ANA Discussion Forum
Archive => Archives => Topic started by: okiesandy on October 17, 2005, 08:31:57 pm
-
Does anyone out there have a cystic AN? I just got back from the doctor and he said I need to have this taken care of soon. Also, I just read that a cystic AN causes more facial problems this doctor said they were easier to take out and the artical said doctors sometimes think they are but the facial nerve is easier to damage.
-
Mine was cystic too Sandy and my docs told me it was a little easier to take out because they can drain it and make it collapse on itsself giving them a wee bit more room to work.
As you know mine was on my facial nerve so I do have some paralysis problems but I am recovering very well. I hope this helps a little. My heart is with you girl. :)
-
Sherry,
I just read a white paper that said some doctors think they are easier. However, the chance of the surgery causing permenent facial damage is greater.
I can't remember how long you waited to have surgery after you found out. My face is starting to be numb now. Just started and seems to be getting worse day by day. has been a week now. Today it is like a line from my mouth to cheek and cheek very numb. Sort of like a bad sinus infecton there.
-
I had a cystic AN that got very large. The tumor was 2.5 cm and the cystic component was 5 cm. I had perfect hearing, minor balance problems, but a headache that wouldn't go away. I had the tumor debulked via retrosigmoid and later removed totally via translab. I lost hearing, but that is really about it. I have no facail nerve damage at all! I do have a dry eye, but I had a punctum plug inserted that makes me pretty comfortable. I use no eye drops. I have NF2 and another AN that is now 3.5 cm and has some cystic component. My face has not felt right for nearly three years now (it feels as though it is falling asleep form forehead down onto my neck). Some days I want to get this thing out, but my hearing is completely normal, and I am not ready to be deaf yet.
Jeff
-
Sandy,
My face went numb in late January...my GP told me it was just stress!! Finally on June 9th I had my MRI and my tumor was found. It was removed on August 2nd. I only had two months to wait. You have to have the patients of a saint to be able to fight as long and hard as you have. Sherry
-
Sherry,
Absolutly no patients, just a coward about letting locat docs. cut on me. New MRI's off to Dr. B. (that may work yet). Also soon a consult about CK or GK with local doc.
-
I too have a "cystic" lesion on my left hypoglossal or 12th cranial nerve. I am interested in knowing others with "cystic" tumors what explination your Doctors gave you as to why our lesions are cystic and not the typical solid tumor.
I still have not gotten the answers that I have been searching for and I was diagnosed in January of this year. I will be seeing a
specialized ENT in Madison, Wi. for ENG and vestibular work up and they are getting a couple of new Neurosurgeons one of them is "suppose" to specialize in schwannoma tumors. SOOOOO I will be checking him out completely before making an appointment with him. I will be sending results to Dr. Brackmann as I feel as though he is the man for me at this time. He is a wonderful doctor and I have only spoke with him on the phone three times have not had the privilgedge of meeting him yet.
Julie W>
-
Julie,
The best answer I got was There are two types of tissue, Antoni A and Antoni B. A is comprised of compact tissue and B is loose tissue. When the blood supply is cut off to the tumor the cyst forms (grows?). This is the loose tissue B type that forms the cyst. It is the cyst that is growing usually and not the tumor. It is just formed around the cyst. I was told more blood vessel form around the tumor but can't feed it. Or something like that. Maybe someone else can remember just how it goes. I do know it has to do with the B and cutting the blood suppy off. I do know some of the tumors are blood filled and some another liquid
I will try and find out. All I could think of was how much it had grown in 6 months and wondering again how I was going to have this treated.
I was going to HEI and Dr. B. Now I have an appointment with a doctor to discuss radiation. I had never considered that before.
-
Hi
Best wishes on the irradiation consult. I believe if sufficient size, radiation is not the way to go with cystic ANs.
Russ
-
Russ,
Why do you say radiation is not the way to go with cystic AN? Mine is 1.3 cm now. Up from 1.0 cm in April. I have looked all over for information on cystic AN's and radiation.
-
Okiesandy,
I would suggest posing the question of treating cystic AN's with radiosurgery on the CPSG Doctors message board and see what answer you get from the physcians there. I don't claim to have any good understanding of what challenges ( if any) a "cystic" AN creates. However, I am aware of a couple of patients who were told they had cystic AN's and did fine with their CK treatment. I think it is a specific enough issue that you should be able to get pretty direct answers from doctors on rather than some of the anecdotal and unsubstantiated information that gets offered in this forum.
