ANA Discussion Forum
General Category => AN Issues => Topic started by: rvb755 on August 01, 2011, 06:29:44 pm
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Hi,
I am new to the forum and already have greatly appreciated what I have learned in just a few days. I had an MRI earlier in July after having a hearing test due to hearing loss on the left side. The MRI revealed an Acoustic Neuroma which really didn't mean much to me at that point. My ENT gave me a referral to Dr. Daniels in GR and my wife and I met with Dr. Daniels on Fri. 7/29. At this consultation I learned the tumor measures 3.2cm by 5.0cm x 3.3 cm (about the size of a large egg). I have been really stressed ever since finding out the size of my AN.
I have sent a copy of the MRI to HEI and have been told they have received it and Dr. Friedman will be looking at it on Tue. 8/2 and will be calling. I really liked Dr. Daniels here locally and have heard good things but I am strongly considering going to HEI to have the surgery. Dr. Daniels has told me he would get me in for surgery by the end of August and would basically debulk the tumor now and do a 2nd surgery in approx. 1 year for the remainder. I am really anxious to speak with Dr Friedman and get his opinion. At this point I just want this thing out of my head.
The only symptoms I have had are hearing loss and occasional headaches. I have been mountain biking and road biking all summer long so balance has not been a problem. I already am grateful for the things I have learned here, and would appreciate thoughts and prayers from any of you who read this.
Thanks,
Rick
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Hi Rick, welcome to our select community, especially the Golf-Ball-Sized Tumor club (although yours sounds more of an ovoid or egg). You've done the right thing by seeking multiple opinions. What helped me was when the docs at HEI said the same things as my local docs at the med school. Both estimated a 14-18 hour surgery and the possibility of both some facial paralysis and difficulty swallowing post-surgery, combined with single-side deafness (which was fine - I was functionally deaf on that side already).
What neither group could anticipate was the stickiness of the tumor. It had a very happy blood supply and was deep down and wrapped around various nerves. So the surgery ended being quite a bit longer. (Don't worry - I am an exceptionally odd case, your experience will likely be different.) I was also in ICU longer than anyone anticipated and this led to a few other challenges, but nothing that couldn't be handled.
17 months later life is very, very good.
Take a deep breath and keep doing the research. I'm sorry that you had to find us, but glad that you did.
-Tod
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Tod, thanks so much for the encouraging words. I am really praying for such a positive outcome. I am ready to have the surgery and begin the recovery process. I have already come to grips with losing the hearing on the left side, but like everyone else would like to keep the facial nerve function and hope for as little balance problems as possible.
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Rick .....
Just wanting to add that Dr. Friedman is top-notch and will give you his honest opinion of what he would recommend for your case. He and Dr. Schwartz did my second AN surgery 2 1/2 months ago (a regrowth situation, which is very unusual) and I have had an excellent outcome and recovery.
In my mind, going to House Ear Clinic was the best decision I could have made on this AN journey. The doctors at HEI are extremely experienced in dealing with all kinds of acoustic neuromas, but especially with large ones like yours, with potentially more complications. You would be in the best of hands to go there.
Many thoughts and prayers.
Clarice
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Hi there!
I am echoing Clarice's comments. Dr Friedman did my AN surgery 14 months ago. I had a 4+cm tumor and was pregnant. I could go on and on about my positive experience with Drs Friedman and Schwartz. I had a couple of consults before I was put in direct contact with HEI. Both programs said I would need 2 surgeries or surgery and guaranteed radiation. Dr Friedman removed 99.9% of my tumor, saved my facial nerve, saved my sanity and God willing helped me avoid having radiation and a second surgery. I would make the same decision to fly to LA in a heartbeat. There are many skilled docs out there treating ANs with fantastic results, but you have a large tumor and I think that that in itself needs to be taken into consideration. I am sorry for making such bold statements, but I am very passionate about my experience with HEI ;D PM me if you would like to talk about anything! Most importantly, find someone who you feel comfortable with...when you find him or her you will know. Best of luck to you!
