ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: S. Robin on August 11, 2016, 01:28:51 pm
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My son has a small AN (8.3mm). He has lost his hearing in his left ear. We have seen Dr. Babu at the Michigan Ear Institute. We have also talked with a Dr. at the House Clinic. I am planning to send his records to Dr. Friedman at USC.
Dr. Babu and House have both recommended translab surgery. I want to trust Dr. Babu because I hate the idea of my son having to recover in a hotel room and not at home. I am also concerned about complications down the line and where to go if they occur. If he gets a CSF leak a month after surgery, for example, and we are back home in Michigan I would not want to have to put him on a plane back to CA.
I need to hear from people that have dealt with Dr. Babu and the Michigan Ear Institute. Dr. Babu told us that he does 40 of these surgeries every year.
He has a lot of experience. Please let me know about positives or negatives with Dr. Babu and the MEI.
(I saw Jake's video on You Tube speaking highly of Dr. Babu, he had good results)
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I don't have information about Dr. Babu but here are some links to help facilitate the process of asking the appropriate questions.
The links are from the ANA website and might be easily overlooked. The first one was updated on Aug. 1st. It's a list of questions to ask your doctor.
The second one is an updated article by Dr. Friedman about being newly diagnosed and feeling overwhelmed with the research process. Both are excellent resources.
It's important to get statistics from your doctor regarding the surgical outcomes. You have to ask very specific questions.
It's better to take your time than to end up with complications. There can be tough complications even at the best institutions.
Sorry that your son has already lost his hearing. That's a tough break for a 22 year old.
I know what you mean about traveling. It's a whole process in and of itself. I would rather be released from the hospital and go straight home to my own couch and my own bed. The outcome of the surgery is the most important thing, regardless of the issue of traveling.
https://www.anausa.org/pretreatment/questions-for-your-physician
https://www.anausa.org/component/content/article?layout=edit&id=615
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S. Robin,
I don't have any info on Dr. Badu, but I would highly recommend you go where your son will get the best treatment and results, even if that means staying away from home for a couple of weeks. Although it may be inconvenient and not as comfortable, the result of the surgery will impact the rest of your son's life.
If you do travel for treatment, it would be important to line up a local ENT to take care of any complications that occurred once home. This way there is no need to travel again. This is exactly what I had done and my local ENT had no issue with it.
Hopefully, others will comment on their experience with Dr. Badu.
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I do not know Dr Babu. 40/year is pretty good, although the very top do more. You might ask him how many he has done overall, not just his current per year. Another way to find about Dr Babu is to search for his name using the search on the upper right corner. It will generate all the posts with his name. House is top notch and Friedman is also. Good to ask each doctor about their track record also (most don't give it, but some do), and chances for facial paralysis under their care.
fyi, I did travel to House from NY with no issues. The Seton visitor center was great - quiet and clean. And you have the camaraderie of fellow AN patients, which was wonderful. The whole stay out there is generally 10 days, including 3-4 in hospital. Then 6 weeks at home.
The vast majority of CSF leaks occur right after surgery in the hospital. That is why they keep you in CA for a few days to a week after you get out of the hospital, to make sure there is no issue with CSF. This protocol translates to a very, very low incidence of CSF leaks after leaving CA. Not zero, but very, very, very, very low.
Best of luck and let us know what you decide.
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I found 16 posts by searching Babu. Let me know if you have any issues finding them.
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Thank you so much for the replies to my post. I am thankful that my son's tumor is small and we have time to consider the options. From what I read I think the doctor we choose can really have an effect on the outcome.
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v357139, I can't find the 16 posts about Dr Babu when I search the ANA. Can you give me some help?
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I'm hoping to catch up with jtwarrin5. I know he went to Dr. Babu.
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To find the posts on Dr. Babu, go to the link below (which is the main page for this forum) and search for "Babu" in the Search field.
http://www.anausa.org/smf/index.php
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thanks upstateny, I found the links and have sent them a PM
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Thank you so much to Ewchisek, and JTwarrin5 for your encouraging private messages. You have been so kind and helpful!
