Author Topic: A really confused guy asking for help!  (Read 4682 times)

omrigee

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A really confused guy asking for help!
« on: April 01, 2014, 08:18:51 am »
Hi! my name is Omri, im from israel and im 20 years old.
for beginning, after reading some of your messages here i understand that giving a name to the tumor is a must in this club so ill hope to find a good one soon :)

10 months ago a weird hoaresness started to bother me, i went to the ENT doctor and he didnt find anything. after 6 months of looking for an answer to the problem, I went to a new ENT doctor, and she found that my right vocal cord is paralyzed, she sent me to a CT scan and a week later i was told that i might have a Glomus tumor in the jugular foramen. went to a MRI scan - the answer is a 2.1cm tumor - might be a glomus or a schwannoma, most of the neuroradiologist thought its a  schwannoma.
im suffering from hoarseness,swallowing problems, shoulder dysfunction and my tongue is kinda paralyzed in one side.

after a month of trying to decide which therapy i should take i chose to take the radiation, on a Novalis TX machine in a very professional center in Israel. they told me to come in 2 weeks to do it. the treatment day has finally arrived and i had the MRI scan, they built my mask, i had a CT scan and everything. a hour before the actually radiation, the doctor called me and my parents and told us that the neuroradiologists of the center thinks that the diagnosis might be wrong and its might be a chondroma/chondrosarcoma. and i have to wait till they decide what to do with me.

this week i met a neurortologist and he told me that they need to take a biopsy and its not hard taking, so theyll find out whats in it, so ill can have the radiation. he also said that if i want to have a surgery, no one in israel (although we have a great neurosurgents in israel) can make this operation, and he wants to send me to Gruppo-Otologico hospital in italy to have the surgery there, he sent the MRI scan there and we are waiting for action.

Im sorry for showing such a confused thing - but thats the way the things went. :(

I wanted to ask you some questions, i know i might find them in other messages, but after seeing couple of messages i understand that every case has its own ideas.

1. If the GammaKnife and other stereotactic solutions has more than 90-90% success rates, why not everyone who fits this therapy is going to do that and choose surgery that can cost in worsening their problems?

2. I saw that in some messages people said that the doing the radiosurgery in one place can be complete different not only by the machine (gamma or novalis) but also results, does expirience really matter as it is in a surgery?

3. Do you know any other big medical centers in europe that are better than gruppo-otologico?

4. Anyone here is about my age and had the same options and the doctors always told him about his age? that he is young and getting a surgery is better, but also told him that radiosurgery can also solve the problem?

Thank you so much, sorry about the bad english!

Omri

Jim Scott

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Re: A really confused guy asking for help!
« Reply #1 on: April 01, 2014, 02:49:23 pm »
Hi, Omri ~

Sorry you have reason to be here but glad you joined us for information and support.

To answer some of your questions:

1. - The reason some AN patients opt for surgery even if they have a small tumor that could be radiated is due to a couple of factors; one being that some patients want the tumor removed, which surgery accomplishes.  In addition, with radiation, the patient is required to undergo annual MRI scans to make sure the tumor isn't re-growing and that can become a chore.  Finally, younger AN patients often are advised by their physician to avoid the radiation treatment because it's long term effects are unknown.  This is arguable but a majority of doctors still hold this view.

2. - I would say that experience with radiation treatment does matter and yes, results can vary.

3. & 4. - Unfortunately, I cannot answer these two questions but I hope some of our other members will.

I hope you can receive a firm diagnosis soon and proceed with your treatment and recovery.  Please try to keep us updated.  Thanks.

Your English is fine:)

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Sheryl

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Re: A really confused guy asking for help!
« Reply #2 on: April 01, 2014, 08:37:26 pm »
Hi Omri - you sound very mature for a 20-year-old.  I cannot answer all your questions and in the end, this is a decision you have to make for yourself but if I were much younger (I am 67), I think I would opt for surgery.  I would find the best neurosurgeon that I felt comfortable with.  I do not know if there have been any real long-term studies with radiation given to young adults. 

Shalom,
Sheryl
9th cranial nerve schwannoma - like an acoustic neuroma on another nerve. Have recently been told it could be acoustic neuroma. Only 7 mm of growth in 18 years. With no symptoms. Continuing W&W

omrigee

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Re: A really confused guy asking for help!
« Reply #3 on: April 02, 2014, 04:26:27 am »
Jim and Sheryl, thank you so much for the quick answers.

I do understand that going to a surgery means 99% not messing with it ever again, but the price you pay - might worsen my vocal cord and hoarseness and even more trouble - loosing my ability to swallow (thats my biggest nightmare right now).. A radiosurgery with 90-95% (and going up) success rate with not a "serious option" of getting my throat worse.. Why would anyone want to have a surgery?!

Im sorry but i think that "arguing" with you really help me

Sheryl

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Re: A really confused guy asking for help!
« Reply #4 on: April 02, 2014, 03:20:34 pm »
Hi Omri - I actually think we have the same type of tumor.  Mine is called a schwannoma and is on the 9th cranial nerve (very close to the acoustic, #8).  I have been lucky and have been able to just have yearly MRI's and watch it for over 12 years.  I do not have any symptoms as you do.  I have seen a number of doctors - some in prestigious hospitals in Boston and have been told that the tumor is in a difficult place.  So, yes, I can see your reluctance to have surgery but hopefully you will get more than one (or two) opinions.  It seems the worst part of this journey is the roller coaster ride making decisions ahead of time.

Please keep us updated,
Sheryl
9th cranial nerve schwannoma - like an acoustic neuroma on another nerve. Have recently been told it could be acoustic neuroma. Only 7 mm of growth in 18 years. With no symptoms. Continuing W&W

omrigee

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Re: A really confused guy asking for help!
« Reply #5 on: April 02, 2014, 04:20:15 pm »
Hi Sheryl and all the forum,

A real "thunder in a sunny day"..

Today I met the #1 radiologist in Israel, after having the really low chance that i do have the Jugular Foramen Chondrosarcoma, his diagnosis was that thats my real problem, and he really think that its this one more than a schwannoma. im real confused but i know that at least my doctors are already started solving it by connecting to one of the greatest names in shredding this monster - Dr. Mario Sanna from Gruppo Otologico in Italy.

I'll keep you updated, hopefully with good news,
Omri :)