Kris
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Thanks Clarice and Kris. It's good to hear positive comments about Dr. Friedman. I was very comfortable with Dr. Daniels here locally, but I did not meet either of the neurosurgeons he works with. I have reservations about the experience with AN surgery of the two local neurosurgeons. Dr. Daniels was going to show them the MRI and let them decide if they even wanted to do the surgery or refer me somewhere else. His prediction was one of the surgeons would say to refer me elsewhere and that the younger surgeon would say no problem we can do it here. I am feeling like I need a very experienced team, even if it is across the country.
Rick
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I am taking it that you are in MI and the GR is Grand Rapids. There have been several MI people on here. Denise S is in Ludington and others over the state. Several have went to Michigan ear. Ann Arbor has surgeons who have spoke at our AN symposiums. If you do not want to go to LA you might look into other MI places as they do do ANs on a larger scale. There was a younger guy Darin who did his at Grand Rapids a couple years ago. I am in Iowa and we have Univ of Iowa which does them on a larger amt also. I know you are a ways from there as I am in central Iowa and it is 572 mi to our daughter in Lansing! LOL! Just make sure you do go somewhere that you are comfortable with the drs and they do ANs on a frequent basis!
Cheryl R
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Cheryl, I am in Michigan near Grand Rapids. I have an appointment with Dr. Figueroa, a neurosurgeon, this afternoon. It looks like he is chief of neurology at Spectrum in GR. If anyone has used Dr. Daniels and Dr. Figueroa in Michigan I would love to hear your thoughts. I did receive a call from Dr. Friedman at HEI, but have not spoken to him yet. He left a message and in the message he urged me to come out to LA due to the size of the Tumor.
Rick
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Hi, Rick ~
First, welcome to the ANA discussion forums. I'm glad they've been helpful to you as you begin your research into addressing your AN. I was diagnosed with a very large AN - 4.5 cm (actually, more like 5 cm once exposed during surgery) that was successfully debulked and later radiated in a comprehensive plan of attack, as it were. I won't attempt to 'medically' advise you at this point because I'm not a doctor. However, your concern regarding the neurosurgeons experience with acoustic neuroma extraction is well founded. The ANA strongly advises AN patients considering surgery to choose a doctor with extensive experience in AN removal. I was very fortunate to find a local doctor that had such experience. He was even a member of the ANA (for decades). He did a splendid job (with his protégé, also a neurosurgeon) and worked closely with the brilliant radiation oncologist that oversaw my FSR treatments a few months later. However, had I not found this doctor, I was anticipating calling HEI and, based on their sterling reputation, scheduling my surgery with them. That wasn't necessary - but I mention it because I concur with your reservations about 'going local' and understand your sense of confidence in HEI. However, I hope you'll give the 'local' doctor(s) a chance. I've always maintained that, as good as the doctors are at HEI, there are many 'local' surgeons that are fully capable of performing successful AN surgery. You just have to seek them out. The surgery follow-up is obviously easier with a local doctor, although most HEI patients don't mention follow-up as an issue. Whatever doctor/facility you choose, Rick, we'll support you and give you all the help/ advice/ information we can.
Jim
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Hi Rick,
I would like to just add a thought or two. You have already been given very good advice. I would like to add to what Jim said about followup visits if your decide to go to HEI. My local doctor, Dr. Wiet, in Chicago, just happen to be a friend of Dr. Brackmann. After my surgery, Dr. Brackmann wrote Dr. Wiet a letter asking him to do follow up care on me, should I need it. It was well received, and I went for a one month hearing check up after my surgery. His services were not needed after that. If you can find a local doctor that works for you, that is wonderful. But if you decide to travel, ask your local doctor if he would do your follow up care, just in case you need it. I wish you the best on your decision. Ann
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Thanks everyone for the advice, I am trying to take it all in to make a wise decision. I was really stressed out this morning, but felt reassured after meeting with Dr Figueroa in Grand Rapids. I know AN surgery is not normally considered emergency, but because of the size of my tumor, I would like to make a decision by the end of the week on where to have the surgery performed. I have had contact with HEI, and they are my first choice if they can fit me in the schedule soon. I could use some feed back on whether I am moving to fast in making a decision. I was able to see my MRI for the first time this afternoon, and the tumor does indeed look large. Fortunately, the neurosurgeon said he did not see any sign of swelling.