Mark
-
Okiesandy,
I went ahead and posted the cystic AN -treatable by radiosurgery over on the CPSG board. Here is the response from Dr. Rosenberg. Hope it helps
Mark
"Cystic" merely describes the presence of a significant fluid collection (or cyst) within the tumor. While very descriptive radiologically, we don't really use this to determine much. In fact, I just saw a 96 month follow-up from Gamma Knife of a large cystic AN that has shrunk to almost nothing and continues to shrink with each follow-up study. I would not say that being cystic, in and of itself, precludes CK or radiosurgery in general.
William S. Rosenberg, MD
Medical Director, Menorah Medical Center CyberKnife
Midwest Neurosurgery Associates
6420 Prospect Street, Suite T411
Kansas City, MO 64132
(816) 363-2500
wsr@post.harvard.edu
-
Mark,
As you know I followed your post on the CPSG board. Dr. Medbery answered. What you may not know is that I have an appointment with him soon. I was trying to gather some information so that I could ask some fairly intelligent questions. I thought Dr. R.would answer.
I want to go armed with the correct questions. I am so frustrated by the neurontologists I have been to. They are so eager to to the AN surgery they almost pounce on me to do it. I have been to two and consulted with one via telephone. They scared me away from any kind of radiation treatment from the first. After being turned down by my Ins. Co. to go out of network I started researching GK and CK because they are both offered here. Just not by any of the neruotologist. Dr. Medbery has been very up front with every question I have ask. I want to be sure I make the right decision about my treatment. I was not looking forward to having surgery in the first place. Sounds so barbaric.
-
I am looking for any information on reradiation of AN. I had FSR with Dr Lederman of SIUH (he is now at Cabrini Hosp in NY). My tumor seemed to react well. It shrank alot, but now seems to be growing again with a cystic portion. Dr Lederman tell me to wait, Dr Adler (developer of CK) tells me to reradiate. Surgeons tell me to remove it. Help!
-
okiesandy,
When we were going to radiate mom's tumor, Dr. Friedman was furious. She too had cystic tumors with in her AN tumor. He said radiation will make the cystic tumors swell and we could have killed mom. Also when we had the tumor removed, her facial nerve was right thru the tumor.
Mary
-
okiesandy,
When we were going to radiate mom's tumor, Dr. Friedman was furious.
Of course he was furious, he doesn't practice radiosurgery. Who wants to see a customer go to the "competition"?
She too had cystic tumors with in her AN tumor.  He said radiation will make the cystic tumors swell and we could have killed mom. ÂÂ
Will make them swell? It's never a will, but a may. Boy, these surgeons seem to know more about radiation than those who practice it, don't they? Ridiculous. And quite dispicable that he stooped to the level of making you think you could have killed your mother. If the tumor was large enough to possibly kill your mother if it were to swell (>3cm), than any good practicioner of radiosurgery would recommend against it. I will post again the images of a cystic AN treated with radiation.....
(http://www.ajnr.org/content/vol21/issue8/images/medium/ajnr-21-08-15-f05.gif)
FIG 5. Serial contrast-enhanced axial T1-weighted images (450/17/5) in a 64-year-old woman show enlargement of the cystic component and transient loss of contrast enhancement in the solid component at 3 months; regression of the cystic component, slight enlargement and recovery of contrast enhancement of the solid component, and slight regression of the overall tumor at 18 months; further enlargement of the solid component, no change in the cystic component, and regression of the overall tumor at 24 months; and remarkable regression of the tumor at 50 months. GKRS indicates gamma knife radiosurgery; mos., months after gamma knife radiosurgery
http://www.ajnr.org/cgi/content/figsonly/21/8/1540
-
Mary, I am happy that your mother is recovering and that you two will have more happy days togethr. Making a serious decision is just so hard for you and your MOM. You are making good decisions.
-
They( The House Ear Clinic in LA ) know more about the after affects from radiation than anyone else. They also know more about AN's then anyone else. The doctor who removed mom's tumor has done over 6000 AN removals. By far I'm not knocking radiation and I'm very glad to see CK developed an the liner accelerator used. It was Dr Medberry that was going to radiate. I feel if he knew more about AN's he would have told us to go home.
-
They( The House Ear Clinic in LA ) know more about the after affects from radiation than anyone else.
How would a group of surgeons know more about the after effects of radiation than professionals who are actually trained in the use of radiation? That's like saying radiation oncologists know more about the risks of surgery than surgeons. How did you come to that conclusion? ÂÂ
They also know more about AN's then anyone else.
They are good at removing them, but they don't know more about AN's than anyone else. Just about every academic neurological center of excellence utilizes radiosurgery, the doc that did my CK at Barrow has a PhD in tumor biology and immunology. ÂÂ
The doctor who removed mom's tumor has done over 6000 AN removals.
I'm glad things went well for your mother, but just because a doctor has removed alot of tumors, it doesn't make him anymore qualified to comment outside his field.
