ANA Discussion Forum
General Category => Inquiries => Topic started by: km5 on March 27, 2008, 10:20:39 pm
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Hello everyone,
I have been lurking since Monday when my son was diagnosed with AN. I am grateful that this site exists, and between the site and other internet readings I feel like I understand the situation.
In some respects my son is very lucky. He felt his hearing in his right ear was decreasing, and went to a very pro-active ENT who found an abnormal hearing loss in the tests done in his office, and sent my son for a MRI. The MRI found a 4 mm AN, which I understand is pretty small.
We are also very fortunate because we live in Los Angeles, and this ENT in a suburb near LAX happens to know Dr. Brackmann at the House Institute, and arranged an appointment for our son. Our son went on his own for the first appointment, and my understanding is that Dr. Brackmann recommends surgery with the middle fossa approach. Dad and I are going with our son to see Dr. Brackmann at his next appointment next week.
So here's a couple of questions:
1) Since the tumor is small, can it possibly be just watched? The symptoms are minor and liveable. The surgery sounds pretty drastic. I understand that the tumor may grow very slowly, or fast. We just don't know. But if they're ready to schedule the surgery right away should we just go for it?
My son is handsome, strong, and recently graduated from college. His life is in front of him. He is insistent upon walking across the stage for graduation in May, and not risking having a possibly deformed face as he does so.
2) It seems, in reading the med literature, that the stats re no facial nerve damage with a small tumor are in his favor (around 96%?) But the stats re losing hearing completely are unclear to me as the studies seem several years old. Are we talking 50/50 still?
Thank you all for the support you provide.
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I was recently diagnosed with a 1.5 x 5 cm AN. Since your son's AN is so small, I would think that radiosurgery is a good option for him. That is what has been recommended to me by Dr. Chang at Stanford. I found out about Dr. Chang from other people on this discussion forum who have been treated by him. He performs both surgery and CyberKnife radiosurgery. I would do some more research before making a decision. Since his tumor is so small, you have time to consider all of your options.
Good Luck!
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At 4mm, he can certainly wait until after graduation, especially if it is only two months away. Most doctors I think would put "watch and wait" on the list of options for that size. Many ANs do grow slowly, and some don't grow much at all. The one issue would be hearing; if it continues to decline, then acting sooner rather than later gives the best chance of preserving it.
I think you are right about the facial nerve not being at much risk with such a small tumor. The hearing preservation with middle fossa surgery might be better than 50/50, but not much higher. Radiation would be a little higher on hearing preservation, but still only about 60-75%. It may also depend on how much hearing he has lost at the time of treatment.
I say wait until June before doing any treatment, so at least the graduation is unaffected. At that point, it might be reasonable to wait until September and get another MRI, to see how it is doing, or you can do treatment during the summer. Meanwhile, see what Dr. Chang at Stanford says about doing Cyberknife, as danalynn suggested. He might very well suggest waiting a while as well - he seemed to think mine was pretty small at 8mm.
Best wishes to you and your son, and be sure to tell him that he will be fine in any event, he has a good full life ahead of him.
Steve
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Hi KM5
I'm with Steve. Your son does have the option of time with an AN as small as your sons. I can only address the Translab option but I want you to know, I live in LA (Hancock Park area), I had my AN surgery through the House Clinic in December, and am available to talk with you and your son. I can't drive yet but I am getting pretty adept at the Metro. I will tell you this, you're in excellent hands with the House Clinic and St Vincents. Maybe on a future visit to House I can meet you and your son and tell you about my experience. I know nothing about radiation treatment, but maybe your son would like to meet someone who has had an AN. Just a thought.
My best wishes,
David
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Km5 -
I'm with David and Steve on this one. Due to the size of his AN, your son should be able to watch and wait for a period of time. Radiation would also probably be a great option for him. I had surgery myself (retrosigmoid) because it was what I thought was best for me (and it was). However, if my AN would have been smaller, I would have definitely given more consideration to radiation.
It seems from what I've read on this forum, that the docs at House have a tendency to recommend surgery because that is what they specialize in. I'd check out Dr. Chang since many have had wonderful results with him.
Just my opinion for what it's worth.
Good luck to you and your son,
Jan
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Hello,
Your son may be done with college, but the studying isn't over...he's going to learn a lot about ANs very quickly. One of the important things to remember is that at 4mm, your son has options. There's no going back after surgery, so it's a good idea to get input from as many doctors as you can.
I can't imagine getting that kind of news at age 23; your son must be quite a guy to be handling it so well. He's lucky to have supportive parents.
Betsy
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Hi:
I'm sorry your 23-year-old son has to face this issue but he does seem to be handling it well. Ah, the resiliency of youth. :)
I'll simply echo the chorus that has already suggested that, with such a tiny AN, your son has treatment options, including non-invasive 'radiosurgery' (radiation). I'm a little surprised at the urgency regarding surgery Dr. Brackman has shown, considering the small size of your son's AN. Retaining hearing is always a priority and, should your son choose to have surgery, the middle fossa surgical approach may be the best way to go - but I can't offer a medical opinion as my MD license got lost in the mail or something. ;)
I would definitely not make a move in any direction before your son's May graduation. It's close enough not to pose any growth problems and he can always address the AN in the summer, or even later if it doesn't grow and his symptoms don't increase. If his youthful impatience is an issue, some research should convince him that rushing into any treatment, especially surgery, is not wise.
I trust you'll be a frequent visitor here and that we can help you and your son better deal with this challenge. I'm sure he'll be O.K.
Jim
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I just returned from work and read all of your kind and helpful messages. On Monday we are seeing Dr. Brackman, and I am armed with questions, particularly about waiting, as well as questions about the most recent radiation studies. It seems like there's a real split between the surgery folks and the radiation proponents. I am leaning to the "watching" side for a few months as we don't know anything about the rate of growth/non-growth. For all we know this neuroma could have been there at the same size for years, right? We have no baseline, it is small, so what's the harm in trying to determine whether it's growing at all....I guess we'll hear from Dr. Brackman Monday.
Thank you all again.
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Something quite interesting happened:
On Friday night I emailed Dr. Chang, who does the gamma knife radiation at Stanford re the age of my son relative to radiation. He wrote me back today, Sunday, and said that radiation was a very viable option for a 23-yr-old, and that he has treated others David's age and younger. I was very impressed that he took the time out of his weekend to respond to me.