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I would definitely go to HEI. I disagree with all of the people who say you should go with the surgeon you are comfortable with. Being comfortable with a surgeon is a great thing...but realistically..sounds ridiculous. This is brain surgery. Experts, real experts would be the only ones operating on my head. A good bedside manner is important...but the skill of the surgeon is number one in my book. This surgery can have life long side effects depending on the route you choose. I have never read or met anyone who went to HEI with Friedman or Brackmann that has life long side effects other than SSD and some minor balance issues, if any. Best wishes to you!
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If you are considering microsurgery, I'd like to express my satisfaction with House Ear Institute.
After all my reading, I learned that the treatment choice depends on the
size of the tumor, its location, and your hearing level mostly. It took me
until September (and I was diagnosed in May2001 and my treatment was at
the end of November2001) to know what I really wanted to do and where to go.
I considered each treatment option seriously and oftentimes felt overwhelmed
with all of the information.
My right sided growth was 1.5 cm. After reflecting over my experience, I
want to *emphasize* one thing: the experience, expertise and passion of the
doctor you select for treatment means everything no matter which treatment.
Most agree that they need experience with more than 100 cases. I went with House and Dr. Brackmann because I wanted to be the typical patient. IMHO, the more complicated the case (size, location, etc), the more expert the doctor one needs.
Through my reading, I also learned about potential side effects and about
the many excellent facilities throughout the country. One of the first
decisions I made was that this was unique enough of a condition that it
warranted going where the expertise works even if it was outside of my local
area. I looked for patterns in the posts on the listserv related to
treatments and doctors. House makes it easy for out of town patients by housing patients at Seton Hall for a nominal fee per night. There is no problem flying after the surgery and is the preferred mode of transportation if you are more than three hours from home. I flew from LA to Chicago 12 days after surgery. Like Ann (Desilu), I follow up with Dr. Wiet in Chicago.
All the best,
Kate
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Rick,
If you decide on HEI, I know they would prioritize your case due to size. They did for me. Dr Friedman will get it worked out! My surgery was a moving date because of my pregnancy. When I couldn't go on any longer, they got my surgery booked on a Friday mid morning and he and Dr Schwartz worked on me until 11pm that night...
To give you line of sight as to how many HEI does...I was wheeled back to the OR the same time as 2 other patients. The hospital staff is well trained on AN patient needs!
Have you talked to Dr Friedman over the phone yet?
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Rick .....
I agree with Kris and Kate. HEI will work you in quickly. Mine was a non-emergent situation and I still was in surgery within six weeks of the decision to go there.
If your experience is anything like mine, you will never regret the decision to go there.
I, as well, flew from LA to D.C. to home 12 days after surgery with no ill effects. The OT/PT team will give you instructions about walking in the plane every 30 minutes but that is to prevent blood clots in your legs (for which any airplane flyer is at risk) and it was an easy thing to do. No pressure issues nor headaches on the flights.
Many thoughts and prayers.
Clarice
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Comfortable with your surgeon means you know they do lots and lots of AN's, not that you may like the bedside manner the most but that you know that they know what they are doing with unusual or different tumor circumstances as it does not all show on MRI's. You really know only once you get inside and see the tumor and what it has done to the nerves,blood supply and/or the brainstem. I am just very glad that my surgeon has had the knowledge about NF2's for my care! Plus the nurses after surgery do AN care on a frequent basis too.
Cheryl R
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I was able to speak with Dr. Friedman yesterday and expressed I would like to have the surgery soon. He communicated this to scheduling and Rita called me soon after. I understand they are trying to work me into the schedule and if they are able to do so this is the route I will take. Due to the complexity of the case I am trusting the experts to choose the treatment option they feel gives them the best chance for success. I also understand my insurance is a PPO and HEI is "in network" so I am hoping it will be covered the same as if the surgery was done locally with an "in network" surgeon. Thanks again to everyone for your advice.
Rick
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Hi Rick,
Yes, you should be covered. I had the same situation. You will be in good hands at HEI. If I can help in anyway just send me a personal email. Ann
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Rick .....
So glad to hear this. Dr. Friedman will work his magic for you, I know.
If you have any questions about accommodations (or anything else), just PM me. Unless any family traveling with you prefers otherwise, Seton Hall was extremely adequate for my husband and my needs during the 16 days in LA ..... close to the hospital and clinic and the price is right!
