ANA Discussion Forum
General Category => Inquiries => Topic started by: annac on September 06, 2009, 10:18:25 am
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Hi all,
I just found this board and am thrilled to discuss my AN with others that are in the same boat. I"m overwelmed with all the information here and I will read all the posts but I'd like to start by posting my story.
In 2000 (46yrs old) I visited my ENT after noticing a slight hearing loss. After the MRI they found a 1.2cm AN on the right side, pressing on the brain stem. Needless to say I was completely freaked out but luckily had my husband to calm me down and we both did extensive research. As per my ENT, we visited Dr. Michael Sisti at Columbia University in NYC and he layed out all the surgical options, which were horrific. I then sent films to Dr. Jeffrey Williams at John Hopkins for review and he suggested radiosurgery. We then found Dr. Gil Lederman at Staten Island University Hospital and decided to have the fractionated radiosurgery there. (he was wonderful and we are sadden at his current situation)
Since 2000 I had an MRI every year till 2006. My hearing has gotten worse but I can still hear, it's mostly word discrimination that is the issue. I have slight tinnitus but have learned to live with it. The tumor showed slight growth each year with a total growth of 2.3cm in 2006. That was 4 years ago when I decided to just live my life and forget about this damn thing in my head and honestly I really did. I dreaded the yearly MRI but that was it. I never gave it a second thought. My life was calm except for some occasions when (6x a year) I had a dull pain that radiates behind my right ear down my jawline. After having an ultrasound of the carotid artery my ENT says there is no signs of any issues except maybe I have TMJ. I found taking some advil helps and thats it. After reading some posts here I have found some people having experienced the same thing... hmmm
This year at my ENT's urging to monitor the AN I had another MRI done and the tumor was measured at 2.4cm. I now have to revisit my options of what to do. My gut is telling me to not do anything but I do need to find an
experienced doctor that can help me. (My ENT doctor, Dr. Scott Kay told me he is getting too old to recommend the best doctor other than the one he told me about 9 years ago) jeesh....
I asked him what the side effects could be if it continues to grow especially since it was pressing on the brain stem. Thats when my stomach began to churn..... you know what they say "ignorance is bliss", boy, were they right. All the anxiety and stress that was there when I was first diagonosed came flooding back. I've had stomach problems since that last visit. It's not that I didn't know what could happen but balancing that with the possible side effects from surgery it seems there is no good end.
Thats when I found this board.
I am comforted with all of the information here and all the good will. I thank you from the bottom of my heart.
I have an appointment with the Dr. Jed Kwartler at the Ear Specialty Center in Berkeley Heights, NJ at the end of the month. He seems to specialize in AN's and did a fellowship at the House Ear Institute. If anyone has had any experience with Dr. Jed Kwartler or has any other suggestions Please! send my way.
Links:
http://www.earnj.com/
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Hi, Annac:
I suggest you get opinions on treatment from at least 3 doctors, one of each who specializes respectively in surgical resection, CyberKnife (CK) and GammaKnife (GK). Or possibly also consult with a doctor who treats with FSR, such as they do at Staten Island University Hospital. Some of the leading medical centers (in terms of experience) for each type of treatment are:
House Ear Clinic (surgical resection)
CK (Stanford University Medical Center)
GK (Pittsburgh University Medical Center) (not sure if I got that name exactly correct)
Doctors at each of these facilities will review your MRI and other test results for free and offer a prognosis and expected outcome of treatment.
Call House Ear Clinic (search Goggle online for their website and contact info) and ask to leave a message for Dr. Derald E. Brackmann. He literally wrote the book on many techniques used today in brain surgery, is an extremely generous and empathetic man, and will consult with you for free by mail (to send your materials) and phone (for followup discussion).
Email Dr. Steven Chang at sdchang@stanford.edu for a free consultation by mail and phone. Dr. Chang has performed over 700 CK treatments at Stanford and is also a neurosurgeon, so you get two different perspectives (and possibly less bias) with one person. Dr. Chang is incredibly generous with his time. My first contact with him was on New Year's Eve; I emailed him and he responded within 2 hours -- on New Year's Eve! He ended up being my treating doctor and I have nothing but admiration and deep gratitude for him.
If you wish to keep all your options open, you must decide on a form of treatment soon. If your tumor grows to over 3 cm in size, most facilities (Staten Island being a possible exception) will not treat with radiation but will insist on surgery. As you know, an untreated and growing AN can eventually paralyze and kill you. The fact that your AN was pressing on your brain stem at only 1.2 cm size indicates to me that it originated in the CPA (cerebello-pontine angle), which is immediately adjacent to the brain stem. You should not wait much longer before seeking treatment.
I am an advocate of watch-and-wait for tumors that aren't growing. Yours is growing. The consequences of an untreated AN growing are far worse than the side effects of treatment, especially for radiosurgery or radiotherapy (fractionated doses of radiation). And the smaller your tumor is at the time of treatment, the less the side effects will be.
It's a tough decision to make, leaving watch-and-wait and seeking treatment. Most of us on this forum have been there before. We know what you're going through. But you can't afford to ignore this growing AN much longer. We are here to support you in your journey.
Best wishes,
TW
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I have an appointment with the Dr. Jed Kwartler at the Ear Specialty Center in Berkeley Heights, NJ at the end of the month. He seems to specialize in AN's and did a fellowship at the House Ear Institute. If anyone has had any experience with Dr. Jed Kwartler or has any other suggestions Please! send my way.
Hi, annac,
I'm glad you found this forum and hope you'll find it helpful.
Dr. Kwartler spoke at the ANA/NJ workshop on BAHA devices this past April in Berkeley Heights and seemed knowledgeable about BAHAs. I have no idea how experienced he is with acoustic neuromas, but hopefully you'll get a better idea of that at your appointment.
I think just about everyone on this forum would agree that you're doing the right thing by researching your options and preparing to tackle your AN again. You might consider sending your MRI (a CD version is fine) to House Ear for a free phone consult (check their website for details). I noticed on your profile that you live in Central Jersey -- I do, too. I had my translab procedure done at House in January 2008 and could not have been happier with the entire experience. I'll hasten to add that you don't necessarily have to travel to Los Angeles to find experienced AN surgeons and treatment centers. Quite a few posters on this forum have reported on excellent outcomes in NYC and elsewhere in (more-or-less) this geographic vicinity, so hopefully you'll have a number of good options from which to select.