Katherine
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That sounds like Dr. Chang. I got my first reply from him on a Saturday afternoon. I believe that in fact he often catches up on his email on the weekends. I was impressed by that, and others before me have told me the same thing.
By the way, at Stanford Dr. Chang does Cyberknife, not Gammaknife. As I have said elsewhere, Cyberknife is the same idea as GK, and just as good, only better. :)
Steve
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Dr. Chang sounds like a winner to me.
Personally, I like doctors who take the time to email and/or call - and on the weekend is particularly impressive.
IMO, he definitely gets points for this :)
Jan
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I don't know about Dr. Chang, but were SSOOO impressed w/ this Dr. Byrne (the plastics guy). He was so, super nice and even called me the night before to see if I had any questions & to reassure me that they would take good care of me Friday. Then he called again on Satuday & apologized to Dave b/c he got tied up & didn't get to see us before we were released. It is that little extra touch that means so much!
K
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km5,
This is a tough call for you. Throwing a different spin on the previous threads - i had missle fossa over 5 years ago and prior to surgery i could still hear on the phone - albeit at a slightly reduced level. Following surgery, i am virtually deaf in my AN ear even though i was assured of retaining some hearing. I have also had chronic headaches since. You may want to do a search on headaches in this forum.
the side effects following surgery will be different for everyone. Some come out without a scratch and others have complications. Oh, my AN grew back as well. i am currently in watch and wait mode. personally, having middle fossa surgery was the biggest mistake i have made. It has changed my life significantly. Can you imaging chronic headaches every day? taking vasts amounts of drugs, seeing multiple neurosurgeons and pain clinics, all to no avail. sorry if the above is bitter but you need to be aware that there is a "dark side" to all of this as well.
My advice is - providing there is no noticable degradation of hearing then watch and wait. As soon as the hearing or other symptoms start to appear, then go into action. that action for mine would be radiation treatment. Once the hearing loss starts it is unrecoverable. All you can do is stop it from getting worse.
Please note, there are many good news stories from MF approach but there are also many not so good stories.
Laz
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Hello KM5
I have been watching and waiting for almost 2 years. I've had several MRI's with contrast. I am older than your son 58. I wonder why a Dr. would suggest surgery at this point for your son. His tumor is very small also. Unless it is because of his age. If he is not symptomatic with his AN, I would certainly take time and research your options. Again most of these AN's grow very slow 1-2mm per year. Some however, can grow more rapidly so repeating another MRI at 6 mos. from the first one is not unreasonable. Best of luck to you. How proud you must be to see your son graduate from college! Take your time. Helen
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Report from visit with Dr. Brackman:
Dr. Brackman was patient with his explanations, but was very clear that he recommended the surgery over radiation because David is so young. He claims 75% likelihood that hearing would remain at present levels, and 98% likelihood no facial nerve damage. David's hearing loss in high frequencies in one ear prompted his original visit a month ago to the ENT so there is a possibility that tumor has recently grown.
Dr. Brackman said no radiation because:
1) no evidence that it would control for a life expectancy of 60 years
2) surgery has better hearing outcomes
3) there are 20 documented cases of malignancies after patients had radiation.
With respect to #3 he gave us a 2007 study by the Society for Neuro-Oncology out of Toronto Canada.
The name of article is: "Glioblastoma multiforme after stereotactic radiotherapy for acoustic neuroma: case report and review of the literature" The main author is "Balasubramaniam". It has a cite: DOI:10.1215/15228517-2002-027. It seems to support his position as to malignancies in small portion of people who were treated by radiation for AN - with no other likely causes other than the radiation.
David's AN is 4mm, and Dr. Brackman said that there were no additional measurements since it is round like a pea. It does not extend out to his auditory canal.
Dr. Brackman said that the recovery would take about 3 weeks.
Seems like we have really descended into a quagmire of conflicting opinions from very reputable people on all sides of the issue. It's enough to get a headache without even having the treatments.
Thank you all so much for your thoughts.
Katherine
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I'm not a doctor, and I'm not disputing Dr. Brackman because obviously he knows a lot more about ANs than I do, but I'm very surprised that he said surgery had better hearing outcomes than radiation.
I never really researched radiation enough to have come across any statistics related to this. What kind of documentation is there to support this? Does anyone know? I'm mainly just curious.
Jan
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Katherine,
Since it is so small, and you have been working hard, you should take a little rest, to recharge your batteries. There really is no hurry on this one.
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Meanwhile, being vigilant about keeping the radiation option in reasonable perspective, I did look up the article. Here is the link:
http://www.ncbi.nlm.nih.gov/pubmed/17704364
There are some relevant quotes from the abstract:
"Review of these 20 cases revealed 10 de novo secondary tumors, of which eight were malignant, with six being malignant gliomas."
So it is actually 8 malignant tumors, not 20, though there is report of malignant nerve sheath growth in some of the NF2 patients as well.
"The majority of the cases (14 of 20) involved AN, with most being in patients with neurofibromatosis-2 (NF2; 8 of 14), reflecting the large numbers and long-term use of radiotherapy for AN."
The 20 includes 8 NF2 cases, 6 regular ANs, and 6 other cases. Of all these, 8 showed new malignant tumors; which ones is not specified. The NF2 patients would have undergone radiation treatment multiple times, for multiple tumors.
"The exact carcinogenic risk after radiotherapy is unknown but likely extremely low."
Well under 1 in 1000, certainly.
"However, the risk is not zero and requires discussion with the patient, with specific consideration in young patients and those with a cancer predisposition."
Can't argue with that; the discussion should include an accurate synopsis of the actual number of AN-related malignant tumors, and the actual risk level. Nothing is perfect. I don't think a risk below 0.1% is worth considering; it is comparable to the fatality rate of AN surgery.
Steve
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Jan
I'm with you. I thought a translab was a sure hearing loss thing and that radiation would preserve hearing. At least that was my understanding when my options were presented to me. As I understood it, since my hearing was practically nil in my AN side, there was no downside on the hearing loss issue of translab. I can guarantee you that I have absolutely no hearing on my AN side now -- I had a little before -- but none now.
David
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I'm not a doctor, and I'm not disputing Dr. Brackman because obviously he knows a lot more about ANs than I do, but I'm very surprised that he said surgery had better hearing outcomes than radiation.
