Just Diagnosed

[Denise S]

Hi again, I just thought I'd let you know someone else posted on Dr. Telian from U of M and another person posted on that post.   It just so happens they BOTH have their appointments on 3/9 at U of M/

I just thought I would put that out there because sometimes having others going through stuff at the exact time and possibly same place may help.

 I think you can click here to go to the topic:   http://anausa.org/forum/index.php?topic=11949.msg137617#msg137617

Best wishes, Denise

[mom2cbnt]

we did end up having our appointment on Friday.  We didnt see Dr. Telian but did see his associate Dr. El-Kashlan.     I am working on an update and hope to post it all on the boards tomorrow morning.

Based on what he had heard of Robert's symptoms, location of the tumor and size and shape of the tumor he is recommending Translab.    He spent over an hour with us and Robert is feeling very comfortable with his recommendations.  Robert is very at ease with all the information, and the possible outcomes.  I guess Robert's AN is pressing on the brain a bit more than he expected based on the report given from the ENT at Allegiance.  Also apparently his AN has alot of cystic characteristics within it.  Its not a solid white mass on the MRI it has black spots within it which is possibly speeding up the growth rate. Robert had an MRI done about 6 years ago on his brain for a different issue but it wasnt on that MRI, and based on the size 2.3 cm  it should based on expected growth rate of 2mm per year have been there as far back as 10 years ago.  This definately concerned the doctor.   

It was funny because my 11 year old hearing impaired son was with us and chose to turn off his hearing aids during the appointment so that he didnt' have to hear anything.  He was worried already and didnt want the information to scare him.  He is such a sweetheart.

We are waiting to schedule more tests  a CT scan, some nerve tests, and a meeting with Dr. Thompson (who did my friend's son's spinal block last month.) to see what he is recommending before scheduling a surgery.  But if all goes well we are looking at possibly Early May.

I did see that you saw Dr. Telian and he spent a good deal of time with you .  I hope you came away with the sense of peace with your ourcomes that we have.  Robert is very anxious to get this resolved and on with his life knowing that there will bec possible changes as a result

[Denise S]

Hi Alexis,
I am so glad you guys got your appointment and your husband feels comfortable.   That is a HUGE factor when seeing doctors.     

Now, the extra testing he has to do will help with more answers as to which nerves, etc. may be affected the most in there.  Plus it should help with how much the hearing response to the brain issue is.   (has he been told how much hearing loss there is?)    Sure if plenty of hearing loss though and due to the size of his tumor, any dr. would recommend the Translab.

There is one other thing I may just throw out there to you guys:    I know due to your son you are used to the hearing device stuff, etc.   Now if your husband has been having hearing loss, the complete loss with Translab may not bother him as much as some.   (like myself and others, some had good hearing prior to surgery, and opted to have a different kind of surgery to help try to preserve the hearing....then we came out SSD...single sided deafness...due to some issue or another).   My point anyways, is for myself and a few others, that is a tricky thing to get used to.     And, now am researching hearing device options or learning to live & deal with it.      We don't have as many choices due to the fact we can't get air conduction hearing aides, but need Bone conduction.      The one option is the BAHA (bone anchored hearing aid).    Some people opt to have that done at the same time as translab.         Like I say, it's just another thing to throw out there because I am now finding BAHA situation takes while.   "Might" be something to check into.           I also brought some of it up to you because of your husbands work with church.      For me, church has actually been my hardest thing with "my" SSD, but everyone is an individual situation.   

Well, of course you probably didn't need more now, but just letting you know a couple options too.    Feel free to PM me or anything, anytime.

Your son sounds like a true sweetheart and for sure nervous what daddy is going through, but sounds like he has had his own things and should be a great little support for dad!!.   My boys are 11 1/2 & other 10 end of month.

Best wishes,
Denise (MI)

[james e]

I am scheduled for surgery March 24. Deciding how I would be treated was the hardest part...it took me three months to decide . I felt like a ping pong ball...one day gamma knife, then surgery, maybe I'll wait, gamma knife, surgery!  I chose my doctor based on information found on this site. I sent personal messages, and received personal messages. Don't be in a hurry to decide. Use this site to gather information, but in the end, you and your husband will be the ones to decide his treatment. I know how difficult this will be on your son, but in my opinion, it may be better for him to involved in the decision, or at least think he is involved...lemon/lemonade. This is a good opportunity for him help. You helped him with his hearing problem, and now, maybe he can help his Dad. Best of luck to all three of you.

[shanarann]

Hi Alexis and Robert.
I see we have several things in common. I am originally from California and now live in southwest Michigan. I moved here 10 years ago though. I am taking classes at Jackson Community College but live in Kalamazoo. I have my surgery scheduled for May 12. I have not met with Dr. Thompson yet but I am told he is great as well. Dr. Telian told me I would "love him". I was told my AN was cystic as well so maybe that is why mine appears to be growing faster. I really have no idea how all that works. Anyway, I hope that you get all the answers you need to handle this situation in your life. I think we can only take it one day at a time.
Sharon