I also hope that you've been encouraged by the optimism and good spirits reflected on this forum. And one more thing -- a group of NY/NJ Acoustic Neuroma patients (some are in the watch and wait stage, others have had surgery and/or radiation treatment) get together a couple of times a year for lunch in New York. Two forum posters -- Debbi and wendysig -- are the organizers and I believe there are tentative plans for a get-together in October. Watch this forum for details! Please PM me if I can help with anything else!
Best wishes as you continue your research and planning.
Catherine (JerseyGirl 2)
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Anna ~
Although I've sent you a PM with the information you requested, I wanted to post a 'public' welcome and reiterate my regret that you have to deal with this re-growth, which is always the AN patient's lingering worry, whether we undergo surgery or radiation.
I heartily agree with the previous posters that you have to address this re-growth. Fortunately, procedures have improved since 2000 and there are more ways to attack the tumor without necessarily sacrificing facial mobility or generating other post-op complications, although there are still no guarantees - just better odds in your favor for avoiding/minimizing post-surgery problems.
I sincerely hope you can surmount your fears, which are perfectly normal, and move forward with surgery at a facility and with a doctor(s) that you're comfortable with. As you can see, we have lots of members eager to offer information and advice, so please feel free to ask whatever you need to and allow us to be a resource and source of support for you as you deal with this vexing situation. We know what you're going through and we want to help. All you have to do is ask. :)
Jim
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Hi, annac -
another forumite, who lives in my area, had FSR with Dr. Lederman and also had regrowth. She subsequently had surgery with Dr. Richard Wiet of The Ear Institute of Chicago and has been tumor free for a couple of years now.
I'm sure anyone qualified to do AN surgery can remove your AN, but if you want to contact someone who has been in your specific "boat", I'm sure she'd be more than happy to talk with you.
She goes by the user name zjane and although she doesn't post here often, I'm sure she'd repond to a PM.
Jan
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Hi Annac,
Dr. Kwartler is also my doctor, and I think he's excellent. He diagnosed my 4mm AN on 5/1/09. Although it's tiny, I'm mildly freaked out that my symptons, which primarily consist of a rolling headache, are steadily getting worse. Although my schedule is to get another MRI with Dr. Kwartler in November, I am in the process of seeking a second opinion. I just think it's the right thing to do. Below are the details for next scheduled meeting of the ANA/NJ. Maybe I'll see you there! BTW, the post by Tumbleweed in this section is outstanding and should be heeded.
Jeff
Date: Sunday, October 11, 2009
Time: 1:00 pm
Location: Summit Medical Group
One Diamond Hill Road
Berkley Heights, NJ
Topic: Fall Meeting - "Acoustic Neuroma: A Time for Surgery?"
Speaker: Philip E. Stieg, Ph.D., MD
Professor & Chairman of the Department of Neurological Surgery
Neurosurgeon-in-Chief, New York-Presbyterian Hospital
RSVP: Call 609-799-4442 or email ananj@aol.com
More Info: All are welcome and refreshments will be served
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Annac,
One thing I wish I did before my treatment choice was to go to an ANA support group meeting. Learn from my mistakes there- and jump on the opportunity... and go to the one mentioned above.
Others have given you GREAT advice here.
I personally liked the way Dr. Wiet moderated the physician discussion panel at the Chicago symposium as he presented a variety of cases to which we witnessed VERY different answers from different surgeons ... including some pro-radiation and some not. The old school and new school were evident. Regardless it is so important for them to still talk things out for the betterment of the treatment of PATIENTS. This was enlightening for all who participated- young doctors, older doctors and the listening audience. (However if you have brain stem involvement you may not want to go that radiation route and an honest CK or GK surgeon should be honest and upfront on this). I think after you receive various opinions- Dr. Weit (who is more on the Mid to East end of the continent -there) might be a good person to help you weight these out.
The panel was actually a painful experience for me as it took me back to that whole decision making process again, prior to surgery, that was agonizing and freaky. (The old and the new school were bickering over my atypical case and I felt like the rag doll being torn in the middle.)
I initially approached my surgeon ONLY for his opinion of what to do as I explained to him the various opinions I received. I saw him as the more neutral guy from Geneva- so to speak... then I went with him because I knew he had experience in both approaches and in truth I really liked talking to him (and still so.) Some surgeons will only advocate the approach they are most comfortable with- my surgeon seemed the most balanced in his suggestion to me. (There was uncertainty of mine actually being an Acoustic neuroma. If we were 100% certain it was an AN... I would have made a different choice ) After carefully studying his background I called him back and asked him to do my tumor dissection -specifically.
My only word of caution with selecting a surgeon who is also a department head (and in my case also an associate dean) – is they have too many responsibilities and you can get lost in the shuffle with post op care… years down the road. (I am finding this)
Remember it is not just the one surgeon you need to look at (for either microsurgery or radiation) but and entire “teamâ€. You will also have to ask yourself which institution will offer you the best care… even if there are some post treatment issues and you need vestibular or facial physical therapy etc.
If you go out-of-state you will need to know who your surgeon is connected to that can care for you when you get home. (I suggest you meet that back up in person so you know who they are offering to you) Although my surgeons were great and tackled a very difficult tumor- know that some later follow up care I had was not good… Being away from them and out-of-state has often been problematic. People in my support group who also went out-of-state, to California, but to a different institution than I - have NOT had these same issues as their surgeons had good connections to refer them to -here in our state.
I painfully remember the "What do I do? & "Where do I go?" ??? stage of my AN Tuma Journey...
BIG BIG Cyber HUGS! (We are here for you and you WILL get through this)
DHM :)
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I agree with the advice above, but also notice that while the AN grew quite a bit between 2000 and 2006 ( from 1.2 cm to 2.3 cm), it has grown only 1mm (0.1 cm) between 2006 and 2009. That is not much change over the last three years. Researching your options is a good idea, but I would also think about waiting for another MRI to see if the AN is really still growing. It is possible that it is done and could remain stable now. Watch and wait is also an option at this point.
Best wishes,
Steve
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Annac,
Just want to comment on the whole TMJ thing. The symptoms of that and an AN that are affecting the Trigeminal nerve are VERY similar. In my case, it was a shooting 'electric shock' like pain, caused by the AN. It was wrapped around my trigeminal nerve. With TMJ, it's the same nerve that is affected, and sometimes doctors don't know that an AN can cause that type of pain (mine didn't, and neither did my hearing specialist that sent me for the MRI that lead to the discovery of an AN). You *could* have both, but I'm thinking it's too much of a coincidence and a neurosurgeon (or similar) with experience with this type of thing will be able to give you a better idea.