Let me know if I can help in any way.
Clarice
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I would definitely go to HEI. I disagree with all of the people who say you should go with the surgeon you are comfortable with. Being comfortable with a surgeon is a great thing...but realistically..sounds ridiculous. This is brain surgery. Experts, real experts would be the only ones operating on my head. A good bedside manner is important...but the skill of the surgeon is number one in my book. This surgery can have life long side effects depending on the route you choose. I have never read or met anyone who went to HEI with Friedman or Brackmann that has life long side effects other than SSD and some minor balance issues, if any. Best wishes to you!
Perhaps a bit of clarification is in order.
It is certainly not 'ridiculous' to choose a doctor that is skilled and experienced in AN surgery and yet a person the patient feels comfortable with. However, I seriously doubt that any AN patient that is satisfied with their surgical outcome feels that way based on their doctors winning personality, alone. It's apparent that the physician one chooses to perform AN surgery must have the proper credentials and experience. However, if that same doctor is distant and/or unapproachable (some of the best ones are) the already-nervous AN patient is going to have a hard time putting their confidence in them. As you accurately noted, "this is brain surgery", making it not only demanding but intimate. Thus, having confidence in the doctor opening up your skull can only be enhanced by feeling that he cares about you as a person and you're not just that mornings 'AN case' then on to the next surgery. I had such a caring doctor; a board-certified neurosurgeon with 3 decades of experience with acoustic neuroma removals. He was not only highly qualified and had vast experience, he was also attentive to my concerns and showed a sincere interest in my quality of life, post-surgery. Although I didn't expect him to invite me to his home for dinner I did appreciate his genuine concern for achieving the best possible outcome for the surgery he would be performing. Its that balance we seek. The combination of skill, experience and compassion. I realize we can't always find a doctor that embodies all of these attributes - but we should try. Obviously, given the choice, anyone contemplating AN surgery would choose a doctor with great skill and vast experience over a doctor who simply had a pleasant 'bedside manner'. That's a no-brainer. Fortunately, we rarely have to make that kind of Hobson's choice.
I'm delighted to learn that you enjoyed a good outcome to your AN surgery at HEI and I hasten to add that I have absolutely no intention of disparaging any of their fine doctors, all of whom are well known in the 'AN community' - for good reason: they do excellent work. However, so do many other doctors throughout the country. My point is simply that HEI is not the sole repository of skilled doctors with vast experience in AN surgery and, with the high number of AN surgeries they perform each year, I'm sure they have had their share of failures. After all, we're discussing human beings here, not gods. Still, as I indicated in an earlier post, I, too, kept HEI as my fall-back choice had I not discovered a very fine 'local' neurosurgeon. As with your experience at HEI, my doctor did exactly what he said he would do and did it well. I enjoyed a smooth recovery. It was an nice bonus to 'work' with a highly respected neurosurgeon that also took the time to ensure that my quality of (post-op) life was a good as it could be, within his power to make it so. I hope that every an patient can have a similar experience, no matter where they choose to go for their surgery.
Jim
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Jim, thanks for those wise words. I think you have stated things very well. As an update to my situation, I spoke with Rita at HEI again today and they are able to schedule me for surgery on August 24 and that is what I have decided to do. My surgery will be with Dr. Friedman and Dr. Schwartz with Dr. Steffan I believe as an internist. Rita gave me the phone number for Seton and my wife and I plan on staying there based on the fine recommendations I have seen here. I really am feeling a peace about flying to LA for the surgery even though I have only had a short telephone conversation with Dr. Friedman. I guess the experience level at HEI in doing AN surgery is what is the deciding factor.
On a personal note, August 25 will be my 16th wedding anniversary, so please keep my wife in your thoughts/prayers as well. I had purchased us tickets to a Cubs game on August 24 and we have a hotel room in Chicago for a couple nights which we will no longer be able to use. All of this had been planned prior to my diagnosis and obviously surgery is going to take precedence. Hopefully we will be able to have a couple of enjoyable nights in California while we are out there.
Rick
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Rick ~
As you know, I respect your decision and, along with all of our discussion forum posters, wish you a smooth surgery experience and a splendid outcome. Enjoy California.