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Is the only option being presented translab surgery ? I asked because his tumor is small and even though he has already lost his hearing there is so much more to loose with surgery (verses gamma knife).
I was 23 when I had my first surgery, lost the hearing yes but also so much more (facial nerve/balance nerve) not to mention the fact recovery time from the surgery itself.Personally I didn't have any options but hey if there is options they should be considered.
Kathleen
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Kathleen_Mc,
Three Neurologist have all agreed that radiation should not be an option for Jon because he is so young. The House Clinic said, "he is too young to carry the burden of radiation" around in his body for years to come. That being said, nerve damage is our biggest concern with surgery. I'm told that translab surgery (compared to the other micro surgery options) offers the least risk to the important cranial nerve structures. If he had his hearing we would look at options to preserve hearing. But his hearing is already gone.
When we first learned about Jon's tumor we were hoping that radiation would be the answer. It is clearly the least invasive. We are so nervous about it all. We want to make the right decision. I wish it was a viable option.
One minute I think we should leave it in there and wait to see if it grows. The next I think we need to go ahead with the surgery and get it out. He will never be stronger and healthier than he is now to go through it. (Everyone tells us that eventually the tumor will grow and have to come out.)
Jon proposed to his girlfriend a few days ago. They are excited to make plans to start a life together. If we wait, which no Dr. has advised, and he graduates from college, gets a full-time job, gets married and starts a family, his life will be so much more complicated if he needs to have it out then because it has grown and started to cause more problems.
We are so torn, it is such a big decision, to the doctors it is straight forward and easy, they all agree he needs to have it out with translab surgery. But they are not the ones dealing with the aftermath.
Thank you for sharing your concerns. Our faith is so important to us and we are praying and learning as much as we can as we proceed carefully through the process.
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Robin,
It is a difficult decision, no doubt. I went almost a year before I could decide and had a lot of anxiety. So I know how you feel, especially since this is your son. Please keep in mind that with a very experienced surgical team, he has a great chance. That is all you can ask. I had a 3.5cm removed via translab and no permanent issues. There are many more good outcomes than bad.
How does your son feel about it all?
Rich
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Kathleen_Mc,
Three Neurologist have all agreed that radiation should not be an option for Jon because he is so young. The House Clinic said, "he is too young to carry the burden of radiation" around in his body for years to come. That being said, nerve damage is our biggest concern with surgery.
What does "too young to carry the burden of radiation" mean? Are they implying your son will develop cancer if he has radiation treatment?
Dr. Chang from Stanford has treated teenagers successfully according to posts on this board.
I agree with Kathleen_Mc, just because there are some of do well with microsurgery, there are also some of do not do well. It's a major surgery and the possible complications should never be minimized.
I think you owe it to your son, at a minimum, to consult with a few top radiation specialists in the USA in order to get a more balanced opinion. What do you have to lose at this point?
I would certainly contact as many radiation specialist throughout the country as possible to find out their opinion regarding age as a factor in the year 2016 of radiation treatment.
In a previous post, I listed some of the top places for radiosurgery. I would simply mail a copy of your most recent MRI and medical history for their free consultation over the phone.
Dr. Lunsford - Gamma Knife at UPMC Pittsburgh, PA
Dr. Chang - Cyber Knife at Stanford, CA
Dr. Kondziolka - New Jersey, Manhattan, New York
Dr. Sheehan - Univ. Virginia - Gamma Knife - UVA
Dr. Schwartz - House Ear Clinic - Los Angeles, CA
Dr. Friedman - Keck Univ- California
Stephen Tatter and Michael Chan - Wake Forest University North Carolina - Gamma Knife
Clinton A. Medbery, III, M.D. Southwest Radiation Oncology - Oklahoma
And perhaps your local Gamma Knife and Cyber Knife specialists
Whatever decision you make, I wish you well in your journey. A fully informed decision is the best one you can make.