(hugs). Sorry you are having this all resurface. I truly can't imagine........
Adrienne
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annac .....
Others have already given excellent advice, especially about seeking out a nearby AN support group. I, also, want to welcome you to this forum of supportive, caring AN patients.
My prayers are for you to reach a decision that feels right for you, based on the most experienced physician information you can find.
Welcome!
Clarice
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Hi Annac,
Everyone has already provided you with great advice. Not sure how much more I can add axcept to wish you the best in whatever decision you decide and to know that everyones prayers will be with you. You will be fine.
Vivian
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Hi Annac,
I am so happy that you have accessed this website as this is the place to be for the most up to date info......I cannot imagine anyone who has this problem not contacting the group that has the most up to date info.
I see that several people have told you to contact Dr. Derald Brackmann from House Ear Institute in Los Angeles. This is definitely where you should be getting the info. You can go online and see what House Ear does and see the qualifications of the doctors...this should be one of your criteria for anyone that you see or contact as it is easy to have a great website or great brochures, but you want to know qualifications!
Please do not wait a very long time as damage to your balance and facial can continue. Dr. Brackmann will talk to you directly...unfortunately when one has radiosurgery they think that the tumor is done and that is not the case.
ANA is a great place for support that you need and there are many of us here to talk when you want. Good Luck and just remember you are still in control to find the doctors.
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...unfortunately when one has radiosurgery they think that the tumor is done and that is not the case.
I would like to respectfully dispute this point as many of us... even further down the road with radio treatments are deemed a "done deal" due to no growth of the AN (goal of the radiotreatments) and are "done". As we know, even with microsurgery, there is always an unfortunate chance for regrowth (as many post surgical and post radio treatment patients here on the forums can attest). Unfortunately, it's all part of having an AN, regardless of which treatment choice is made.
thanks.
Phyl
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I was thinking that the percentage of SUCCESSFUL radiation treatments far outweighs the ones that were not so successful...I had surgery so it is not like I am some cheerleader for radiation...just what I thought...ANY tumor can come back - even if you have the best surgeon and the best outcome!
K ;D
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I was thinking that the percentage of SUCCESSFUL radiation treatments far outweighs the ones that were not so successful...I had surgery so it is not like I am some cheerleader for radiation...just what I thought...ANY tumor can come back - even if you have the best surgeon and the best outcome!
K ;D
Hi Kay :-* :-*
In the case of CK and GK, the success rates are well over 90%, hence, not too many surgical removals post radiation as not that many occur. Rare situations nowadays, although, does happen.
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...unfortunately when one has radiosurgery they think that the tumor is done and that is not the case.
I would like to respectfully dispute this point as many of us... even further down the road with radio treatments are deemed a "done deal" due to no growth of the AN (goal of the radiotreatments) and are "done". As we know, even with microsurgery, there is always an unfortunate chance for regrowth (as many post surgical and post radio treatment patients here on the forums can attest). Unfortunately, it's all part of having an AN, regardless of which treatment choice is made.
thanks.
Phyl
I'm with Phyl. Nothing is ever 100% guaranteed in the world of AN treatment - other than permanent SSD.
Even though I had surgery and my docs said they got all of my tumor - and I truly believe they feel they did - I still have a 1-2% chance of regrowth.
Never say never.
Jan
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Hi Annac-
Just wanted to welcome you and say that Jed Kwartzler was one of three surgeons I talked to when I was diagnosed last year. I believe he is very good and does 20 or so of these surgeries a year (that was the number when I talked to him). I ultimately ended up having my surgery with Drs Golfinos and Roland at NYU just because I felt more comfortable with them (and that they do 50 or so AN surgeries a year). I would encourage you to talk to several doctors, ask all your questions, then decide who you are most comfortable with. There are some other excellent treatment teams in the NYC area, so you have options. And, of course, HEI is always an option if you don't mind the trip.
Please feel free to PM me if you want to talk, okay? (We're about the same age, btw, and my tumor was your size when it came out last year)
Debbi
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Debbi raises a good point: to improve your odds of success (for any type of treatment), choose a doctor who treats many ANs each year. You don't want to choose someone who is still practicing. ANs are extremely rare, so doctors who treat them on a regular (weekly) basis are few and far between. Combine this with the fact that treating ANs is a highly specialized and technical procedure -- and the area being treated is so sensitive and critical to normal function in life -- and you can see why you want to choose someone with both a past and ongoing track record of many successes.
This is the reason I traveled out of state to Stanford to get treatment. I realized my decision could have lifelong consequences. It was worth the extra money and effort on my part to have those I deemed to be the very best treat me.
Best wishes,
TW
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Annac,
Have you seen all these posts? There's a lot of reaching out going on here.
Jeff
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I have read all the replies and other posts on the website and I am just in awe of how much support I am receiving and how much information there is. I haven't posted replies because I've been trying to get myself out of a depressed stuper. I'm also familiarizing myself with all the terms and procedures so I can ask intelligent questions.
I have 3 consultations coming up and the waiting is the hardest part now. I don't know exactly what my condition is and options regarding surgery.
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Hi annac! I think your approaching things the right way. Get oppinions of the best Drs around and come up with what you feel in your heart. Going into 2010 there have been very much a steady improvement over the years into whatever you decide on the course and treatment of ANs. Best wishes, Mickey
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Your situation sound so familiar. I was diagnosed in 2002 and had fractionated radiosurgery in 2004
Recently it was discovered that my tumor has grown. I have spoken to my doctors here in Rochester NY and they have given me options and explained the risks of surgery and I don't really think I have any option other to let them operate. I just wish I felt more secure about everything. I don't know if I need to seek out other doctors for more information or if I can trust them to give me the best advice. I have read extensively over the years but I am also so "freaked out" that I don't know if I am making the correct decisions. Has anyone had surgery in Rochester, NY?
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I agree with the advice above, but also notice that while the AN grew quite a bit between 2000 and 2006 ( from 1.2 cm to 2.3 cm), it has grown only 1mm (0.1 cm) between 2006 and 2009. That is not much change over the last three years. Researching your options is a good idea, but I would also think about waiting for another MRI to see if the AN is really still growing. It is possible that it is done and could remain stable now. Watch and wait is also an option at this point.