Jim
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Hi,
I am new to the forum and already have greatly appreciated what I have learned in just a few days. I had an MRI earlier in July after having a hearing test due to hearing loss on the left side. The MRI revealed an Acoustic Neuroma which really didn't mean much to me at that point. My ENT gave me a referral to Dr. Daniels in GR and my wife and I met with Dr. Daniels on Fri. 7/29. At this consultation I learned the tumor measures 3.2cm by 5.0cm x 3.3 cm (about the size of a large egg). I have been really stressed ever since finding out the size of my AN.
I have sent a copy of the MRI to HEI and have been told they have received it and Dr. Friedman will be looking at it on Tue. 8/2 and will be calling. I really liked Dr. Daniels here locally and have heard good things but I am strongly considering going to HEI to have the surgery. Dr. Daniels has told me he would get me in for surgery by the end of August and would basically debulk the tumor now and do a 2nd surgery in approx. 1 year for the remainder. I am really anxious to speak with Dr Friedman and get his opinion. At this point I just want this thing out of my head.
The only symptoms I have had are hearing loss and occasional headaches. I have been mountain biking and road biking all summer long so balance has not been a problem. I already am grateful for the things I have learned here, and would appreciate thoughts and prayers from any of you who read this.
Thanks,
Rick
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Hi Rick
Sorry to hear about your AN tumor. You are correct it is quite large. I had a 2.5 cm tumor 14 years ago, and the surgery was 13.5 hours. I am not certain what techniques they are using now for the large tumors. I can tell you that if it were me and i could avoid having 2 surgeries i would. Taking part now and part a year from now, boy that opens the door for a lot of potential risks i would think. some of the general risks associated with AN tumors are : facial nerve damage, eye problems balance problems, and the risk of mennigitis because you are opening the skull and other problems. Talk long and hard with your surgeon and ask every question you can think of. It is a long recovery and it is something you will most likely be affected with in some way for the rest of your life. Many surgeons do not explain that, because they do not want to scare you away from the surgery. Be proactive and ask a lot of questions. This site is a good place to do that as well. Good Luck.
Mel
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As an update to my situation, I spoke with Rita at HEI again today and they are able to schedule me for surgery on August 24 and that is what I have decided to do. My surgery will be with Dr. Friedman and Dr. Schwartz with Dr. Steffan I believe as an internist. Rita gave me the phone number for Seton and my wife and I plan on staying there based on the fine recommendations I have seen here. I really am feeling a peace about flying to LA for the surgery even though I have only had a short telephone conversation with Dr. Friedman. I guess the experience level at HEI in doing AN surgery is what is the deciding factor.
Rick
Rita is very helpful and did the scheduling 10 years ago too! Dr. Steffan is the doctor who will follow up with you while you are in California.
Feel free to PM me if you have questions.
Kate
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You have made a great decision! You are in the best hands. The Seton is not fancy...but very comfortable! It was 65$ a night back in 2009. Look in the book in the living room area..I wrote a page..The name is Julie Andrews surgery 2/4/2009!
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Julie, I will look for you in the book. My wife has reserved a room for us for 2 weeks and I believe she said it will be $65 a night.
Rick
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Hi Rick
My daughter saw Dr Daniels for another issue 4 years ago, we have not been to his office since but his audiologists are still ordering her headbands for her BAHAs, so I'm sure they'll do your follow-up without any problems. They've been great working with us over the phone.
Prayers for your surgery
Jennifer
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Hi there. I am Denise S from Michigan that Cheryl mentioned. I was referred to Michigan Ear Institute over Dr. Daniels for my surgery because they are more experienced with ANs. I know you have made your decision to HEI and that is good. The couple things you need to be sure of when you go that far away is: will your local doctor work with you on follow ups if any issues arrive, etc. Also, you do have a large tumor, so just be prepared that you don't know for sure how long you will be there...never know for sure what can come up. Do they really think they can remove it all at once???? Will you have to return again for follow up or another treatment? Many large tumors are done in more of a 2 step process (not all though).