It was Dr Medberry that was going to radiate.  I feel if he knew more about AN's he would have told us to go home.
Why do you say that? Because a surgeon, who stood to lose money if you went the alternative route, fed you misinformation? AN's do not always swell after radiation, it happens more often with one shot gamma knife, and Dr. Medbery has a very high success rate with AN's. It's great that you and your mom made the best decision for her. Either option would have been risky for your mom, but you're taking what a surgeon said about a rival field of medicine, outside his expertise, and citing it as fact, when all the peer reviewed literature contradicts what that surgeon says. I even provided a series of MRI scans above, showing the effectiveness of radiation on cystic AN's.
-
Ok guys,
I am going to jump in on this conversation. First, no one surgeon at HEI that has done 6000. Dr. Brackmann is at around 3000 and he has done the most.
I feel I am qualified to jump into this discussion because I was scheduled for surgery w/Dr. Brackmann for Nov. 8th. I have had many conversations with him over the past few months. I know how opposed to radiation he is. He is also opposed to many of the other surgeons out there who do bad jobs with the surgery. Not all of us can go out of network for treatment. I could pay the negoiated cash price to HEI and have it done. However, I'm not going to.
That leaves radiation or a doctor without the experience of HEI and Dr. Brackmann. If any doctor was going to do my surgery it would be Dr. Brackmann. I think he is wonderful. Our local guys do not have the exposure to a large population base in my state. Even though they are eager to do it. They have all discouraged me form having rad. and spoke as if the tumor was sure to grow back. One doctor even told me I would never know if it was cancer.
I talked to Dr. Medbery and consulted with him last week. He is a gentleman through and through. He does not make the decisions about who will and will not have radiation treatment. He takes your records and film before a review board and they make the suggestion as to how to treat the AN. He is not opposed to surgrery and says the decision is up to me. He in no way ran down the option of surgery, if fact he said if I was more comfortable with surgery that would be the way to go. As it turns out I have a really bad set of MRI's the second time around and there is no way of knowing if the AN is cystic. I was told this by the local neurotologist.
Mary, I am so glad your Mothers surgery turned out well. Even Dr. Brackmann has his failures, this came from his lips, he does not make guaranties.
I have worked many years with stastistics and know they can be slanted in any direction you want the out come to be. I also know from all of my research that being cystic makes absolutly no difference in the outcome of radiation. And Yes, I got the printed information from Dr. B. regarding he sentance that says they don't reccomend radiation for cystic AN's.
Also Dr. Medbery is not out to do a bad service to anyone. As it has been said many times before go where you feel the most comfortable.
Many Blessings
Sandy
-
Sorry Sandy
I know I can come across as confrontational when I see myths about radiosurgery perpetuated. I truly don't mean to, I just get frustrated because I believe newly diagnosed patients who come here frightened and in shock that they have been diagnosed with a tumor, deserve to be presented with ALL options honestly. I think it is wrong that they should be thrown in the middle of this ongoing tug-of-war between surgery and radiation proponents in which false information runs rampant. It only adds to their stress and confusion. I just want to see the day when both treatment options are presented accurately and fairly by all, so patients can make the best decisions for their personal situations based on actual risks and benefits, without myths and misinformation skewing their decision to one degree or another.
-
My AN was treated 2 years ago and I never came across cystic AN tumor in my research, is this a new type of tumor and how is it differentiated with MRI. If a facility doesn't see alot of AN's is there a possibilityone could have a cystic tumor. That being said, are there different FSR approaches than for a normal tumor? I ask all this to try to understand if mine is cystic tumor and that is the reason I continue to have tinnitus and balance problems. Do cystic tumors have a higher regrowth rate?
-
Jamie,
You are not the one my post was directed to. I agree with you 100%. I have done a complete turn around in my thinking from my original decision. Having to get up for surgery took it all out of me. I am a coward. When I had to rethink it I included GK & Ck and guess what? That is the way I will go unless something drastic happens to change my mind.
My point is, someone quoted numbers far exceeding an actural number of surgeries for a particular surgeon and put one down that I had just come from seeing. I know that Dr. Friedman and Dr. Brackmann are both opposed to radiation. They don't do it period. In my opinion they are not considered expert when it comes to radiation. However, Dr. Medbery was not in the least pushy about radiation and even said surgery is good if that is what I want. Again, he does not decide the method of treatment a panel does. He and several other doctors are very prompt in answering all emails and forum questions. I would not want to see him drop from the Cyberknife Patient Support forum.
It is hard enough to make a decision about treatment if we don't have correct information. Again it is that old imperfect understanding of what was said. You know the old might as opposed would have. I am thirlled that Mary's Mother is doing so well and do not wish to be confrontational with her.