Best wishes, Steve
Annac & Debi,
I am so sorry you are dealing with the issues of regrowth after radiosurgery.
Seems like the AN journey can certainly be unpredictable at times.
May i now ask you a question? How do the doctors determine it is regrowth and not swelling from the radiation?
Annac - best wishes that you get to feeling better and your depression lifts while you are waiting for the upcoming appointments.
(I hate to wait, myself and get more and more anxious right before the next appointment/tests.)
Debi - sending you my best wishes as well that you can get past the unsettled times and get on with making appointments to find the answers you need.
I don't know about the doctors in your area, but i am sure others will chime in. If you don't find docs in Rochester, i hope you continue your quest to find the
best!
While you are both doing this research, etc., please take time for yourself. I know this is not always easy to do; but hope that some 'me time' will help you find peace.
My thoughts and prayers are with you both.
Please keep us posted on your progress.
Sincerely,
Sue
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I'm also familiarizing myself with all the terms and procedures so I can ask intelligent questions.
Annac -
don't be concerned about your lack of AN knowledge - we all started out in the same place. I had never heard of an acoustic neuroma until I was diagnosed with one. Ask any questions you want, don't worry about whether they are "intelligent". There is no such thing as a dumb question. We are here to help each other and a lot of what the majority of us know we've learned along the way.
You might also want to ask the ANA for their brochures - if you haven't already - I learned a lot from reading them.
I hope your consultations go well.
Jan
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This is my current status since my last post. I spoke directly to Dr. Brackmann from HEI and he was wonderful and comforting. My case falls into the "failed radiated AN" file. He recommends without a doubt the translaybrinth approach in my case. He sent me all his published data with relation to this approach and his finding with surgeries for my specific case. Dr. Brackmann has performed 50 of theses procedures and his total group has performed 100.
I then went to visit Dr. Kwartler in Berkely Heights in NJ. He is going to be my new local ENT doctor. I do have confidence in him (he did a clinical fellowship at HEI) but he has only performed 3-5 procedures. He did make an excellent point when discussing the actual surgery. He is a neuro-otolgist and works with a neurosurgeron, you have to get a great neurosurgeon because he is the specialist when it comes to vascular issues. Peeling the tumor away from the facial nerve is tricky and the neurosurgeon has the greater knowledge about vascular nerves.
My next step is consulting with Dr. Post and Dr. Roland both in NYC.
My gut feeling right now is that I have to chose the group that has had the most experience in the actual surgery and that seems to be the House Ear Institute in Los Angeles. I've never been to California and my family is pumped up about all going out there, renting a house and making the surgery part of a a recovery/vacation.
Really bumped out about the possible side effects of the surgery but I will pull through and do the best I can!
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I then went to visit Dr. Kwartler in Berkely Heights in NJ. He is going to be my new local ENT doctor. I do have confidence in him (he did a clinical fellowship at HEI) but he has only performed 3-5 procedures.
My gut feeling right now is that I have to chose the group that has had the most experience in the actual surgery and that seems to be the House Ear Institute in Los Angeles.
I totally agree with your line of reasoning ... but you're smart to continue to investigate a few more local options -- you still might find a good comfort level closer to home. For what it's worth, I went from my home in New Jersey out to House for my Translab in January 2008 and would do it again in a heartbeat. I, too, dubbed it as a "surgery/vacation" adventure and am thankful that it turned out that way. I'm sure you've noticed on this forum that everyone's experience is unique, so you need to be prepared for a spectrum of post-surgery outcomes.
Best wishes as you continue your research.
Catherine (JerseyGirl 2)
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Annac ~
Just popping in to add my voice to the chorus encouraging you to continue your research and agreeing that the surgeon's AN removal experience is critical to helping tilt the odds for a successful (no complications) AN surgery. My neurosurgeon had 30 years of AN removal experience. He freely admitted that in the early years (1970's) some of his AN-removal surgery patients ended up with problems, mostly facial paralysis and/or headaches. He convinced me that the knowledge and technology in the AN-removal sphere of neurosurgery had progressed exponentially in the years since he began operating on ANs and that he was very confident I would have a good outcome. His confidence was justified by the surgery outcome. I survived the debulking surgery with no headaches, facial deficits or other complications and my pre-op symptoms disappeared. As planned, I underwent FSR 3 months later, again, with no problems and a successful outcome (tumor necrosis and shrinkage).
The House Ear Institute is well-respected and boasts a long history of performing AN surgeries. Many of our members are 'veterans' of HEI and were pleased with their surgical outcomes. Should you chose HEI, I'm sure you'll be equally satisfied. Remember, although surgery outcomes can't realistically be guaranteed, AN surgery complications are not necessarily guaranteed, either, as many of us can attest. Find a doctor/facility/treatment you're comfortable with, put your trust in that doctor's judgment and skill, take a deep breath and try to focus on your recovery and life without an acoustic neuroma residing inside your skull. Should you choose HEI, try to enjoy the 'vacation' in sunny California. :)
Jim
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I will just toss in that for surgery following failed radiation, experience with that particular situation is also helpful. House has done very well this past year with several forum members who went there for surgery after radiation. They know the ropes and have produced very good outcomes (even as they whine that it was "harder").
I think a combination surgery/recovery/vacation is an excellent idea. 8)
Steve
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Hello Annac & Debbi.
I had CK in fall 2006 on a 19mm an. It started growing again and was over 26mm last MRI in July09. All docs I sent my CD films to said do not wait, as it may effect facial nerve. Dr. Schwartz and Friedman at house was my choice, after consulting barrow (where I had ck) and house. I did not want to take any risks and had to travel no matter where I went for Treatment.
Dr. Schwartz told me he had operated on over 100 failed radiation tumors. I'm so glad went to them (Aug 24) and did not wait, the tumor was very sticky and it took several additional hours (8 total) to get it out - but I was told 99% was removed and no facial issues!
I don't think its good to radiate a tumor over a certain size due to area restriction and swelling, if I recall most docs told me 19mm was as big as they were comfortable with when I had CK. Swelling should be gone in a couple of years after radiation treatment. I know that tumors can regrow with radiation or surgery, but I felt no choice after already having had the radiation fail and did not want more rays on my head.
best wishes, Melinda
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Annac, did I mention I was released 1 week after surgery? I stayed in LA and extra week because I already had my airfare booked and it was more restful in a hotel than home.