I am with Jim when it comes to a choice on doctors and places to go. I am very happy with Michigan Ear Institute, but some tend to think HEI is better. Well, each situation is so different that there is NO guarantee what can or would happen in each case. I personally couldn't even come close to being able to afford to go to HEI and know the surgeons here at MEI do a lot of AN removals too and they do radiation stuff if needed.
Hope all goes well for you!
OH, I am hoping to get a BAHA implant with Dr. Daniels. He is the closest person to me that does those and his audiologist is very experienced with them too.
Denise (MI)
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Hi Denise, things happened so fast for me I didn't even have time to research tons of different locations. I found out about HEI on this forum and the fact they do free phone consultations if you send a copy of your MRI. I'm sure the Michigan Ear Institute has many fine doctors as well and does great work. Things just worked out really well for me in being able to get scheduled at HEI. I spoke with my human resources department, and HEI is in network for my insurance plan. I can't say whether the surgery is more expensive or not, but I may hit my maximum out of pocket costs no matter where surgery is performed.
Dr. Friedman told me they do not stage surgeries. Meaning they will only perform one surgery. Rita at HEI said plan on being in California until September 2 (surgery is on Aug. 24) but obviously the return date can change depending on recovery. I was very impressed with Dr. Daniels in Grand Rapids, and he has told us he would be happy to help with the follow up work and I am sure we will be seeing him again. You say you were referred to Michigan Ear Institute. May I ask who referred you there over Dr. Daniels?
Rick
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Hi Rick,
I'm new to this as well. I just made my first post tonight and this is my first response to someone else. So I am not feeling very adept at this.
Your post really caught my attention as I too have been recently diagnosed with an AN (3.0x 3.1 x 2.5) and have surgery scheduled at the HEI. When my surgery was scheduled I was told they are squeezing me in on a Friday, and usually do not perform surgeries on Fridays. While I'm relieved they can get me in, it's also a bit alarming that they are doing this on a day they usually have off from surgeries. I'm not sure whether I should feel special or scared to death.
I just took up biking this spring and have really enjoyed it. It's odd that I used my years of not having riden one as my excuse for wobliness on the bike trail. I have also been an avid horse rider since my childhood. I have been showing horses in competitions as recent as 10 days prior to my diagnosis on July 28th. So balance had not been a big issue for me.
My MRI, audiology report and local ENT records were reviewed by Dr. House. He and Dr. Schwartz will be performing my surgery on 9/2. I buried myself in research immediately following my MRI. From everything I have read and from the people in my area who have been willing to share their experiences, I have peace of mind knowing this should be the best place for me to go. I have faith that this is in the Lord's hands now, and hope he will bless the work the surgeons do. I pray the same for you! May you find healing and peace. God Bless.
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Kat, thanks for the prayers and I'm sending prayers back your way. If you are having surgery on 9/2 you will probably arrive before my wife and I leave. I am having surgery on 8/24 and they told me to plan on being there until 9/2, but of course that all depends on how recovery is going. Your story sound so much like mine. I was going about life as normal and finally got tired of the poor hearing and decided to get it checked out. Of course now I wish I had done it much sooner, but I can't worry about that now.
I got the packet from HEI in the mail yesterday and spent last night filling out the medical history questionnaire. I will be having consultations with Dr. Friedman, Dr. Schwartz and Dr. Stefan on 8/23, the day before surgery and have to be to the hospital at 5:30 am on 8/24 for surgery. The date is coming up fast, but I feel ready.
Rick
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Hi Rick,
We might get to cross paths. My surgery scheduled for 4:30 AM on 9/2 at the HEI, the pre-op stuff is on 9/1 beginning at 8:30, and we were told to arrive the day before to make sure we are there. So we will arrive on Tuesday, Aug. 30th. Do you have family staying at Seton Hall?
My packet arrived on Friday. Wow, that's a lengthy document. I worked on mine Saturday and again today. It was challenging to answer the questions regarding when the symptoms began. Mine seemed to have been quite subtle, or at least I had what seemed to be reasonable excuses for them for a period of time.
I feel like the date for my surgery is an eternity away. Now that I know what the thing is and that surgery is the only option, I want it out...yesterday. Although, it is taking some time to plan flights, lodging and make preparations for things at home and work. So I need to have patience.