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Thank you mcrue, I think I will do that.
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This is a huge decision. I will say that with a lot of research and consulting different surgeons, trans-lab is considered the best approach to save the facial nerve and offers the best outcome for those that also have developed tinnitus. That being said, Jon is quite young and willhave a much easier time with recovery. I do know MEI is considered one of the best around here for the AN.
I also answered your email Sheila. It is awaiting approval to be posted.
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You certainly have nothing to lose by doing it. I had three doctors advise me to go for microsurgery and then Dr Kondziolka told me I was a good candidate for radiosurgery. Then I had to decide which made the most sense for me. So it is best to talk to very experienced radiosurgeons if you want to know about radiosurgery. And very experienced microsurgeons if you want to know about microsurgery. You'll need to hear them out and then you and your son decide which makes the most sense for him. Each doctor will have an opinion based on his skill in a particular area, and they will not always agree with each other. If you are a member, this website also discusses the pros and cons of microsurgery vs radiosurgery. Since radiosurgery has not been around as long as microsurgery, there are not alot medical studies documenting the long term effects of radiosurgery.
Let us know if there is anything you need help finding.
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S. Robin
How is your son feeling about all of this?
Does he want to look at the option of gamma knife ?
I can tell you as someone who started this journey at the age of 23 I so wish I had the option......if gamma knife had been an option for me that is the way I would have went the first time around.( was offered gamma for the regrowth I developed but all the nerves were severed the first time around so what's the point).
There are people who just want to get the thing out and that's ok too!
Kathleen
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Kathleen - I am very sorry that you have had a very difficult outcome, especially when you were young at the time of surgery. But I think we need to give some context here for this concerned mother - surgical techniques have improved a lot, and nerve monitoring is now standard practice to avoid severing or weakening the facial nerve. The chances of having the facial nerve severed are now less than 1%. The chances of temporary facial weakness, which can last for 6-12 months, is about 5% - these are the stats from current studies of outcomes; very important to go to a high volume center for the surgery - not someone who does a few a year.
I just had surgery and I had zero issues with face / tears / tongue - I did lose hearing and I am doing therapy to restore my balance but I am very pleased with my outcome, and glad it's gone for good, no lifetime of MRIs ahead. I don't want this mother & son to worry that the risk of facial nerve damage is "high" when these days, it is "very low". Hearing nerve is more fragile (50/50 chance you lose hearing no matter what you do). Facial nerve is apparently pretty robust.
I get your point though, that facial paralysis is very difficult and it is still a potential with any surgical approach.
S - if your son moves ahead with surgery - i would say, pick best possible docs based on experience, outcomes; and then be very conservative with the advice of what NOT to do after, so you can avoid complications. For example I was told to prop my head up while sleeping for one week - I am now four weeks post op and still propping up my head; I am not lifting anything heavy; I am not bending my head lower than heart - supposedly I can now but I don't want to or need to (I bend my knees and reach down instead if I need to). I want to allow at least 12 weeks for the dura to heal before any bending, and more like 6 months before I start any weight machines etc in the gym. the best thing post op is lots of walking, then add some upright cardio (treadmill, elliptical, bikes etc). no swimming til the scab is gone (else infection risk), supposedly takes like 10 weeks for the incision to fully heal. sorry too much coffee - i am typing like a mad man!
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Citiview, your numbers look about right for Middle Fossa being that there is more risk to the facial nerve. For facial nerve preservation, translab is the best method. This assumes hearing preservation is not needed.
To put this into better perspective, the outcomes I received from Dr. Schwartz at the House Clinic for ANs <2cm using the translab method are shown below. The population included 1% with HB 5 or 6 prior to surgery, 2% with a facial schwannoma, and 1 % with a combined vestibular/facial schwannoma, which is more than likely where the HB2 and HB3 results came from. This puts his results at or above that of the top radiation surgeons, which to me is extremely impressive.