I too was concerned about side effects and thought I'd be in LA for weeks, and home for weeks recovering...I know everyone is different but I too had a radiated tumor and I'm doing very well!
Drove 8 hours last week to visit my mom...getting around fine. I really did not want to have surgery, avoided it...but it was not as bad as I expected - mainly just the first 3 days then significant leaps in recovery. For me the sudden ssd with Translab is the most difficult adjustment, but I feel very very lucky to have not had more side effects via the tumor or surgery or radiation!
Melinda
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Annac,
I would also recommend you seeing Dr. Bederson and Dr. Smouha also at Mt.Sinai. I had my surgery there and was home in 3 days with very few after-surgery issues. Dr. Bederson is the head of the Neurosurgery department there and Dr.Smouha is an ENT. Both were excellent and the hospital was fantastic.
Neal
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Do you know how many procedures they have performed? I also have a special case since I have a failed radiated AN.
Thanks for you info
Anna
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It is scary. You'll pull through. We're here. I don't have any magic words to say to make it better. I wish I did. {{hugs}}
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Correction to my previous post, I was "released" to travel home in 1 week after stiches were removed and followup appointment, released from the hosptial early 3 days..wed was surgery, left sunday afternoon.
I wanted to make this clear so if you're traveling from out of state with companions it was understood. I could've gone home then, but my airfare was already purchased and hotels, etc arranged. :) I was prepared to stay longer just in case...
Ask the docs how many failed radiations they've worked with, when I had these discussions with doctors it also gave me personal insight to as how the felt about radiation, or even re-radiation that helped me with my decision.
I was concerned primarily with the facial nerve, as it was my main symptoms and I had 100% of my hearing. Dr. Schwarz said from a learning lesson point of view, that they used to focus on removing as much of the tumor as possible, even to the point of cutting the facical nerve, but not these days...now he felt is was better to leave a small piece and save the nerve, which is what they did. and I'm glad.
melinda
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Dr. Schwarz said from a learning lesson point of view, that they used to focus on removing as much of the tumor as possible, even to the point of cutting the facial nerve, but not these days...now he felt is was better to leave a small piece and save the nerve, which is what they did. and I'm glad.
This point came up at the Symposium in Chicago in August. I am glad to see it becoming a trend, and hope it continues. The little scraps left behind usually die from lack of blood supply, and if they ever do start anything, they are easily zapped.
Steve
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I agree, Steve. The whole point of surgical resection (or any other type of treatment, for that matter) is to keep the tumor from destroying nerve function. It makes no sense to cut or remove a cranial nerve just to get the last bit of tumor cut out; that's counter-productive to one of the primary goals (the other being to stop the growth).
I also feel the same as Donnalynn. I had CK, but if I had chosen surgical resection I, too, would've chosen HEI (although I'd now consider SBI). If I'm not mistaken, HEI have done the most AN surgeries in the U.S. Dr. Derald Brackmann "wrote the book" on many of the techniques used in brain surgery today. That experience and insight is invaluable for what many doctors call the most technically demanding surgery one can do on the human body.
Best wishes to all,
TW
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I just had a consultation with Dr. Post at Mt. Sinai and he too agreed that his ultimate aim is to preserve the facial nerve even if he has to leave a bit of the tumor. He recommended the retrosigmoid approach for my case and I must tell you that a weight has been lifted from my shoulders. I expressed my reservations with the retro approach because I read that the major side effects are headaches. He assured me that those side effects are a thing of the past. Nothing is ever certain when it comes to side effects but he said that headaches were caused due to bone dust left inside and caused irritation leading to headaches. He was so confident and comforting.
Dr. Brackmann advised the translab approach and as much as he was so comforting and assuring I really didn't want to completely give up my hearing (even though its not that great).
My husband and I are realizing now that the important person to talk to is really the neurosurgeon on the team. He is the one in charge of all the vascular surgery and the one "peeling" away the tumor from the facial nerve.
Jury is still out on where we'll go for surgery. Still waiting for a consultation with Dr. Friedman/Dr. Schwartz and Dr. Roland/Dr. Golfinos.
Thanks again for everyone's support on this board. If I can pass along some advice at this early stage in my journey. Knowledge is the key. Do the research. Reach out to family and friends. It's unbelievable how much love and support you receive and it does help!
I'm not big on drugs (I rarely take even an advil) but when you get so anxiety ridden go for help! I now take on a "as needed" basis klonopin (5mg & I cut it in half) for anxiety and ambien (5mg) for when I can't sleep.
I also have posted notes all over the house with saying's such as "positive thoughts", "best results". It may be silly but they work for me.
I'm feeling much better !
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Hi Anna, it really sounds as if you are doing the right things with all your research!
I think you're right about the neurosurgeon, I was told after surgery by my intern doc how Dr. Schwartz tediously removed the sticky from radiation tumor from my facial nerve, worse because of the failed radiation. He left a 1% piece of the tumor on the nerve rather than cutting it, I was way ok with this.
There were so many docs involved throughout the surgery and recovery! After surgery, the docs had fellows to make the rounds, and some of them did also. But it was clear who was running the show. I guess this is really common, for docs and their "fellows". I had one that was SO great, young Dr. Goddard. Very patient, often and listened a lot....to the point he was telling me who some of the other docs were that came by and I didn't recognise or was kinda out of it on morphine.
I'm not big on drugs at all, they force many down you the first few days after surgery. And then I got off pain pills very soon, I think day 4. Only rarely do I take Tylenol or Advil type products. I did start taking ambien after taking steroids for 3 days after surgery, the steroids were the hardest for me.
best wishes, Melinda
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Hi Anna,
Not to muddy the waters, but a patient from our local ANA group just had a retrosigmoid with Dr. Brackmann at House. He is doing great, big smile and no headaches. Not sure where he is on hearing. Maybe you can twist Dr. Brackmann's arm and get a retro from him. :)
You sure sound like you are feeling better about the whole thing. Best wishes as you close in on the final decision.
Steve
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I'm planning on having the surgery in January (after the holidays) but I was thinking of going out to California in October and making an appointment with Dr. Brackmann. I really want to avoid the translab approach (cutting balance nerve/SSD) but both Brackmann and Friedman have recommended it. Ugh....one more consultation and it's decision time
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Hi Annac,
I wish you luck with your decision making process. Just wanted to add my .02 cents in here. I had the same concerns as you regarding the Retro surgery, and my (very competent) neurosurgeon answered EXACTLY the same as yours. In the wrong hands, headaches can occur, and usually b/c of bone dust. They've made advances in that, and he said his patients don't have headaches. Like you said, it can still happen. Feels better knowing it isn't the 'norm' though!