I never really researched radiation enough to have come across any statistics related to this. What kind of documentation is there to support this? Does anyone know? I'm mainly just curious.
All I can say is "it's not what I've heard." I'm obviously suspicious right away because he is trotting out the old "scare them with cancer talk", which I think is not very helpful, if it is not put in perspective of overall risk, and comparable risks with surgery.
Having said all that, though, I do think a middle fossa surgery at House has a good chance of being as successful as Brackman describes. I just wish they would be a little more even handed about it, since they are both good options in this case.
Steve
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David -
No hearing on my AN side either after my retrosigmoid surgery. Retrosigmoid gives you a chance of saving the hearing, but nothing is guaranteed. Since my AN was wrapped around the hearing nerve, it didn't "make it" through the surgery. Result - SSD, soon to be helped by the BAHA.
I was hoping Steve could shed some light on the radiation/hearing question, but I didn't see anything about that in his recent post- it just dealt with malignancy.
Jan
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Ah, I posted too soon - there's Steve :)
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So I have a question for poor Larry with the headaches after his surgery:
Did you have any headaches before your surgery? Did they just come on after the surgery?
Does anyone know the likelihood/percentage of people that have permanent headaches after surgery?
Thanks for the suggestion to cut back on the research for awhile...I'm a pretty compulsive researcher, although I do hold down a full-time job. I think I can rest after the decision is made, and we figure out how we set up the consultation with Dr. Chang at Stanford.
Thanks all,
Katherine
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km5~
I don't know about Laz in specific, but I know that in MY case, I had ALWAYS had horrible headaches. I kind of turned my back on the whole AN scene & lived my life and have just recently got back on the AN bandwagon. Boy, was I surprised when I found out that others had headaches AFTER surgery -- my TOTALLY went away AFTER I had surgery -- I thought that everyone was probably that way - I was very naive...& I feel VERY blessed!!
K
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km5 -
everybody is different. I didn't have headaches prior to my AN surgery and I don't have them post op either.
Ditto for my BAHA surgery.
Jan
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I just thought I needed to say that a study of 20 patients with cancer after radiation as a treatment choice is in my opinion is not a useful study unless one is done to compare directly with the morbidity and mortality of surgery. I do not usually tell newbies about what has happened to us but I feel compelled to do so in this case. My son at 16 had brain surgery for a tumor that was not an AN however he does have allot of the same symptoms other than hearing loss. Everyone assured us that due to his age he would be fine and recover quickly from surgery. That was not the case and he had a small stroke during surgery and proceeded to stroke for 6 more days resulting in the loss of 2/3 of the right side of his brain. They did not even recognize what was happening due to 16 year olds do not have strokes. I am amazed that you were not told that all surgeries have a potential risk of stroke, infection and even death to name a few. I do not want to scare you this is not my intention however I think that you should know all the risks with each treatment and then make an informed choice. This is not a typical case and these results are very rare but they do happen even to the young and otherwise healthy. Please do not take this any other way than what is intended just continue your research and don't cross any options off just yet. I am in no way saying that surgery is not the way to go for your son and you have talked to a very skilled surgeon who has had great results with his surgeries from what I have read on the forum.
If you would like to talk to me privately just send me a PM and I would be happy to do so.
Hang in there and be sure to talk to your son openly about how he feels about the studies and different options. Sometimes they may even make a choice for treatment that you do not agree with. I believe he is one lucky son to have a Mother as involved and caring as you are. Hang in there and it will get easier as time passes. Kisses to your forehead from one Mother to another. :-* 16
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katherine,
I never had a headache in my life prior to surgery. Post surgery, i have not had a headache free day. For a fair amount of the time, its low level and i have learned to cope. For the restof the time, its like a sledge hammer going beserk on me. I quite often will have rather extended lunch breaks and go and sit under a tree. being self employed, it means that if i don't work, I don't get paid so it does get rather expensive to sleep too much. They are a curse. janet has had Occipital Nerve surgery to try and relieve the pain. Thus far it seems to have helped her. i need to explore my oprions downunder but not sure if that surgery is done here. I am also loathe to have any more surgery after my experience. even to the extent of getting a BAHA device. i need the hearing assistance but just can't face the surgery.
With radiation, the key questions to ask revolve around age of the equipment, experience of the operators and most importantly, the age of the software. radiation treatment is all about the skill of the operators and the accuracy of the software.
16 - You have endured a terrible experience. I can't imagine what you and your family have gone through. Your right that a sample of 20 patients is not a viable sample.
laz
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Laz -
sorry to hear about your headaches; I hope you find a workable solution to alleviate them.
I also wanted to say that IMO you shouldn't decide against BAHA surgery because of your headaches. Although it is a surgery, it is nothing like AN surgery.
Before I started talking to those who went before me, I thought the BAHA surgery would be another "open my head up" procedure. It isn't at all. If you truly feel that a BAHA would help you, I encourage you to look into it. There is a demo that you can try to get an idea of how it would work for you.
Jan
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16 - Your right that a sample of 20 patients is not a viable sample.
The "funny" thing is, it is not a sample. That is the entire extent of AN related cancer in all of recorded human history worldwide. 14 cases, 8 of them NF2. Not exactly a common thing.
Steve
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I had mid Fossa surgery 2 years ago, at House by Dr Brackman & Hitzelberg. I would absolutely wait and get advise from Stamford. As far as 3 week recovery, I find that impossible. Dr Brackman always veers towards surgery. I live in Redondo Bch and I have a son in his 4th year at UCLA. I would be more than willing to meet you or talk to you on the phone.
Lainie
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Dr Brackman always veers towards surgery.
For what it's worth, I've heard this from numerous AN patients who have personally consulted with him.
I'm not pro surgery or pro radiation, if it were my son, I would check into both options.
Just my opinion.
Jan
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My understanding is that radiation treatment is more about facial nerve preservation especially in tumors over 2 cm.. Up until 2 cm, the facial nerve preservation is statistically good in surgery patients. If my tumor had been between 2 cm and 3 cm, I would have taken the radiation path.
Hearing decline in radiation treatment sometimes is delayed for 2 years or more.
Here is info from the UPMC site.