98.2% HB 1 (normal)
0.9% HB 2 (slight weakness noticeable on close inspection)
0.9% HB 3 (obvious weakness, but not disfiguring)
0% less than HB3
Drs. Friedman and Giannotta (USC) quoted a <1% chance of any long term facial nerve weakness for ANs <2cm using the translab method, but gave no where near the specifics that Dr. Schwartz did.
My hometown doctors only do 10 per year, which I believe was exaggerated, so wouldn't provide a percentage other than saying my recovery could easily be 6 months or longer. My local ENT was pretty impressed when I stopped by for a live visit just 2 weeks after surgery at the House to let him know how everything went.
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This is a huge decision. I will say that with a lot of research and consulting different surgeons, trans-lab is considered the best approach to save the facial nerve and offers the best outcome for those that also have developed tinnitus. That being said, Jon is quite young and willhave a much easier time with recovery. I do know MEI is considered one of the best around here for the AN.
I also answered your email Sheila. It is awaiting approval to be posted.
PranaRN,
How is your tinnitus?
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I can tell you as someone who started this journey at the age of 23 I so wish I had the option......if gamma knife had been an option for me that is the way I would have went the first time around.
Aww. Thanks for sharing.
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very important to go to a high volume center for the surgery - not someone who does a few a year.
Excellent facts.
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Citiview,
You're absolutely right. All the trade-offs and risks are what make the decision so difficult. Each person has their own goals, risk level, and situation.
I too expect to live another few decades, so was skeptical about radiation due to lack of long term data. I figure if my AN grows back 10 or 20 years from now, I could then take the radiation path being that I probably wouldn't tolerate surgery so well at that age. Who knows, genetic research may provide new ways of treating ANs in the near future as well.
I posted the translab data because the original poster is considering translab for her son. Hopefully, it helps put some data around what the expected results can be using this surgical method.
You are very lucky to have a great physician in your hometown.
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Thank you so much for the replies to my post. I am thankful that my son's tumor is small and we have time to consider the options. From what I read I think the doctor we choose can really have an effect on the outcome.
Please do not wait. My husband had balance issues earlier this year, things were "off" and we had no idea why. We thought he had just been ill in April with a virus (chills and fever nothing else) and we were so not expecting that one day just sitting in the chair watching TV he would experience Sudden Hearing Loss. Within an hour I had him at an ENT and she knew immediately to do and MRI. This was June 15th. A few days later we found ourselves at the House Clinic with an MRI showing a 1.7 tumor. Balance was already gone and so sadly was the hearing.
Today he is home from having it totally removed on Monday. In surgery for 8.5 hours. The grief and devastation over losing his hearing in that ear is the worst part of the entire treatment.
I stayed at Seton - fortunately it is connected to the hospital and seriously you can toss a football from one building to the next. I was able to stay in his room all night after he was out of ICU and while he was in ICU I was able to just go from Seton to the hospital every hour and check on him. My 23 year old daughter and my in-laws stayed in the same room. It is only $85 a night and well worth it.
The Doctors at House not only know what they are doing, they do it extremely well. The Medical Doctor they use as part of their team is on the 2nd floor of their building. The OR and Waiting Rooms and the Private rooms are all on the 6th floor. They use them to the point of where the nurses and orderlies area very familiar with every step of the recovery process. It is a true team of not just surgeons but staff at the hospital.
Seton is NOT a hotel. Instead it is a Guest Quarters place with a family TV room (My girl and I stayed up all night in their watching the olympics, eating, and going back and forth to hospital). They have a great kitchen and breakfast area. It is homey, comfortable, and we only saw 1 other family in the hallways - a young 20 year old who had his removed the prior week.
I strongly urge you to use the doctors who perform these on a regular routine basis.
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Wow. As you can see there are lots of experiences. I'll share mine. Don't fret on the surgery type such as translab / retro etc. The surgeon will make the best decision based on your tumor location. In my case, I had a 4.5 cm tumor and loss my facial nerve due to the excessive vascularity of the tumor and my facial nerve was extremely weakened. I had a modified retro with a 5 cm hole to access the tumor.