It's so good to know you feel ready. I have been fortunate to find 2 people relatively close to me here in Iowa who have each shared their AN stories. One of which had your pair of Drs. and their teams. She cannot say enough good about them and would go back to them in a heartbeat. I highly value her opinion and know that she thoroughly did her research to arrive at her decision to not only have the surgery (hers was small enough she could have done the radiation), but to have Friedman & Schwartz. While she is thoroughly pleased with her outcome, the other individual I have come to know would say just the same of her team at the University of Iowa with Dr. Gantz. So I think it's like many have indicated on this forum, there are many experts to choose from and you have to go where you feel most comfortable. For me, most comfortable is gauged by their experience and prognosis for a successful outcome.
I read that you "have already come to grips with losing the hearing on the left side, but like everyone else would like to keep the facial nerve function and hope for as little balance problems as possible." Wow, I would echo that!
Prayers go out to you for a successful surgery and speedy recovery!
Kathy
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Rick and Kathy ......
Many thoughts and prayers for peace and calm as you prepare for surgery. I know you are in excellent medical hands. The rest is up to God.
Take care.
Clarice
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Kathy, I will have family staying at Seton Hall. My wife is flying out with me for the whole stay and my parents are flying out the day prior to surgery and staying at Seton with my wife for a week. Hopefully I am recovered enough by time you get there that we might bump into each other. I can completely relate to wanting the thing out. I have been telling everyone the same thing. My stress level went down a ton after I got a surgery date scheduled at HEI. Do you have anyone staying at Seton while you are there?
Rick
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Rick and Kathy,
Sending good and healing thoughts to you both. I'll be praying for you.
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Hi Rick,
Yes, I do have family traveling with me. While this is not the LA vacation I would have prefered for our kids, they are coming along for a short stay. They really want to be there for the surgery. They are 15 and 17, so we kind of explained everything to them and let them decide. They will be missing some school, but I think they would have been mentally checked out for those days anyway. My husband will be with me for the entire stay. We also have additional family flying out to take the kids around to some sights and make the return flight with them.
A huge weight was lifted when the surgery date was set. I actually slept through the night when I received the news. It's almost a sense of peace that I feel as I am able to share with those who ask where I'm going, when and why. There are certainly lots of other details to attend with home and work in preparation, but having this part sorted out is a relief. I can't mark the days off the calendar fast enough.
To those who have responded to me in this post with Rick, I thank you. It's comforting to not be in this alone. Although, I don't wish it on anyone.
Kathy
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Dr. Friedman told me they do not stage surgeries. Meaning they will only perform one surgery. Rita at HEI said plan on being in California until September 2 (surgery is on Aug. 24) but obviously the return date can change depending on recovery. I was very impressed with Dr. Daniels in Grand Rapids, and he has told us he would be happy to help with the follow up work and I am sure we will be seeing him again. You say you were referred to Michigan Ear Institute. May I ask who referred you there over Dr. Daniels?
Rick
Sorry I didn't get back right away. I am terrible that way with this site now...can be on everyday for days, then not at all for days. ;D
Anyways, my local ENT from Ludington referred me to MEI and my internest recommend it too because he knows others who were treated there too. SO glad to hear you are able to 'try' to not get a multiple staged surgery. Will be awesome if they can get it all at once!! You are going to be in GREAT hands out there for sure and SO glad to hear Dr. Daniels is open to working with people after going there, this is so great!! Heard he was a nice guy. Hope to be able to meet him in the winter or spring to get me a BAHA (thinking the Oticon Ponto Pr).
Wishing you the BEST of luck on your 'journey'. Hope you get to enjoy some of your time out there and see some new things!!
Denise (MI)
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Hi Kathy,
Just wanted to mention one thing. My son, 15 at the time and my sister went with me for my surgery. The day of my surgery, when I was in ICU, (I was told this much later) my son came in to see me and got sick to his stomach. It was the first time that he saw his mother hooked up to all sorts of machines and tubes. It wasn't until the next day that I was alert and talking. He did much better after that. I think he internalized most of his feelings and it got the best of him. Just wanted you to be aware that the first day is not always a pretty sight. Maybe they should wait a day to see you? Although your kids may be able to handle it a lot better than mine did. I wish you the best. Ann