ANA Discussion Forum
Useful Information => Physicians => Topic started by: iluuvpups on February 24, 2010, 02:43:09 pm
-
Hi. i was just diagnosed with AN. My tumor is 17.5 mm x 9 mm in dimension. I'm wondering if anyone has any experience with the doctors at the University of Michigan Hospitals? In particular, Dr. Steve Telian. I'm grateful for these forums as I'm learning a lot, although a lot of it scares the heck outta me!
-
Hi! I hate for you to use the word scared. We all on this forum to support you and give you information and help you out. Your tumor is still small and slow growing. Gather your information here. I'm not from Michigan, so can't answer your question. I'm from Maryland and got four opinions: one in New York, one at the House Ear Clinic in Los Angeles which didn't requre me going to Los Angeles at all, just sending my CD of my MRI to the doctor that answered the phone when I called for information and I emailed by scanning the radiology report also. The doctor's name was Rick Friedman...very well known and nice and thororugh, even called me up on the phone with a recommendation as to which surgery he would recommend.
Go to Dr. Telian and listen to him, find out how many surgeries he's done on AN patients and what he recommends for you, then go gather some other opinions in your area so that you are knowledgeable and not scared....Remember: Knowledge is POWER!!!
Sincerely,
Mei Mei We're here for you!!!
-
I see you are new to the forum and want to welcome you. Are you from MI? I'm from Ludington. About middle of the state, right on Lake Michigan.
I tried a search above, his name does come up, so you may want to try that!!
Best wishes!! Denise
-
I have heard good things about Dr. Telian from a patient of his. I was planning on setting up an appointment to see Dr. Telian for a third opinion on my AN surgery, but because of various reasons I was unable to set up the appointment. I wish I could give you more information. The patient that I spoke to was very happy with U of M.
My first opinion was with Dr. Bojrab from Michigan Ear Institute. My second opinion was from Dr. Monsel (his office was on Woodward in Bloomfield Hills, I think he did his surgeries at Sinai-Grace).
-
I found Dr Telian when I googled him. I thought the name was familiar and and looked and he spoke at our AN symposium along with a Dr Greg Thompson on hearing preservation with AN surgery this last summer. I was at that session and was very imprressed with both of them. Make sure you ask all questions to them as to you feeling comfortable with how many surgeries they have done if that is the route you go. I wish you well! I am a central Iowan but have a daughter who lives in Lansing and works for MSU so I have an MI interest. We have made a few trips there. I personally go to Univ of Iowa for my treatment. Cheryl R
-
Hi and welcome to the Forum.
I met Dr. Telian @ the ANA Symposium this past August. We stood next to each other in the buffett line at lunch and Dr. Richard Wiet introduced him to me.
I think some other forumites met him also - Steve Gerrard comes to mind, and maybe Phyl.
From what I've heard Dr. Telian is a good doctor and Dr. Wiet - who is very well known in AN circles - seemed to think so also, from what I recall.
Jan
-
Jan is right, I had breakfast with Dr. Telian on one of the symposium days.
If you are an ANA member, you can view a slide show of his presentation here:
http://www.anausa.org/members/pdfs/c1_hearing_preservation_surgery_steve_telian_md.pdf
His group has been doing middle fossa with high resolution MRIs and getting excellent results - 90% hearing preservation in their study group. I would let him work on me. ;)
He is not a fan of radiation, however, so don't expect him to recommend that. If you are interested in radiation, you can always find a radiation oncologist to discuss it with.
Steve
-
Hello, I am 8 months post-op and Dr Telian and Dr Thompson did my Translab surgery. Very Very good doctors, pleased with my results. I had some issues with nursing care at UofM but that can happen anywhere!! Please let me know if you have any questions.
Good luck and stay strong, you are not alone!!
Wendy :)
-
Hi. i was just diagnosed with AN. My tumor is 17.5 mm x 9 mm in dimension. I'm wondering if anyone has any experience with the doctors at the University of Michigan Hospitals? In particular, Dr. Steve Telian. I'm grateful for these forums as I'm learning a lot, although a lot of it scares the heck outta me!
Hi and welcome to our family!
I don't have any info on the U of Michigan physicians, but hopefully someone will. I just wanted to welcome you to the forums and say that I'm glad you have found us. The people here are amazing and will help you get through this journey in one piece!
Ernie
-
I had the honour of meeting Dr. Telian at the ANA Symposium last summer in Chicago. As I cannot attest to him for AN treatment (I was treated in Boston), from listening to him speak, he's young, very personable, seems to know his stuff. You should be in terrific hands with him.