You sons tumor is smaller. Also, the stats are brutal. Due to the "exclusivity" of our club, it's difficult to rely on the stats.
If my tumor was smaller and a candidate, radiation was about weighing the chance the tumor may regrow after radiation treatment and the tumor may be 'stickier" for a future more complicated surgery. No easy answer and both have the full range of pros and cons. Being on this forum for some time, you will also see complications with radiation and surgery. Being younger your son should recover quicker from either approach, but the more "popular" approach for a young adult is surgery or watch and wait.
I also agree the CSF leaks typically occur with the first 1-2 weeks or days from surgery. No heavy lifting and have "gentle" trips to the bathroom.. Personally I would not have this as a factor.
In the end your son's tumor is smaller and you've already come to grips with the hearing loss. Stats aside, you should expect to have a great outcome. I guess if you get facial paralysis, it no longer matters if you had a 1% or 30% chance of facial paralysis. Basically, the translab approach was explained to me as better option since it provides early recognition of the facial nerve so it's not accidentally cut. However at the major facilities I haven't heard of this scenario. The normal options are the facial nerve was weekend due to pulling and scraping the tumor or iny case a conscious decision was made to cut the nerve due to tumor bleeding.
I know it's a tough decision, but your son will be OK. The data and options in this process are brutal.
My two cents, if you can afford it, I would go to the surgeon and hospital with the most experience..."house". (Btw I went to Hopkins and loved the experience)
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Thank you for all the information from many sources. It has all been very helpful. This site has been a gold mine. I appreciate ALL of you very much that took the time to post.
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Happy Labor Day!
As a general rule, I've seen time-and-time again where Acoustic Neuroma patients who've had successful radiation treatment will tend to recommend radiation treatment, while AN patients who've had successful microsurgery will tend to recommend microsurgery. It's human nature.
Same with hospitals and physicians. If a doctor only performs microsurgery for a living, then it's only natural for him to tend to recommend microsurgery. After all, it's what he's trained to do and it's what he's comfortable doing. Likewise with radiation. It's the same situation. It's only natural that people will have a bias.
For me, I'm biased towards radiation. Dr. Sheehan successfully radiated my 1.8 cm Acoustic Neuroma without cracking my skull open. I think that's amazing. I've researched the pros-and-cons online for 8 months day-and-night before I made the decision. I think it's a crime to have microsurgery if an AN is under 1cm and is ideally located, but then again, I am not doctor and that is purely my opinion. Like everyone, I have my bias.
Dr. Michael Seidman, a prominent microsurgeon who spoke at my local ANA support group meeting last October, said he wouldn't even let his own adult son have radiation treatment unless it was clearly under 1cm. In Dr. Seidman's opinion, any Acoustic Neuroma over 1cm should be surgically removed unless you're very elderly or some other extenuating circumstance.
Keep in mind, there have been several successful radiation treatments for Acoustic Neuromas 3.5 cm and under. It all depends on who you talk to, and what statistics you follow, and how you interpret those statistics.
Many doctors who specialize in the same field will disagree strongly on the proper course of treatment. For example, my Acoustic Neuroma was fast growing. 4-out-of-5 radiation specialists highly recommended radiation for me; however, one world-renowned surgeon was strongly against radiation treatment in favor of microsurgery.
A benign Acoustic Neuroma that continues to grow is just as deadly if it's untreated. As far as age, I would consult with the radiation specialists They have treated teenagers. I've even seen little kids successfully treated with Proton Beam therapy. Get the facts from the experts and the stats. Regardless which treatment plan you select, you will likely have to monitor the results for the rest of your life in some capacity with lifelong MRI's. There are unsuccessful radiation treatments, just like there are tumors that unfortunately grow back after they "got it all" with surgery.
Keep in mind anyone can "cheerlead" or "sugarcoat" a treatment plan, but at the end of the day the very real possibility of serious lifelong complications do exist. The AN patient is the one that has to live with the consequences. There are no "do overs."