Hearing preservation has three defined states:
maintenance of hearing within the same hearing class,
preservation of hearing at a "useful" or "serviceable" level (Gardner-Robertson score of 1 or 2), and
maintenance of some measureable hearing function.
"Over time, there was some drop-off in hearing preservation in patients who were 10 or more years after radiosurgery. Serviceable or useful hearing (Class 1-2) was preserved in 60 of 106 evaluable patients with a 10-year actuarial preservation rate of 53.8 + 6.8%. Drop from Gardner Robertson grade 1 to grade 2 levels of hearing were seen in two patients beyond this timeframe (at 116 and 128 months after radiosurgery). Hearing improved by one class, 4 to 24 months post-radiosurgery in 5 patients. In one of these patients, hearing was eventually lost on later follow up. One patient improved in hearing from GR class 3 to GR class 1 at 19 months. Two patients who maintained class 1 serviceable hearing noted a subjective improvement in speech discrimination after radiosurgery. Preservation of any testable hearing by pure tone audiometry was accomplished in 174 of 184 patients with a 10-year actuarial preservation-rate for any testable hearing of 80.4 + 6.8%."
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Report from visit with Dr. Brackman:
Dr. Brackman was patient with his explanations,David's AN is 4mm, and Dr. Brackman said that there were no additional measurements since it is round like a pea. It does not extend out to his auditory canal.
Dr. Brackman said that the recovery would take about 3 weeks.
Seems like we have really descended into a quagmire of conflicting opinions from very reputable people on all sides of the issue. It's enough to get a headache without even having the treatments.
Katherine
Hi Katherine,
Yes, I understand the confusion. See the piece that makes your son's case especially confusing is that he has all of the available treatment options open to him. I ,too, had all open to me at 1.5 cm. After awhile, I honed in on what was important to me.
It is captured in a Guide to the decision making process. Take a look at it and maybe it will help.
http://anausa.org/forum/index.php?topic=5786.0
Dr. Brackmann is excellent at treating acoustic patients. The more hearing a person has prior to surgery the better they are at keeping some after(with middle fossa surgery). I had 100% going into middle fossa surgery and after I had 80% high frequencies and 50% low frequencies.
I was back at work full-time after 5 weeks. As you can see, there are no "always" or "nevers" for all cases in any treatment--only individual reports. That is why I believe in peer reviewed data. It looks at the numbers in aggregate. That is why I respect UPMC as they have been tracking their data and reporting on it in peer reviewed literature for over 30 years.
BTW, I never had a headache before or after surgery.
Kindest Regards,
Kate
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I would tend to disagree with Kate's assertions on several levels.
First, Radiosurgery results are as much about hearing as they are facial nerve function
Second, I'm not sure where she is coming up with the 2 cm figure for comparable results with surgery but based on the collective studies I've seen I'd have a hard time buying the two had similar outcome probabilities until at least 1 cm and below
Facial nerve function preservation with radiosurgery consistently is 98-99% throughout the size range it effectively can treat which is roughly 3 cm or less. Keeping in mind that nerve function is the issue , not nerve preservation, surgical results clearly diminish with size. Based on what I read at about 1 cm you probably are in a 90% range in the hands of a very good surgeon, closer to the 80% range around 2 cm and reducing as you go on. At no point would I buy that surgery would deliver a 98% or better facial nerve function above a 1 cm size on a consistent basis.
In terms of hearing, it's first important to understand that the UPMC study she referenced was written in 1998 on patients that were treated with single shot GK at higher dose rates than is conventionally used today and before machines and protocols using fractionated treatments were introduced. More recent studies would suggest that across all sizes single dose GK will maintain usable hearing levels in 60-65% of the cases and fractionated CK is closer to 70-75%. Again surgery is very size dependent and I can personally attest to a 2 cm having about a 10-15% chance of retaining a usable hearing and from my notes with doctors a 1.5 cm is maybe 40-50% and a 1 cm closer to the 70-75% range.
It is also worth noting that the size jump between a 1 cm and 2 cm is not double, but essentially triple of more given it is a cubic or 3 dimensional measurement
Mark
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The more hearing a person has prior to surgery the better they are at keeping some after.
This doesn't sound right. As we say time and time again on this forum, everyone is different and while I'd like to agree that if you want to keep some of your hearing you should choose surgery, I think that would be misleading.
In the case of retrosigmoid, there is a chance of saving a patient's hearing, but from what I understand, it's not a huge chance, it's a slight chance. And in the case of translab, the surgical approach automatically means that a patient will have no hearing in their AN ear.
I think a lot has to do with the location of the AN and the "circumstances" that the doctor comes across during the surgery. Although my hearing was diminished prior to my surgery, it was actually quite good and my word recognition was almost normal. I choose retrosigmoid in the hopes of saving the hearing I had, but I knew that I could lose it. Because my AN was wrapped around my hearing nerve, I ended up with SSD.
I can't cite any studies, but IMO based on what I've read on this forum, there are plenty of patients who chose surgery and ended up with SSD.
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Hi,
Thought i would throw my pennies worth in!!!
Firstly, sorry to hear of your sons diagnonsis - but just to let u know i was 34 when i was diagnosed with 12mm left side AN in Nov 2006. I had no headaches or hearing loss was just diagnosed as had fullness feeling in ear and 3 months of tinitus. They told me there was no rush to decide what i wanted to do (i could just watch and wait) but on seeing 3 surgeons they all advised differently watch & wait, gamma Knife and surgery.
I got told that with gamma knife at my age there was some evidence of possible malignacy long term albeit very very small - just like what they told your son. The also said with gamma knife there is a 1in 10 chance of re-growth and then surgery is more difficult.
In the end i went for surgey 6 months after disgnosis (7th may 2007) as personaly i just wanted closure and even though i knew it was irational the malignancy thing played on my mind. I made sure i picked the surgeon who gave me the best odds of preserving my facial nerve (he said 100%) but he did say i would probly lose my hearing even though i had perfect hearing pre-op. I think it all depend on where and how the AN is sitting.
As a result of the surgery i did lose my hearing but my facial nerve was untouched. I was in hospital 2 weeks and all went really really well. i was back driving and holidaying after 3 months and 11 months on i can honestly say i am completely back to normal and feel great - no headaches or balance issues or anything!!!!
Just thoght it might be nice to hear a tale of smooth surgery and life post op back to normal.