Phyl
-
Hi
I live in MI and have heard of Dr. Telian, I didn't realize so many people actually met him in Chicago. I was sent to Michigan Ear Institute after my diagnosis and saw Dr. LaRouere,very nice man. He told me that he does about 40 to 50 AN surgeries a year. I was under the impression that Dr. Telian has not done that many, of course he is younger. My tumor is quite a bit larger than yours so you have more options and you should check out all of them. If my tumor were smaller I would definitely check out radiation. I also sent my MRI to House Ear Clinic and got two opinions for free.
I think i may seek a fourth opinion from Dr. Telian. I will let you know and you do the same :)
Thanks for your post.
Sue in Michigan
-
if either of you meet Dr. Telian, please tell him Phyllis from the Symposium says hi.....
... and both of your perspectives of meeting him will be terrific, if shared on the forums, if others (down the road) also want to inquire about him. Your thoughts (after meeting him) will be helpful!
Phyl
-
Thank you to everyone for your replies. I have a meeting set up with Dr. Telian for March 9. I'll find out more about how many of these he's done then. I'll certainly pass along all the well wishes from people on this forum.
-
The U of M hospital has an excellent reputation and has top-notch drs. A friend of mine is an anesthesiologist with a head/neck surgery group there and he was an invaluable source of info for me. You should be in good hands! :)
Priscilla
-
Hey illuvpups
I have an appt. to see Dr. Telian on March 9th too. What time is your appt?
Sue in Michigan
-
You might want to check out Dr. Daniel Pieper who I believe is working out of Beaumont in Royal Oak now. He did all three of my surgeries (2 micro, 1 gamma) and he's great.
-
You might want to check out Dr. Daniel Pieper who I believe is working out of Beaumont in Royal Oak now. He did all three of my surgeries (2 micro, 1 gamma) and he's great.
Dr. Pieper is actually the Neurosurgeon who works with (I think all) the neurotologists from Michigan Ear Institute. Although, people can see him alone too. He does surgery and also can do gamma(radiation, right?).
He actually has an office in the Newer Providence Park Hospital area in Novi (right above the office of some of the MEI doctors)......I LOVE the Providence Park in Novi!
-
http://anausa.org/forum/index.php?topic=11969.msg137875#msg137875
I hope it's o.k that I do this, but I posted this topic above for iluuvpups and sues1953 It is another person from Michgan with new diagnosis and has an appointment at U of M 3/12.
Sometimes helps having people in nearby areas, maybe going through things the same time.
REMINDER though: all situations are different and all come out different!!
Best wishes to you all!!
Denise (from MI) ;)
-
Hi Denise,
Thanks for your help with the site. I don't think it was mentioned who they saw in MI for a diagnosis. I will PM and ask. They may have already been to MEI
Hey Scott...good to hear from you again. You have shared your opinion with me on MEI. I know you had many complications. How are you doing now? I a seeing Dr. Telian at U of M for a second opinion. I pursued Skull Base Institute but looks like my insurance won't pay.
Sue in Michigan
-
I'm doing well, thank you.
I hope you find the right Doc. I believe it's all about your comfort level. You have to trust who's going in your head!
Oh, and yes Denise, Dr. Pieper is a Neurosurgeon. I guess I misunderstood what you were after.
My Oto. was Dr. LaRouere who I absolutley love. I'm actually going back to Providence Park 3 times next week for an MRI, then appt with Pieper, then with LaRouere. This is just my checkup. HOPEFULLY!
-
Hi, Sue. My appt is at 9:45 am. What time is yours? Maybe we can catch each other in the waiting room. I can email a pic of what I look like to you. You can reach me via email/PM.
(Hi all, FYI reminder only.... please share all personal internet email addresses behind the scenes (ie: via PM here) if you want. Thanks. Phyl)
-
I hope all goes well for you next week Scott :)
Sue in Michigan
-
Hi all. I saw Dr. Telian yesterday. He was extremely personable and upbeat. One of my concerns is that he seemed highly optimistic about the recovery period. He said just a few days in the hospital and I would be back to normal activity in 3 weeks. From what I've read on this board, and knowing that each case is different, that seems faster than what I've read people take to recover.
The other thing that concerned me was his mention of potential facial paralysis usually by accidental cutting of the facial nerve. I guess doctors are human, but this didn't give me a warm fuzzy feeling.
-
Hi all. I saw Dr. Telian yesterday. He was extremely personable and upbeat. One of my concerns is that he seemed highly optimistic about the recovery period. He said just a few days in the hospital and I would be back to normal activity in 3 weeks. From what I've read on this board, and knowing that each case is different, that seems faster than what I've read people take to recover.
The other thing that concerned me was his mention of potential facial paralysis usually by accidental cutting of the facial nerve. I guess doctors are human, but this didn't give me a warm fuzzy feeling.