Supporting people with facts and statistics has its place; however, I can't stress enough how important it is to find the most highly qualified team of doctors who specifically treat Acoustic Neuromas and who work at the highest volume "centers-of-excellence" for Acoustic Neuromas who offer the highest success rates. I believe I paraphrased the ANA motto, which says a lot.
The Lasik surgery was a great example, as well as the selecting a qualified auto mechanic example that was featured in the ANA Notes newsletter. Highest volume. Highest success rates. Highest qualifications (specifically regarding Acoustic Neuromas).
Faith and positive thinking are hot topics. If someone is an atheist, do they have a less successful outcome? I think it's fantastic to question your team of doctors until they can't take it anymore. I wouldn't want to blindly put my trust and faith in my doctor. For example, look at Dr. Hrayr Shahinian who just recently had his license revoked. It's good to question authority.
There are no crystal balls. Even the very best surgeon in the world will likely tell you that he too will cut future facial nerves. It's inevitable. Even if the stats/risk are in your favor and under 5% , it's 100% if it happens to you.
The decision-making process is one of the hardest times to go through. Best wishes and good luck in your search.
Warm regards.
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Keep in mind anyone can "cheerlead" or "sugarcoat" a treatment plan, but at the end of the day the very real possibility of serious lifelong complications do exist. The AN patient is the one that has to live with the consequences. There are no "do overs."
<snip>
Supporting people with facts and statistics has its place; however, I can't stress enough how important it is to find the most highly qualified team of doctors who specifically treat Acoustic Neuromas and who work at the highest volume "centers-of-excellence" for Acoustic Neuromas who offer the highest success rates. I believe I paraphrased the ANA motto, which says a lot.
<snip>
Faith and positive thinking are hot topics. If someone is an atheist, do they have a less successful outcome? I think it's fantastic to question your team of doctors until they can't take it anymore. I wouldn't want to blindly put my trust and faith in my doctor.
I feel as if you are suggesting I'm cheerleading and sugarcoating. That was not my intent, nor was it to diminish the seriousness of the decision making process.
My suggestion regarding going with faith was not to trust a higher power, but once the decision is made to have faith that no stone was left unturned in trying to make the decision Then have faith in that process and try not to live in constant fear. It is exhausting as most people facing this decision can attest to.
To suggest that someone not have faith in their physician is interesting.
I'm not anti-radiation treatment. I have already shared why that route was not the right choice for me. My "cheerleading and sugarcoating" was meant as support in that each of us have strengths and once you decide on treatment, whichever route you choose, you will take it a day at a time and have the ability to handle the outcome. I was trying to find a way to alleviate some of her stress.
I am new to the board. I will defer to those with more experience and hold my type of support.
I guess I should've been more clear. I wasn't referring to you, or Citiview, or anyone specifically for that matter. I actually praised (BamaStory) regarding Lasik. I was speaking "in general."
As far as faith is concerned, it was mentioned a couple times in this thread and God knows how many times on this forum. To be more clear, my point was that no one should have blind faith in anyone. They should always question authority until their heart is content. I hope this clarifies my point of view, as my intention wasn't to offend anyone. As I mentioned before ,we're all on the same team even though we may hold passionate views. Regardless to say, as you've read, all points of view are encouraged and open for discussion.
Thank you for giving me the opportunity to clarify. ,As you know, tone, intention, etc. doesn't always translate very well over the internet. To the extent that my comments contributed to any misunderstanding, please forgive me.
All the best.
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One thing that I would like to add to this discussion is that there are multiple studies that show positive attitude directly, positively impacts surgical outcomes as well as outcomes to many medical treatments, including cancer treatments. I see it all the time with patients. I can almost tell you before treatment which patients will not improve, based on their outlook.
Respectfully, we can agree to disagree.
If that concept was true, then people could simply treat their cancer or illness with "positive thinking." I've read too many "horror" stories of scenarios featuring some of the most positive thinking people around who suffered devastating post-op outcomes. It would make me ask "why do bad things happen to such good people."
