Friday, October 12, 2007
test results
Well, we got back all the test results today. The good news is he does not have Neurofibratosis 2. We are only dealing with one tumor. The tumor is in a difficult place and very close to the facial nerve. He believes the Translab is the only way to go. He believes the Gamma Knife is too risky. He will lose all hearing in the left ear. The other option is to let him keep his hearing for as long as possible and remove it when it gets larger. Again there is the unknown of how fast it will grow, and what it will attach to. Currently, he has the hearing of a 65 year old man in that ear. So, do we wait and see what happens or just do it and face what is ahead. So we have some options to ponder, and then proceed with a plan. If anyone has any insight we would love to hear it.
Sunday, October 7, 2007
How it all started
I have a great life. I am the mother of six beautiful children. Their ages range from 6 years to 17 years old. We have 3 boys and 3 girls and 3 dogs. Never a dull moment, and lots of fun. Our oldest child went for his well check up in May. Everything looked great for our 6', 175 handsome boy. He didn't pass his hearing test ,but the doctor said to come back in 6 weeks as he had a little cold. No worries,{I thought}, and he redid the hearing test again. Kellen still did not pass the hearing test and was referred to an ENT. The specialist had us go to an audiologist for further testing. His left ear had moderate hearing loss with high frequency loss. As I sat their hearing this with my Son, {my husband was out of town for a funeral}, I got a huge lump in my throat and fought back the tears. This audiologist handed us some hearing aid information and told us to go back to our specialist. I was just sick. Looking back that seems like a small doable problem now. The specialist suggested we do an MRI, just to be on the safe side. It was highly unlikely anything would show up.
Kellen had his MRI and then we waited for the results. For some reason I still wasn't that worried. However everything changed when the doctor office wanted us to come in right away. The next morning Kellen, my husband and I went into his office. It was pretty obvious that he did not deliver this information very often. First he tried to call it a cyst, than a grow and finally when we asked him directly, yes it is a tumor. My heart fell. It was hard to put on a brave face for my son. It is called acoustic neuroma. A tumor on the ear nerve . That is why he is losing his hearing. It needs to be removed. He said "it is very rare, the odds are like winning the lottery". My thought why couldn't it have been the lottery! He referred us to another specialist.
Before visiting the specialist, I researched everything I could about acoustic neuroma. Unfortunately , I have not been able to find anyone that is in their teens or young adults. Most people that develop this are middle age or the elderly. Our first doctor's opinions said the tumor needed to be surgically removed . He thought radiation was to risky for a young man. This was what I had been reading too. He ordered more MRI's to rule out neurofibratosis2 {this is disease where your body makes more tumors}, put him on predisone to rule out inflammation.While waiting to finish up the MRI's, we got a second opinion.
It felt like forever waiting for another opinion. The predisone made Kellen feel crazy. Predisone was done and now it was time for another opinion. Yes, it is definitely acoustic neuroma. He too suggested more MRI's to rule out neurofibratosis 2, and felt that the Gamma Knife procedure is the way to go. This is radiation. I was shocked at his opinion. The more I look into this, the more confused I become.
Oh, what to do? We continue to weigh the option while we are finishing all the testing. We keep weighing the pros and cons to each procedure. The gamma knife is an outpatient surgery with little to no recuperation. However, it is new and there are not any long term studies especially on young adults.The majority of patients are the elderly. Surgery is with risks, loss hearing, paralysis of the facial nerve, and balance issues. It has been done for along time and has been effective.
In the mean time he is developing more symptoms, which could mean this slow growing tumor is growing faster. We are trying to have Kellen help us with this decision by having him research this as well. This week we will have a day of tests and on Friday we will meet with the doctor again and try to come to a decision. Time is passing so slowly and this is all I think about. If anyone has any information or ideas, please let me know. I will keep you updated as we get more information.
Kellen had his MRI and then we waited for the results. For some reason I still wasn't that worried. However everything changed when the doctor office wanted us to come in right away. The next morning Kellen, my husband and I went into his office. It was pretty obvious that he did not deliver this information very often. First he tried to call it a cyst, than a grow and finally when we asked him directly, yes it is a tumor. My heart fell. It was hard to put on a brave face for my son. It is called acoustic neuroma. A tumor on the ear nerve . That is why he is losing his hearing. It needs to be removed. He said "it is very rare, the odds are like winning the lottery". My thought why couldn't it have been the lottery! He referred us to another specialist.
Before visiting the specialist, I researched everything I could about acoustic neuroma. Unfortunately , I have not been able to find anyone that is in their teens or young adults. Most people that develop this are middle age or the elderly. Our first doctor's opinions said the tumor needed to be surgically removed . He thought radiation was to risky for a young man. This was what I had been reading too. He ordered more MRI's to rule out neurofibratosis2 {this is disease where your body makes more tumors}, put him on predisone to rule out inflammation.While waiting to finish up the MRI's, we got a second opinion.
It felt like forever waiting for another opinion. The predisone made Kellen feel crazy. Predisone was done and now it was time for another opinion. Yes, it is definitely acoustic neuroma. He too suggested more MRI's to rule out neurofibratosis 2, and felt that the Gamma Knife procedure is the way to go. This is radiation. I was shocked at his opinion. The more I look into this, the more confused I become.
Oh, what to do? We continue to weigh the option while we are finishing all the testing. We keep weighing the pros and cons to each procedure. The gamma knife is an outpatient surgery with little to no recuperation. However, it is new and there are not any long term studies especially on young adults.The majority of patients are the elderly. Surgery is with risks, loss hearing, paralysis of the facial nerve, and balance issues. It has been done for along time and has been effective.
In the mean time he is developing more symptoms, which could mean this slow growing tumor is growing faster. We are trying to have Kellen help us with this decision by having him research this as well. This week we will have a day of tests and on Friday we will meet with the doctor again and try to come to a decision. Time is passing so slowly and this is all I think about. If anyone has any information or ideas, please let me know. I will keep you updated as we get more information.
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