What surgical option did he recommend? I'll be COMPLETELY honest. I had a dr. tell me about 3 weeks and the 1st person I read on hear with tumor about my size, same surgery, same age.....was sounding good at 3 weeks. I looked at that and thought "yeah, that's me". Not! BUT after speaking with them on the phone after my surgery I found out they didn't post everything. So it wasn't as great as they made it sound. Then at 2 months things started going off for them. JUST NEVER KNOW!! I just want to say I went in TOO overly Optimistic and it wasn't my surgery that went wrong, I also have some spine & neck issues that flared due to laying on table so long, etc. Plus really thought I'd have my hearing too. Maybe not being overly optimistic is bad, buteveryone is different with the outcome....no matter WHERE you go, etc. For ex. the person I mentioned earlie HAD to go to HEI, said they were almost 99% sure they could save hearing......NOT, now SSD also. No one can guarantee anything. These tumors all lay different, can be sticky, etc.
When do you go to MEI?? I don't EVER want to sound negative here, but just letting people know there is no guarantee with any of this. I'm glad you have been on the site leasearching it.
As for facial issues, that Sally is affected by the size of the tumor and how much it is pushing on the facial nerve. I got delayed facial paralysis, but it was due to swelling. Put on a steroid and that helped.
I will PM you my phone number in case you ever want to chat.
Best Wishes,
Denise (MI)
-
Hi all,
I saw Dr. Telian yesterday as well. Hi Carol I'm so sorry that we didn't get to meet but it was great talking to you on the phone. I will look forward to hearing about your appt. with Dr. Kartush on Monday.
I gave the Dr. a big hello from those of you who met him at the symposium ;D
My husband and I thought Dr. Telian was optimistic as well, we liked him very much he spent an hour and a half with us. I ask sooooo many questions that it became redundant because as Denise just said, everyone and every tumor is different and they just don't know exactly what they're dealing with until they get in there
I think I will start another thread on the opinion I got from Dr. Telian because it was so different from my opinion with LaRouere ???.
-
I gave the Dr. a big hello from those of you who met him at the symposium ;D
So, did he remember me and say nice things about me? ;D
Glad the appt went well. Please keep the updates as I know, you are now weighing the opinions. Sue, just remember... even if the info overload gets to be too much....... your gut will help lead you..... and we're cheering you on! :)
Phyl
-
It's true. I was told that I would be good to go at 6 weeks but before the surgery I read numbers varying from 6 to 8 weeks. It's all individual. Then they told me the risks so that I would be prepared for the facial paralysis which I didn't get but I did get the SSD in spite of the retrosig. surgery that is supposed to give you a better chance of that. I was unfortunate in that my 1 cm tumor was sticky and hard to remove. It was bad luck.
Don't take a doc. that is overly optimistic, but gives you the stats. and is supportive. There are a lot of risks to this surgery. Find the doc you feel the most comfortable with that has the most experience and go with that doc.
Mei Mei
-
The other thing that concerned me was his mention of potential facial paralysis usually by accidental cutting of the facial nerve. I guess doctors are human, but this didn't give me a warm fuzzy feeling.
Well, if Dr. Telian remembered Phyl, he should have remembered me. I stood next to him and Dr. Richard Wiet in the lunch buffet line ;D
Did Dr. Telian tell you that most docs monitor the facial nerve with a machine during surgery? This cuts down on the risk of damaging the facial nerve. But as you say, doctors are human and there are no guarantees.
As others have said, post op recovery is an individual thing; we're all different. The usual time docs like to quote is 6 weeks, but it may be more or less depending on what they find when they actually go inside your head (MRIs only tell so much) and how fast or slow you recover (remember, it's NOT a race or a competition).
I was back to work (desk job) part-time 2 1/2 weeks post op and full-time 4 weeks. But, I didn't drive for 6 weeks. Others went back to work later and drove sooner. It's all relative.
The good news is there IS life after AN surgery and lots of us have lived to tell the tale.
Good luck with your decision,
Jan
-
Hey Phyl...Of course he remembered you :) He thinks what you guys are doing for all of us "inflicted" with this condition is wonderful. I have to say he did tell me I might want to lay off for awhile. He thinks I might be getting information overload. ::)
Sue
-
I have to say he did tell me I might want to lay off for awhile. He thinks I might be getting information overload. ::)
No offense, but I agree. Sometimes the information on the Forum and the treatment decision you are trying to make are very overwhelming. Stepping back, taking a break, and then revisiting the situation can do wonders.
Good luck,
Jan
-
Hey Jan.....No offense taken ;D Did my husband pay you to post that? ::)
Sue
-
Sue -
it's a common dilemma of newbies on the Forum. Sometimes the more they read and the more information they gather, the more confused they become.
I've also heard from others who've contacted me through the WTT list that some of the posts on the Forum can be "scary" and that only adds to the dilemma.
Taking a few days, week, or months (if you've got the time and treatment isn't pressing) to regroup has helped many AN patients ultimately make their decisions. There's nothing like a fresh perspective to make things clearer.
Jan