I think the whole concept of positive thinking regarding outcomes is up for debate with respect to any scientific facts/evidence: http://www.cancer.org/treatment/treatmentsandsideeffects/emotionalsideeffects/attitudes-and-cancer
This is just my humble opinion and is not meant to offend anyone. I submit it in good faith :)
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Thank you Bamastory,
You have been very helpful. Kindness and encouragement go a long way. We are all weighing the options and will each follow the road that our research dictates is best. I have studied and studied the options, receiving your encouragement and validation was just what I needed at just the right moment. Thank you so very much!
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Jon proposed to his girlfriend a few days ago. They are excited to make plans to start a life together. If we wait, which no Dr. has advised, and he graduates from college, gets a full-time job, gets married and starts a family, his life will be so much more complicated if he needs to have it out then because it has grown and started to cause more problems.
S.Robin......One thing for him to seriously consider is having this tumor dealt with before having children. I say this as had I been told BEFORE I got pregnant with my first child that I had regrowth of the tumor that had been removed some 7 years earlier I would have certainly put off starting a family until after I had the regrowth removed.......then have my family AFTER I saw how I felt afterwards. Absolutely anything COULD go wrong when he has surgery, there are some rare cases of horrible outcomes and if he was so unfortunate he might not be able to work anymore, or be the father he wants to be.
Just my two cents
Kathleen
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Thank you Bamastory,
You have been very helpful. Kindness and encouragement go a long way. We are all weighing the options and will each follow the road that our research dictates is best. I have studied and studied the options, receiving your encouragement and validation was just what I needed at just the right moment. Thank you so very much!
S.Robin......One thing for him to seriously consider is having this tumor dealt with before having children. I say this as had I been told BEFORE I got pregnant with my first child that I had regrowth of the tumor that had been removed some 7 years earlier I would have certainly put off starting a family until after I had the regrowth removed.......then have my family AFTER I saw how I felt afterwards. Absolutely anything COULD go wrong when he has surgery, there are some rare cases of horrible outcomes and if he was so unfortunate he might not be able to work anymore, or be the father he wants to be.
Just my two cents
Kathleen
Thank you Kathleen. You have been very helpful. Sometimes the kindest thing you can do for someone is tell them the truth and not sugar coat things. Thank you so very much! I'm sorry your tumor had regrown 7 years after they removed it all with microsurgery. Thank you for sharing your two cents. I agree with you that major brain surgery should never be minimized.
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I have carefully reread this entire post and I don't think there is another way to interpret the "sugarcoating" and now the reference to minimizing major brain surgery to be directed to anyone's post other than mine. This thread is about a Mom whose son is going through a very tough decision making process that we all have faced or are still facing. I tried to give emotional support so that she could step away from that burden 24/7. You don't need to clarify again or state that it is difficult to communicate intent in this type setting. You obviously feel my support was misdirected and potentially harmful. Your emphasis on the fact that bad things can happen is why I avoided this forum prior to my major brain surgery a month ago. I knew bad, potentially devastating, life changing things could happen. I'm pretty sure everyone that has done any research after their diagnosis is aware that this can be serious. You may feel my brand of support isn't helpful. I'm not sure that telling people over and over that bad things can happen is helpful. For those of you in watch and wait, choosing radiosurgery or microsurgery or in limbo wondering if the treatment chosen will be the end of the journey or the beginning of a longer journey....good things can happen too. I wish everyone the very best on their respective journeys. It appears I'm not a good fit for this forum and I appreciate you pointing that out so many times in this one thread.
Thank you Kathleen. You have been very helpful. Sometimes the kindest thing you can do for someone is tell them the truth and not sugar coat things. Thank you so very much! I'm sorry your tumor had regrown 7 years after they removed it all with microsurgery. Thank you for sharing your two cents. I agree with you that major brain surgery should never be minimized.