Good luck.
Adrienne
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Hi Adrienne,
Thanks for your comment and it's making my decision lean more toward the retro sig approach. Dr. Post did say in the past 10 years major advances have been made with the retrosig approach and headaches are not seen as a common side effect. Dr. Post exudes confidence and when I mentioned I was going to see Dr. Roland this week he softly said "yes of course but he is an ENT". The way he said he let me know.... but I am the neurosurgeon.
Dr. Friedman was very adamant about not doing the retrosig and actually called it "more dangerous" because it was intracranial. Both Doctors did say that more recently neurosurgeons are of the opinion to leave a thin layer or "rind" of the tumor attached to the facial nerve in order to preserve it. Eventually the remainder of the tumor could die off or it could grow again. Either way I'll take my chances and save my facial nerve.
That being said if I go for the translab approach, tumor is removed, my balance nerve is cut and my hearing is lost and they have to harvest some fat from my abdomen to fill in some kind of void.
If I go with the Retrosig approach my poor hearing is still saved and I have to have extreme confidence in my neurosurgeon that will leave with a better quality of life which what I'm trying to preserve.
What my husband and I seem to have come upon is the great divide and the Titans are locking horns as to which approach to use. I may be wrong but it seems the majority of posts here that have gone to HEI have had the translab approach or the Middle Fossa.
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Anna .....
Most of us on this Forum have felt the decision-making process of this whole journey is one of the worst parts of the whole thing. You are doing the right thing to explore your options. At some point in time you will have that "gut feeling" that this is the right decision. No one can or should try to push you towards any one type of treatment, even medical professionals.
That being said, there are many of us on this Forum who have had retrosigmoid approach surgeries with good results and no regrets ..... I being one. I do not think you should dismiss this as an option because many of the current posters have gone to House for translab or middle fossa. Actually several have had retrosigmoid at House recently, as well.
You need to do what is right for you, based on your history of radiation, the size of your tumor, the location of your tumor, and your current symptoms. Do not be in a big rush ...... maybe stepping back and doing other things for a while will clarify it for you. Then listen to your inner self and it will become clear.
Thoughts and prayers.
Clarice
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The whole point of surgical resection (or any other type of treatment, for that matter) is to keep the tumor from destroying nerve function.
TW,
I thought the whole point was to keep you alive for the long term? ;)
Anna, I have no words of wisdom to offer - you've already gotten a bunch - but just wanted to welcome you (a little late... :-[). Hopefully you'll be like many of us were and get that gut feeling to help you decide what treatment to go with. Good luck!
Lori
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Hi Anna,
I know exactly what your feeling, just went thru it and would have gone retro but too scared for the facial nerve. I just wanted to express that and clarify my understanding (other please chime in if incorrect!) of the different approaches.
The translab approach gives the surgeon the best view/angles for preserving the facial nerve.
I think the balance nerve has the same risk either approach - I was told my tumor was on it so it was completely cut but didn't effect me too much as I had already started compensating for it on the other side.
Yes, its true they cut some fat from my abdomen to fill in the skull void, and use titanium sheet over it. I suspect they have to do something similar for the void in Retro.
The Retrosig approach is the only option for saving hearing (mid fossa for small tumors) however, often times the chances are slim.
The primary goal is to remove the tumor as much as possible, and in your case, as in mine, you probably don't want to be radiated again.
Melinda
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Anna ~
To elaborate on Melindas's comments: I underwent a partial tumor resection using the retrosigmoid approach. This surgical approach has an (approximately) 60% chance of preserving hearing. My hearing nerve was fatally compromised prior to the discovery of my AN so the surgeon used 'retro' simply as the best way to reach the tumor as hearing retention was not an issue. The Retrosigmoid Approach involves a slight retraction of the cerebellum, which is a bit risky - but necessary. My neurosurgeon did move my cerebellum (in his words: "just a little") but I suffered no headaches or other ramifications from the procedure. Pre-op, when I brought up the question of developing post-op headaches, my neurosurgeon (with 30+ years experience surgically removing ANs) literally scoffed at the idea. He flatly stated - in his words - "my AN surgical patients don't get headaches". He was right - I didn't. After this 'de-bulking' procedure, which was highly successful (no complications) I underwent 26-sessions of FSR treatments to irradiate and destroy the remaining tumor's DNA. That was also successful and somewhat uneventful. I do have a titanium plate in my skull - but no 'belly fat'. Frankly, I didn't have any belly fat to contribute (I had lost over 30 pounds - due to the AN-induced loss of taste - prior to the surgery and was borderline underweight) and apparently, my neurosurgeon didn't consider it necessary because he didn't take fat from anywhere else and never mentioned it during my follow-up visits. I'm fine now. My balance is quite serviceable and I've fully adjusted to being SSD. I believe the retrosigmoid surgical approach is commonly used for good reason but every AN patient is different and every doctor views things slightly differently, so what was great for me may not be a good procedure for another AN patient. I'm sure the doctors that perform your AN removal surgery will choose the very best surgical approach for your situation.
Jim
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Melinda,
My surgeon told me that he prefers to do the Retro b/c of the view he gets, and it isn't more likely to result in facial paralysis (no more risk than the others). Also, there is no fat harvested, I was told that a 1 1/4-1 1/2" square piece of skull was completely removed, but then put back on with bone cement after the procedure to protect the opening.
Jim,
My surgeon told me that there was only a 25% chance of retaining hearing with the retrosigmoid. I'm guessing size and placement have a lot to do with it. In any case, he set me up for the fact that I would probably come out of it without hearing-that it wasn't their primary goal. Primary goal was to protect the facial nerve, and second-to remove all of the tumor.
I went into my neurosurgeon's office prepared to ask for the Translab procedure because of everything I had read on the net (and some here). He talked me out of it based on some misconceptions I had. I guess the surgery has come a long way (that, and it was his comfort to do retrosigmoid and I truly believe whenever possible that you should go with the one they are most confident with and do the most often). I'm so glad he did the retro on me, given the way it turned out. I'm very thankful for the hearing I retained (even though I would have given it up in a heartbeat if it meant lower probability of facial paralysis).
