due in a couple of months? Best wishes as you journey on with your treatment and keep us posted. Teresa

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@hopeful33250:
Yes I will keep in touch, I find this site comforting…

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