The only contribution I've made to this thread since we last spoke was to Kathleen, where I praised Kathleen for her comments (see quote above).
My comments were friendly, positive, and in the spirit of the ANA forum.
With all due respect, I never quoted your post, and your name was never mentioned since we last spoke.
I'm sorry if you disagree with my point of view or misinterpreted my remarks; however, with all due respect this thread is not about you. Opposing points of view are more than welcome and even encouraged on the forum so long as they are respectful.
If you disagree with my point of view regarding sugarcoating, then we can "agree to disagree" as the saying goes. Everyone has passionate views, and at the end of the day we are all on the same team.
Not that I should have to defend my self; however, as many on the forum know I was initially diagnosed at Michigan Ear Institute last summer. The reference about "brain surgery should never be minimized" comes directly from their website! The Michigan Ear Institute's website under the section "SIZE OF TUMOR." Please take a look for yourself.
I was simply passing along Michigan Ear Institute's words of wisdom, which is a good thing in my opinion. I stand by my comments.
Michigan Ear Institute says "surgery should never be minimized, and the risks of surgery include death." As far as I know, death is not a side effect of radiation.
Our fellow forum member, and senior contributor PaulW, had a friend die on the operating table from the surgery. So yes, the risk should never be "sugarcoated" or minimized in my opinion. I hope anyone considering treatment factors that into their decision making process. As the proverb goes...a true friend tells both sides of the story.
I feel like I'm walking on egg shells around here before I post.
Best wishes.
http://www.michiganear.com/ear-services-acoustic-neuroma.html
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I have been notified about the tenor of the recent posts- I do not see any ill-intended posts, and hope you all can move on with this or other conversations.
Thank you all for the support and advice you provide.
Allison Feldman, CEO, ANA
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There are horrific risks involved with radiation and to state otherwise is, at best, incorrect. There are risks involved with any treatment or observation approach.
I have been shouted down by cheerleaders for pointing out the risks of cancer from radio therapy, and I probably will be again. Never-the-less, check and see what the long term research on the safety of radio-therapy is for AN's.
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There are horrific risks involved with radiation and to state otherwise is, at best, incorrect.
I respectfully disagree.
Just like (paraphrasing the ANA motto) it's important to find an Acoustic Neuroma team of surgeons who offer the most experience specifically treating AN's, who work at top-notch AN facilities considered Centers-of-Excellence, and who offer the highest success rates specifically treating AN's with the highest yearly volume of AN surgeries, it's also equally important to quantify statistics and risk regarding the individual treatment options for AN's.
As an analogy..... if one were to be in a plane crash or were to get hit on the head by a meteor while stepping out on their front porch, that would be considered truly horrific; however, the likelihood of those events ever occurring are very remote.
Please read what senior ANA forum members (ANA Administrator, Moderators, etc) have opined in the past regarding this topic:
https://www.anausa.org/smf/index.php?topic=15147.0
These people have been around the AN world much longer than most of us.
There's a reason the ANA forum has several "sub-categories" such as: facial paralysis issues, eye issues, balance issues, cognitive/emotional issues, headache, etc. While some radiation patients may visit those sections, I believe the majority of those categories are visited by post microsurgery patients.
With all due respect, I don't see any sub-categories addressing the "horrific risks" in regards to radiation; however, unfortunately almost everyday you find people struggling with many of those issues post-op.
In addition to the link I provided featuring contributions from senior ANA members, The Michigan Ear Institute also features a rather comprehensive list regarding microsurgery:
http://www.michiganear.com/ear-services-acoustic-neuroma.html
Finally, I submit these comments in good faith and with good intentions. They are solely my opinion, and not intended to offend anyone. Best wishes to everyone on their AN journey.
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Folks, PLEASE keep the discussion to the original topic. Keep in mind the original poster's intention. If this discussion continues on the current path, the thread will be locked. Suggestion is to take the discussion offline through PM if you would like to have 1 on 1 conversation. We are watching this thread very carefully.
Allison Feldman, CEO, ANA