Wishing you and your son well.
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The more hearing a person has prior to surgery the better they are at keeping some after.
This doesn't sound right.
Jan,
Although as you suggest, it doesn't sound right, it is posted this way on the House website. Also those comments were made specifically referencing middle fossa surgery not retrosigmoid nor translab.
"One of the major recent focuses of acoustic neuroma surgery is the preservation of hearing. The size of the acoustic neuroma and how well the patient hears prior to surgery are influential factors in the success of hearing preservation."
http://www.houseearclinic.com/acousticneuroma.htm
Also,although I have heard that retrosigmoid is a hearing preservation option, I'd be curious to know if anyone with retrosigmoid kept their hearing? While doing my fact-finding, I did not run into anybody. Just curious.
Kate
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I would tend to disagree with Kate's assertions on several levels.
First, Radiosurgery results are as much about hearing as they are facial nerve function
Second, I'm not sure where she is coming up with the 2 cm figure for comparable results with surgery but based on the collective studies I've seen I'd have a hard time buying the two had similar outcome probabilities until at least 1 cm and below
Facial nerve function preservation with radiosurgery consistently is 98-99% throughout the size range it effectively can treat which is roughly 3 cm or less. Keeping in mind that nerve function is the issue , not nerve preservation, surgical results clearly diminish with size. Based on what I read at about 1 cm you probably are in a 90% range in the hands of a very good surgeon, closer to the 80% range around 2 cm and reducing as you go on. At no point would I buy that surgery would deliver a 98% or better facial nerve function above a 1 cm size on a consistent basis.
In terms of hearing, it's first important to understand that the UPMC study she referenced was written in 1998 on patients that were treated with single shot GK at higher dose rates than is conventionally used today and before machines and protocols using fractionated treatments were introduced. More recent studies would suggest that across all sizes single dose GK will maintain usable hearing levels in 60-65% of the cases and fractionated CK is closer to 70-75%. Again surgery is very size dependent and I can personally attest to a 2 cm having about a 10-15% chance of retaining a usable hearing and from my notes with doctors a 1.5 cm is maybe 40-50% and a 1 cm closer to the 70-75% range.
It is also worth noting that the size jump between a 1 cm and 2 cm is not double, but essentially triple of more given it is a cubic or 3 dimensional measurement
Mark
Mark,
What type of surgery did you have?
My statistics come from various readings including House Ear. I found in my reading, that when the tumor was under 2 cm, facial preservation was consistent between surgery and radiation.
"Results of surgical procedures for treatment of acoustic neuroma at the House Ear Clinic with respect to facial nerve preservation are greater than ninety-eight percent (98%)."
In my reading, I found hearing preservation wasn't the main reason person's chose radiosurgery. The UPMC article is from their website and one that they keep posted on their site to this day. Actually even though 1998 sounds outdated, that is approximately the time Cyberknife began. Cyberknife has a recent (and it appears in this decade--a successful) history.
If you would be so kind to share your statistics, I'd appreciate it.
Kate
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Although as you suggest, it doesn't sound right, it is posted this way on the House website. Also those comments were made specifically referencing middle fossa surgery not retrosigmoid nor translab.
"One of the major recent focuses of acoustic neuroma surgery is the preservation of hearing. The size of the acoustic neuroma and how well the patient hears prior to surgery are influential factors in the success of hearing preservation."
http://www.houseearclinic.com/acousticneuroma.htm
Kate
Ah, the reference was to middle fossa surgery. Now it makes more sense. Thanks for the clarification.
It's also helpful to read the direct quote from the House website which reinforces what some of us said about AN size.
From reading your prior comment, I got the impression that surgery pretty much meant hearing preservation was a given - and that is not true.
Jan
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Kate,
In response to a couple of your questions
What type of surgery did you have?
Researched both extensively like most folks , opted for CK. I thought that was noted on my profile whenever I post, I'll have to check
My statistics come from various readings including House Ear. I found in my reading, that when the tumor was under 2 cm, facial preservation was consistent between surgery and radiation.
"Results of surgical procedures for treatment of acoustic neuroma at the House Ear Clinic with respect to facial nerve preservation are greater than ninety-eight percent (98%)."
I know from reading many of your posts that you do reference HEI as a source many times. While in no way diminishing their surgical expertise and acknowledging that they will tend to have better outcomes than most others, I personally do not feel comfortable with much of their information as credible for the following reasons:
1) While not a subscriber to medical journals, I can't remember the last time I found a clinical study by HEI in one when I did a google search. That process requires peer review and challenge before publication which at least validates the study methodolgy by outsiders. Anything else is self reporting which either may be legitimate or propaganda.
2) their web site comments relative to radiosurgery historically have been inaccurate when compared to the vast majority of published studies. In my view, they either haven't taken the time to stay current on that topic or are reflecting a bias and that tend to taint my view of their claims in other areas. just my opinion there
We can agree to disagree on HEI's credibility for a balanced view of both treatment options, but I look at information self reported by them as questionable.
In my reading, I found hearing preservation wasn't the main reason person's chose radiosurgery. The UPMC article is from their website and one that they keep posted on their site to this day. Actually even though 1998 sounds outdated, that is approximately the time Cyberknife began. Cyberknife has a recent (and it appears in this decade--a successful) history.
Clearly, there are many valid and very personal reasons each individual chooses an option. On the emotional side there is "I just want it out", fear of surgery, fear of radiation etc. On the outcome probability side there is the analyzing and interpreting of all the various studies one can find. Sorting through the various issues relating date, methodology and bias is a challenge for everyone. Given that facial nerve preservation is a higher priority than hearing and that hearing is to some degree compromised to some extent for all of us before treatment, I would agree that hearing is not the main reason for choosing either option.
In the context of your post, the issue you raised was the differential in result probabilities as the size of the AN increased which generally favors radiosurgery which I agree with. My counterpoint was only to the point of where the "delta" between the 2 options begins. You suggested it is the roughly the same until after 2 cm , I would suggest it's closer to 1 cm for both hearing and facial function. the caveat I would stipulate to on the facial side is if you distinguish between surgical approaches. A study I just found this morning does indicate that the translab approach can have a high 90 plus % result up to 2 cm, but not the middle fossa. If the 98% you quoted from HEI is specific to TL then another study would seem to validate that. However, the way your post read there was no indication that they were not making an assertion regardless of route.