Adrienne ~
Because hearing preservation was not an issue for me at that point, my neurosurgeon was focused on avoiding facial paralysis . Thankfully, he was completely successful. Jim
Annac-It's nice that you have others that have gone before you with the same type of procedure. I hope you get some clarity on your own decision soon.
Adrienne
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I don't know whether I'm the only one who has noticed that the "fat harvest" seems to be appearing on this thread as one of the factors to consider when deciding, if you have an option, which surgical procedure to select. I can only speak for myself, but the "fat harvest" is very, very insignificant in the overall scheme of things. You'll end up with a fairly small incision on your abdomen ... and that's about it. Please don't let that aspect of the surgery be a factor in your decision-making process!!
Catherine (JerseyGirl 2)
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My surgeon told me that there was only a 25% chance of retaining hearing with the retrosigmoid. I'm guessing size and placement have a lot to do with it.
Size and location do play a role. Another factor is the condition of the hearing nerve going in to surgery. When I was diagnosed, I strongly considered surgery instead of radiation (although I ultimately chose the latter, in the form of CK). Dr. Derald Brackmann ordered an ABR (auditory brainstem response) test for me. Although my hearing was relatively good at the time, my ABR test results were bad. Four of the five "nodes" showed very low-amplitude signals; in plain English: my hearing nerve function was hanging on by a thread. From this, Dr. Brackmann concluded that my hearing nerve would not functionally survive the trauma of a retrosigmoid approach and that I would emerge from surgery deaf on my AN side.
As an aside: The size and location of my tumor ruled out middle-fossa approach. So, as translab always results in SSD, I was facing SSD with any surgical approach. This led me to consider radiation (which I had formerly ruled out due to uninformed bias, meaning I hadn't researched that option at all at the time and just didn't like the idea of irradiating my brain). Because hearing preservation was so important to me, Dr. Brackmann recommended I have radiosurgery. His recommendation was GK, but I chose CK after researching the differences between the two (very similar) types of radiation therapies.
Best wishes,
TW
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I don't know whether I'm the only one who has noticed that the "fat harvest" seems to be appearing on this thread as one of the factors to consider when deciding, if you have an option, which surgical procedure to select. I can only speak for myself, but the "fat harvest" is very, very insignificant in the overall scheme of things. You'll end up with a fairly small incision on your abdomen ... and that's about it. Please don't let that aspect of the surgery be a factor in your decision-making process!!
Excellent point, Catherine! I didn't have a choice when it came to the fat graft - but it definitely was no big deal.
Jan
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Hi Anna! I`m in the NYC area also. Presently W+W with my Dr`s Roland + Golfinos. At first I saw Roland which then recomended Golfinos for his opinion. I was real comfortable with them laying out all my options. They are a team! Best Wishes, Mickey
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This "fat harvest" is not in the slightest a decision maker. In fact, getting rid of any fat from my abdomen would be a plus! ;)
I don't know whether I'm the only one who has noticed that the "fat harvest" seems to be appearing on this thread as one of the factors to consider when deciding, if you have an option, which surgical procedure to select. I can only speak for myself, but the "fat harvest" is very, very insignificant in the overall scheme of things. You'll end up with a fairly small incision on your abdomen ... and that's about it. Please don't let that aspect of the surgery be a factor in your decision-making process!!
Catherine (JerseyGirl 2)
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....Hello:
I had the same size and opted for surgery as I was told after 5 opinions that getting rid of the thing was best for my own mental health. I was also 55 then.
In my case I went to Dr. Brackman, was out of the hospital on the 5th day, and stayed at the New Otani Hotel to recover alone!!! I took a spa day at Ole Henrikson of Denmark, a day trip to see all of Hollywood and was back home on day 8 and back to work on day 14. I am a medical professional and cannot speak more highly of anyone than Dr. Brackman.
I had Anthem/BC and out there it is called something else but my insurance covered it and he took whatever they paid.
Because these are so rare, I agree that you do need someone who has experience and he told me he does 3 per day. He also teaches and the neuro was Dr. Schwartz,
send him your actual film from radiology, not the disk, he will review and call you...be prepared that it is usually in the evening due to time delay...depending where you live.
My personal opinion is to get on with your life and be rid of it...
You should do what he advises. I also went to Yale, NYU and spoke with another Dr. King in LA...Dr.Brackman just relaxed me and had the most experience...of those I encountered.
I am not 58, have had no problems, no paralysis,and he did not shave my head....huge relief per my request, but most important to me was knowing it was finally out...not one Dr. recommended radiation for my age.
Really, other than getting used to the loss on one side which I only notice when driving Thur a bank drive up or trying to write with my right hand and talk on the phone with my left ear (which I can't) I am OK....
O really look better people say and I think just knowing it is gone relaxed me.
I know the never say never, but we could get hit crossing the street too.
I don't think about it anymore and the freaking out stopped once it was gone.
I gained an appreciation of life, re evaluated and am working in the US, and Paris, travel as much as possible and just want to downsize and enjoy what life I have.
I asked a 95 yr old patient of mine what she would change or advise me on life.
She said worrry is a waste of time and changes nothing and men come and go as do friends....to live life and enjoy it.
Best of Luck to You.
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PS
APOLOGIES FOR MY TYPOS...
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La-Di-Da,
Love your attitude. I have adopted the same after the top five stressors in one year three years ago. Also, 58, but only for two more months. Headed off on a trip in a week. Life is grand. Enjoy what's left.
Nancy
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Ladida -
Welcome to the forum! I'll excuse your typos if you excuse mine! :D
Not questioning your doctor's stats, but is it really possible to do 3 AN surgeries in one day? My surgery took 9 hours - I realize some are shorter, many are longer, so one would have to assume that this doctor never eats or sleeps! Wow - and I thought I had no life! :D
Lori
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I was wondering that too...even on an average - that is an almost impossible number...my surgery was 14 hours... ???
K ???
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If he does 3 a day, not sure I would want to be #3. :-\ Even at 5 hours, which mine was and is relatively short for AN surgeries, that would translate to 15 hours of tedious operating. Unless, of course, someone else is doing the opening and closing. Then I suppose it would be feasible.