OK, here are a couple of studies I would offer to the discussion
While I wish more studies would isolate data by AN size, only a few seem to do that. Here is one from UCSF dated 2001 which I based most of my comments on
http://www.ucsf.edu/nreview/06.4-Oncology-HistologicalType/AcousticNeuroma.html
The relevant table is this
Cranial Nerve Preservation Following Surgery
Tumor Size VIIth Nerve VIIIth Nerve
< 1 cm 95-100% 57%
1-2 cm 80-90% 33%
>2 cm 50-75% 6%
A 2002 study by Robert Jackler , et all comparing middle fossa to translab. Dr. Jackler is probably one of the most published clinicians on AN's in the world. I still have the 2 inch thick stack of his articles he gave me at my consult :). This supports the claim of comparable results at 1 cm or below to what is observed for most radiosurgery studies, but also shows declining outcomes for middle fossa between 1-2 cm, but equivalent facial for translab to that size. Of course hearing is a non issue forTL at any size.
http://med.stanford.edu/profiles/frdActionServlet?choiceId=showPublication&pubid=40759&fid=3947
the abstract is
Risk-benefit analysis of using the middle fossa approach for acoustic neuromas with >10 mm cerebellopontine angle component.
Satar B, Jackler RK, Oghalai J, Pitts LH, Yates PD
OBJECTIVES: To evaluate hearing preservation and facial nerve (FN) outcome in the middle fossa (MF) approach for acoustic neuromas with a cerebellopontine angle (CPA) component >10 mm. STUDY DESIGN: Retrospective review of 193 patients. PATIENT POPULATION: Patients were grouped according to tumor size: intracanalicular tumors (IC; 64), 1 to 9 mm CPA extension (42), and 10 to 18 mm CPA extension (47). Additionally, a group of 40 patients (tumor size 10-18 mm CPA extension) who had undergone a translabyrinthine (TL) approach was studied to assess comparative FN outcome. Hearing and FN function were measured 1 year postoperatively. We defined the success at functional hearing preservation as AAO-HNS class B or better and good FN outcome as House-Brackmann grade II or better. RESULTS: For IC tumors and those with up to 9-mm CPA extension, there was no significant difference in the rate of functional hearing preservation (62.2% vs. 63.1%, P =.931) and good FN outcome (93.7% vs. 97.6%, P =.358). For tumors of 10- to 18-mm CPA extension, the rate of hearing preservation (34%) was lower than the other groups (P =.006 and P =.009). In this group, the rate of good FN outcome was lower compared with the IC and 1- to 9-mm tumors (80.8% vs. 93.7%, P =.037 and 97.6%, P =.012). The rate of good FN outcome following the TL approach in a comparable cohort of patients was 100% (P =.003 in comparison with 10-18 mm tumor resected with the MF approach). CONCLUSIONS: When considering surgical options, patients with >10-mm tumors should be advised that choosing the MF approach for hearing preservation carries a somewhat higher risk of persistent FN dysfunction.
Study by Steve Chang et al on CK results as of 2005. I understand there is an updated report due out in a couple of months with a larger study sample size and obviously follow up period
http://med.stanford.edu/profiles/frdActionServlet?choiceId=showPublication&pubid=66900&fid=4735
the abstract is as follows and suggests better hearing and facial nerve outcomes than the 1998 study and includes all AN sizes
Neurosurgery 2005; 56 (6): 1254-61; discussion 1261-3
Staged stereotactic irradiation for acoustic neuroma.
Chang SD, Gibbs IC, Sakamoto GT, Lee E, Oyelese A, Adler JR
OBJECTIVE: Stereotactic radiosurgery has proven effective in the treatment of acoustic neuromas. Prior reports using single-stage radiosurgery consistently have shown excellent tumor control, but only up to a 50 to 73% likelihood of maintaining hearing at pretreatment levels. Staged, frame-based radiosurgery using 12-hour interfraction intervals previously has been shown by our group to achieve excellent tumor control while increasing the rate of hearing preservation at 2 years to 77%. The arrival of CyberKnife (Accuray, Inc., Sunnyvale, CA) image-guided radiosurgery now makes it more practical to treat acoustic neuroma with a staged approach. We hypothesize that such factors may further minimize injury of adjacent cranial nerves. In this retrospective study, we report our experience with staged radiosurgery for managing acoustic neuromas. METHODS: Since 1999, the CyberKnife has been used to treat more than 270 patients with acoustic neuroma at Stanford University. Sixty-one of these patients have now been followed up for a minimum of 36 months and form the basis for the present clinical investigation. Among the treated patients, the mean transverse tumor diameter was 18.5 mm, whereas the total marginal dose was either 18 or 21 Gy using three 6- or 7-Gy fractions. Audiograms and magnetic resonance imaging were obtained at 6-months intervals after treatment for the first 2 years and then annually thereafter. RESULTS: Of the 61 patients with a minimum of 36 months of follow-up (mean, 48 mo), 74% of patients with serviceable hearing (Gardner-Robinson Class 1-2) maintained serviceable hearing at the last follow-up, and no patient with at least some hearing before treatment lost all hearing on the treated side. Only one treated tumor (2%) progressed after radiosurgery; 29 (48%) of 61 decreased in size and 31 (50%) of the 61 tumors were stable. In no patients did new trigeminal dysfunction develop, nor did any patient experience permanent injury to their facial nerve; two patients experienced transient facial twitching that resolved in 3 to 5 months. CONCLUSION: Although still preliminary, these results indicate that improved tumor dose homogeneity and a staged treatment regimen may improve hearing preservation in acoustic neuroma patients undergoing stereotactic radiosurgery.
These would be what I would base my previous thoughts on
Best,
Mark
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Hello everyone
This is Kathy, the 23-yr-old's mom again. I am gratified that our journey has created some really provocative discussions on these boards. Our son-in-law, currently doing a postdoctorate in neuroscience, did his review of all the scientific literature, and his conclusion is strongly in favor of radiosurgery for his brother-in-law, our David. We have made an appointment to see Dr. Chang, at Stanford, in early May for consultation.
We have sent along some of the articles etc to our son, David, and we talk about the choices every few days. I see him wavering back and forth, with some of the bravado of a young man i.e. "I have full confidence that I am very healthy and strong. I will work out a lot in the next few weeks. I will recover from the surgery with no problem, and I am happy to get the tumor out." Also, " I have a life expectency of 65 more years. I am not satisfied to hear that radiation only has a history of 30 plus years."
Ultimately, the decision is David's. He is an adult, and we can't push him one way or another. I am hopeful that Dr. Chang will be just as convincing as Dr. Brackman. David is going on a young adult trip to Israel in May, right after he graduates college, and he thinks that perhaps the "spirituality" of the trip will make his decision more clear. Luckily his 4 mm AN gives him some breathing room. So I will let all of you know next month about the consultation with Dr. Chang.
Thank you all again so much for caring.
A new question: Dr. Brackman was quite clear that in order to remove the AN it is necessary to sever the balance nerve; the opposite ear then takes a few days to correct the balance issue. Why would anyone go thru this procedure that severs a nerve, albeit not the facial nerve, forever, if another less-invasive alternative i.e. radiation, with similar results, is also available?
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" I will recover from the surgery with no problem, and I am happy to get the tumor out." Also, " I have a life expectancy of 65 more years. I am not satisfied to hear that radiation only has a history of 30 plus years."
Dr. Brackman was quite clear that in order to remove the AN it is necessary to sever the balance nerve; the opposite ear then takes a few days to correct the balance issue. Why would anyone go thru this procedure that severs a nerve, albeit not the facial nerve, forever, if another less-invasive alternative i.e. radiation, with similar results, is also available?
I think it is more like a few weeks, not just days, to adjust to the change in balance nerves. The quote from David pretty much answers your question about why would people do that. Dr. Medbery on the CK forum asks himself the same question. Some people like the idea of surgery better than the idea of radiation; all I can say in reply is "to each his own." In the end, though, it is important that the patient believes in the treatment they are getting. If it turns out that David prefers the surgery, it pretty much has to go that way. At 4mm, I do hope he at least takes that trip to Israel first, and walks in his graduation.
Let's see how he reacts to Dr. Chang first. Dr. Chang can be pretty reassuring and convincing when he wants to be.
Steve
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Kathy -
I think the consultation with Dr. Chang is a good idea. It certainly can't hurt to explore all your son's options.
As far as your question about severing the balance nerve, in my experience, the balance issue does correct itself. Generally the first couple of days are the worst and then the body starts to compensate and in a few weeks time things are pretty much back to normal.
I had my surgery about 10 months ago and I still notice slight balance problems on occasion - usually only when I'm tired or have walked a long distance. But, I want to stress that they are only slight; I have no major balance issues.
Jan
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" I have a life expectency of 65 more years. I am not satisfied to hear that radiation only has a history of 30 plus years."
Ultimately, the decision is David's. He is an adult, and we can't push him one way or another. I am hopeful that Dr. Chang will be just as convincing as Dr. Brackman.
A new question: Dr. Brackman was quite clear that in order to remove the AN it is necessary to sever the balance nerve; the opposite ear then takes a few days to correct the balance issue. Why would anyone go thru this procedure that severs a nerve, albeit not the facial nerve, forever, if another less-invasive alternative i.e. radiation, with similar results, is also available?
Hi Kathy,
There is no one right way to treat an acoustic neuroma and that is the confusion and conflict in the decision making process. Oftentimes it then becomes the persuasiveness of the doctor relative to the information provided. As we have learned from all of our collective experience each doctor has their own belief in the current system they are doing...even if both are in the conversation.
I think you've hit the nail right on the head with the argument for the various procedures. One of them is the long term data relative to radiation. Thirty years is a fair amount of time for follow up; but it is 30 years. In that time, they learned to reduce the "gy" in order to minimize the side effects. So even though it is 30 years of data, it is less when you are discussing apples to apples. With Cyberknife, that procedure started about 10 years ago..In 2001, it was considered a new procedure. I look forward to peer reviewed published studies from Stanford once they have a detailed patient group and follow up. I suspect the data will be positive and line up with the gamma knife data and once published will most likely include our own membership:-) (albeit unnamed in study results)
The other side compensates for the balance nerve.
I agree with the others, that at 4mm he has time to focus on graduation and his planned trip prior to making a decision.
To help people consider what is important to them, there is a guide to the decision making process that David or yourself may find useful. It helps you identify what are the non-negotiables for you.
http://anausa.org/forum/index.php?topic=5786.0
All the best,
Kate
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[i]Neurosurgery 2005; 56 (6): 1254-61; discussion 1261-3
Staged stereotactic irradiation for acoustic neuroma.
Chang SD, Gibbs IC, Sakamoto GT, Lee E, Oyelese A, Adler JR
OBJECTIVE: Stereotactic radiosurgery has proven effective in the treatment of acoustic neuromas. Prior reports using single-stage radiosurgery consistently have shown excellent tumor control, but only up to a 50 to 73% likelihood of maintaining hearing at pretreatment levels. Staged, frame-based radiosurgery using 12-hour interfraction intervals previously has been shown by our group to achieve excellent tumor control while increasing the rate of hearing preservation at 2 years to 77%. The arrival of CyberKnife (Accuray, Inc., Sunnyvale, CA) image-guided radiosurgery now makes it more practical to treat acoustic neuroma with a staged approach. We hypothesize that such factors may further minimize injury of adjacent cranial nerves. In this retrospective study, we report our experience with staged radiosurgery for managing acoustic neuromas. METHODS: Since 1999, the CyberKnife has been used to treat more than 270 patients with acoustic neuroma at Stanford University. Sixty-one of these patients have now been followed up for a minimum of 36 months and form the basis for the present clinical investigation. Among the treated patients, the mean transverse tumor diameter was 18.5 mm, whereas the total marginal dose was either 18 or 21 Gy using three 6- or 7-Gy fractions. Audiograms and magnetic resonance imaging were obtained at 6-months intervals after treatment for the first 2 years and then annually thereafter. RESULTS: Of the 61 patients with a minimum of 36 months of follow-up (mean, 48 mo), 74% of patients with serviceable hearing (Gardner-Robinson Class 1-2) maintained serviceable hearing at the last follow-up, and no patient with at least some hearing before treatment lost all hearing on the treated side. Only one treated tumor (2%) progressed after radiosurgery; 29 (48%) of 61 decreased in size and 31 (50%) of the 61 tumors were stable. In no patients did new trigeminal dysfunction develop, nor did any patient experience permanent injury to their facial nerve; two patients experienced transient facial twitching that resolved in 3 to 5 months. CONCLUSION: Although still preliminary, these results indicate that improved tumor dose homogeneity and a staged treatment regimen may improve hearing preservation in acoustic neuroma patients undergoing stereotactic radiosurgery.[/i]
These would be what I would base my previous thoughts on
Best,
Mark
Mark,
You are one of a select group in that as of 2005, 270 patients were treated. I look forward to continued publication of data from Stanford in the future. Words used in his article suggest that this follow up is preliminary and that this article represents 61 of the 270 patients. 61 is a good starting number and as those numbers grow there will be more long term data.