Clarice
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My guess is he is in and out of ORs with the neurotology team doing their part while he's off in another skull and then another and back and forth etc etc. Get my drift? ;D
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Yeah, definitely get your drift, but, I don't know. I think I'd prefer to have his undivided attention when his mitts are inside my skull! Sometimes I don't like to share! ;)
Lori
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I too have to respectfully question the claim of 3 AN surgeries per day. Are you sure that isn't per week?
My AN was considered medium size and it took my team of doctors (neurosurgeon and neurotologist) 7 1/2 hours to remove it. Even if we're talking 3 4-hour surgeries per day that would be 12 hours out of 24 spent performing surgery ???
AN surgery is very slow, close, tedious work done through a microscope - which is why lots of docs operate as a team; they like to take breaks and relieve eye strain, etc.
Lori and I are a lot alike - I prefer undivided attention when it comes to brain surgery, also.
Jan
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Hello to All,
I meant that House Ear Institute does an average of 3 per day.
I can vouch for that...we were all in the same area....there are 5 Dr's on staff I believe.
I twisted my own words.
My surgery was 7 hours long and expected to be 3 - 4.
In my case he saw me at 6 am and had a surgery after mine and then was leaving for Japan to train others/
He is not easy to get,
Best to get a date if that is where you want to go once you have him read your MRI.
My info was that the younger you are the less they want to radiation.
I was told once they do that if you really need it removed later on they have to cut back beyond the scar tissue that forms and that leaves you with more facial damage.
For me that was a deciding factor.
I have no facial damage at all.
I do understand each of you have to make a decision you are comfortable with and mine was to go with the most experienced which was House Ear Institute.
Dr Brackman was the only physician I would take because we had spoken on the phone at length and I felt very relaxed by the time I arrived.
I think Blue Cross is Well Point by the way in California.
Hope I have offered some support.
Good Luck to all once again.
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Anna,
I sent you a couple of private messages about my experience with Dr. Post in response to your inquiry. Sorry I didn't get back to you sooner, but I haven't been checking in here as often.
For everyone else.
I had retro with Dr Post. 11 months ago.
I still have very useful hearing (I'd estimate 85%-90%). The loss is not even noticeable except when I use headphones or the telephone.
I have no facial nerve problems.
I've had a few very mild headaches over the last year, but I'm not even sure they are surgery related because I had a few colds and sinus problems this year. In any event, they are a non factor they've been so mild and infrequent . We discussed headaches prior to surgery and he told me about bone dust causing irritation. He said he developed a technique to eliminate that.
He cut a hole in my head "about the size of a half dollar". There is a titanium mesh and acrylic plate in place of the skull. There was no fat harvesting surgery etc...
My only problems have been dizziness, balance, wonky head, waviness in my head etc... that is slowly diminishing with time (I'm 11 months post op now). In fact, in the last 4-6 weeks, I have been experiencing glimpses of normalcy. There are days when I stand and feel 100% normal and when I walk I feel well over 90%. Only when I run, go and up and down stairs, and when I
I'm tired do I really notice a problem.
All in all I wold say I am extremely lucky and that my experience with Dr. Post was very good.
Wayne
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Wayne,
I did get your messages and I want to thank you for sharing your experience with Dr. Post. I"m happy you are progressing and I wish you the best!
In the last 2 weeks I've had consultations with a few other doctors and it seems Dr. Post and Dr. Bederson (both at Mt Sinai) are the only ones recommending the retrosigmoid approach for me. I've found out they offer this approach because it is their speciality and what they do best. This approach was attractive to me because it is the only option of preserving any hearing, unfortunately my hearing is not very good (can't use phone on AN side). They both said the would "try" to save any hearing but chances were very slim and their main concern was to preserve my facial nerve.
I agree Dr. Post comes off very knowledgeable and very confident and I was very close in choosing him but I think realistically & sadly I'm going to have to go with the translab approach. I'm trying to come to terms that what ever hearing I have now will be gone but my chances of having NO facial nerve damage is very high (95%) and was told there are less complications and in the end and that is the most important thing to me.
I did meet with Dr. Golfinos yesterday and I think he is going to be the neurosurgeon I'll be using. He works with Dr. Roland and I really liked him as well.
Having the operation in NYC and close to home is also a comfort.
I just have to get out of this blue funk about losing my hearing.
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It's perfectly normal to feel sad over the loss of part of yourself.
I had perfect hearing in my AN ear the day I went into the OR, and no hearing at all when I came out. It was a sacrifice I was willing to make in an effort to save my facial nerve. While I had a difficult time adjusting to the sudden loss of hearing, I have adjusted and manage just fine. I have a BAHA also, which I love, but I honestly have to say I have adjusted well enough that I could live without it if I had to.
If the hearing you have at this point is not very useful, I would opt for saving the facial nerve if I were you. I know it's a tough call.
Good luck!
Lori
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Thanks Lori for your support. I've read a lot of posts regarding hearing aid options here on the forum and it's made me feel much better.
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It's got a few benefits - nice and quiet when you sleep on your good ear, easier to block out unwanted noises (kids, spouses, neighbors, etc), and you have an excuse for "ignoring" people. ;)
Lori
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Anna,
I met with Dr. Galfinos and liked him a lot also. For me, it was practically a coin flip between him and Post because I knew I was going to have retro. Everything I've heard about him has been positive so I think you will be great hands. I understand your choice perfectly. I also understand how you feel about SSD, but there are options like Baha that you can look into after you get past this surgery. You'll be in my prayers.
Wayne
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I meant that House Ear Institute does an average of 3 per day.
Thanks for the clarification - this makes much more sense.
Anna -
Drs. Roland and Golfinos have very good reputations. IMO, you can't go wrong with them.
Feeling blue about losing your hearing is common. I felt that way myself. A BAHA solved that issue for me. It's not for everyone, but I highly recommend that you at least try the demo post op (once your head has healed).
Jan
Hijack alert - Nancy Mc, LOVE the new profile pic ;D
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Anna,
Although I'm glad you've reached your decision regarding treatment, I completely understand your sadness at the thought of losing your hearing in your AN ear. Even though it is minimal now, it is there to some degree. I know that I, and many others, felt very sad at the idea and/or realization that we would be SSD. As Jan and Lori pointed out, it does have some benefits -- my husband's snoring used to wake me up almost every night and now I rarely hear him and he snores VERY loudly. It does also alllow you to ignore someone and pretend you just didn't hear them if you want to. As Jan and Lori also pointed out, BAHA offers a great alternative to being SSD. I've had mine since April and love it.
Best wishes,
Wendy