Again, I think radiation is a viable option. For me, it would have been between the 2cm and 3 cm mark (and depending on the location) I felt comfortable selecting surgery with a 1.5 cm tumor. I am thankful that we as patients have the options to make choices that best reflect our preference.
As you may already know, publishing data even in pub med does not mean it underwent peer review. I contacted the librarian several years ago and this was her response:
"Not all journals selected for Index Medicus are peer-reviewed , nor do we designate which journals are reviewed. You can look up a journal title in Ulrich's International Periodicals Directory published by RR Bowker
and if it has the designation "refereed" the journal is peer-reviewed.�
C. Williard e-mail
Reference librarian at the Nat’l Llib of Med
Kate
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16 - Your right that a sample of 20 patients is not a viable sample.
The "funny" thing is, it is not a sample. That is the entire extent of AN related cancer in all of recorded human history worldwide. 14 cases, 8 of them NF2. Not exactly a common thing.
Steve
My question is about the number size of the sample.
What is a viable sample? I just read an article Mark posted by Dr. Chang. His entire cohort group is 61 patients. When does a number become viable?
This question is not in reference to this particular study...just the viability of a sample size.
Just curious,
Kate
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And I have a question about surgery after-care...
What are the average number of days one stays in ICU after middle fossa surgery?
What are the average number of days in the hospital?
Dr. Brackman told David he would be "walking out" of the hospital i.e. he wouldn't be dizzy or so off-balance he couldn't walk.
Is that the average experience?
When people say they go to work after 3-5 weeks, what does one do in the meantime?
Dr. Brackman said David would not be confined to a bed, but could roam around the house, watch TV etc., just not drive. Basically rest up from the surgery, then get the stitches out etc. Is that the average experience?
Thanks so much again,
Kathy
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And I have a question about surgery after-care...
What are the average number of days one stays in ICU after middle fossa surgery?
What are the average number of days in the hospital?
Dr. Brackman told David he would be "walking out" of the hospital i.e. he wouldn't be dizzy or so off-balance he couldn't walk.
Is that the average experience?
When people say they go to work after 3-5 weeks, what does one do in the meantime?
Dr. Brackman said David would not be confined to a bed, but could roam around the house, watch TV etc., just not drive. Basically rest up from the surgery, then get the stitches out etc. Is that the average experience?
Thanks so much again,
Kathy
Kathy,
1. A person is in ICU for 24 hours.
2. I was in the hospital four days and walked out of the hospital. I was tired the first few weeks.
3. I returned to work full time after five weeks. During the first five weeks, I recuperated and followed the doctors orders: no lifting, etc.. I stayed in CA for two weeks and slept a lot the first week. At one week, I was out for dinner in Hancock Park.
There is a thread about HEI experiences. I'll look for it. http://anausa.org/forum/index.php?topic=18.msg153#msg153
Kate
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Kathy,
My AN was 1.7cm I had mid fossa surgery at House. I was in ICU 24 hrs and hospital a total of 5 days. Yes I walked out of the hospital [ with assistance ] the drive home was a feeling of being a goldfish in a bowl being driven in a car. I hope you understand that description. I basically slept a lot for the first few weeks, the fatigue is unbelievable and it is better to not try and fight it. I had no taste in my mouth for about 10 months and lost 20lbs. For me that was the only good thing. I went to vestibular training for about 2 months and still do the exercises. I relied totally on my husband for the first 6 months. I think I drove for the first time
about 2 months after surgery. I am now 2 years along and while my balance is not what it was I have to keep "plodding on" I have a BAHA and I am happy with it. For me the worst thing has been the facial paralysis. I am sure I feel it is a lot worse than others see it. I am still dealing with that. If you read my post about Nintendo DS and eye training you will see that I just got back from a cruise. I Zip lined over the rain forest, rode on the back of a scooter, and was on a catamaran for a 4 hour sail. I think that you have to decide that life goes on, all be it not the same. People recover at different speeds, and attitude definitely plays a huge part. I wish that the Dr would have been more realistic about outcome and recovery. I was led to believe that there was a 70% chance my hearing would be saved and better than 90% my facial nerve would not be affected. and basically my life would soon get back to normal. When I went back for check ups after the surgery and asked about all the things that were happening to me, I was told that is normal and there is nothing you can do to help it. Basically I would leave the clinic very upset. Your son is young and his AN is very small, arm yourself with as much information as you can, and get consultations from more than 1 Dr.
Lainie.
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HI,
In answer to your questions after my surgery,
I was in ICU for 24 hours
I stayed in hospital 14 days in total (standard time INI like to keep you in)
I walked out of the hosp feeling a little off balance but ok - walked round Hannover zoo with 2 kids 16days after surgery.
Got the train home from Germany to London 21 days after surgery. So was definately walking etc!!!
I Just spent the 3 months after surgery watching tv and just generally relaxing still walked to school with kids and walked to collect them. My balance felt slightly off and i had a stiff neck and headaches (not that bad) but that all improved over 12 weeks.
I was told that any damage to the balance nerve would rectify itself in a few months which in my experience was what happened.
11 months on balance absolutely fine. My doc recommended lots of sport to get my balance back like dance, a raquet sport or martial art - i opted for tai boxing! My balance improved very well with that.
Hope that helps.
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Hi,
I was in ICU for 24 hours and out of the hospital in 5 days. After 8 days I was riding the public bus system in LA and shopping at the Grove. After 12 days I flew 4 hours back to Atlanta. No problems with balance or headaches. I had a translab approach.
Hope that helps!
Lisa