Time will tell about what is best. Thank God we all have a choice. You hang in there Jamie, I'm with you, lets get rid of all of the myths and get past the egos.
Sandy
-
Hi Sandy
I don't think not wanting to have your skull opened up if it's not absolutely necessary makes you a coward. Most living creatures spend their lives trying to avoid such things. Sometimes it can't be avoided, but alot of times it can. It's just that there are some professionals that stand to lose alot of money if everybody who had a small to medium tumor was immediately provided accurate information about both options. I suspect the majority of patients would opt for the outpatient, incision free alternative as opposed to open brain surgery if they were correctly informed. That's why those myths are intentionally perpetuated by doctors who do not practice that treatment. It's just common sense, although many will disagree with me, and they are fully entitled to. Radiation is serious medicine, and must be administered by experienced professionals, but alot of surgeons play on the emotive fear many of us have of it, living under threat of nuclear war and all. But it has healing qualities as well as destructive ones, I think more and more people are realizing that now. :)
-
Hi
Just thought you might ask Dr about crystalized cysts and whether they pose a greater challenge to radiation than a non crystalized cystic AN.
Best wishes to you!
Russ
Mark,
As you know I followed your post on the CPSG board. Dr. Medbery answered. What you may not know is that I have an appointment with him soon. I was trying to gather some information so that I could ask some fairly intelligent questions. I thought Dr. R.would answer.
I want to go armed with the correct questions. I am so frustrated by the neurontologists I have been to. They are so eager to to the AN surgery they almost pounce on me to do it. I have been to two and consulted with one via telephone. They scared me away from any kind of radiation treatment from the first. After being turned down by my Ins. Co. to go out of network I started researching GK and CK because they are both offered here. Just not by any of the neruotologist. Dr. Medbery has been very up front with every question I have ask. I want to be sure I make the right decision about my treatment. I was not looking forward to having surgery in the first place. Sounds so barbaric.
-
Sandy and Jamie,
First thing I want to clear up is Dr. Hitselberger has done over 6000 AN removals. He worked with Dr. House and they developed the translab procedure. I don't know about the other two procedures but with the translab they don't go thru the skull as such. They go thru the mastoid bone which is a bony projection behind the ear. This is a bone that is full of airpockets. Before the translab they did go thru the skull and the mortality rate was 40%. Now it's less than 1%.
Second is when I said they know more about the after affects of radiation I mean they have seen inside the head at what radiation can do. Does scar tissue show on a MRI? They have dealt with the scar tissue after people have radiated. I know when my mother had MRI's I looked at them and asked questions. I don't want to take the word of anyone if I can learn about it myself. I may not be a doctor but I like to think I have good common sense.
I won't say anything bad about the four doctors, outside of the House doctors, mom and I saw. Do I have questions in my mind about them? Yes I do. Our situation was totally different from many others here. There are not many who have had an AN get this large before they found out about it. Plus...there are not many who had their AN grow as fast as mom's in a short period of time. I do feel surgery was our ONLY option. It by far is not the only option for everyone else with AN's.
The only thing I want everyone who reads this to understand is....It is your body and doctors can tell you anything you want. Not just doctors you come across with your AN but all doctors. You need to do some if the research yourself. With any medical problem you may have. Think of it this way...if you get a cut and it becomes infected you go to the doctor. Why? Because you know you need an antibiotic to fight the infection. Well if someone says to you "you have a tumor", don't you want to see it to make sure? Don't you want to know if you need an "antibiotic" ?
Anyway, these are just things for you to think about. All our lives we will meet people. Some of them we will like and some we won't like. That's called Life.
-
Sandy and Jamie,
First thing I want to clear up is Dr. Hitselberger has done over 6000 AN removals. He worked with Dr. House and they developed the translab procedure. I don't know about the other two procedures but with the translab they don't go thru the skull as such. They go thru the mastoid bone which is a bony projection behind the ear. This is a bone that is full of airpockets. Before the translab they did go thru the skull and the mortality rate was 40%. Now it's less than 1%.
I believe you are correct, I think I read Hitselberger said he has done over 6,000 removals in that interview that was posted.
Second is when I said they know more about the after affects of radiation I mean they have seen inside the head at what radiation can do.
According to Dr. Hitselberger's interview, they have only done about 50 post-radiation surgeries, which isn't that many when you think of the hundreds of thousands of patients who have had radiosurgery since 1969. And the very study they released on the subject stated that only a percentage were more difficult. Many neurosurgeons, such as Dr. Steven Chang at Stanford (who also uses CK), have removed tumors after radiation, and most say there usually isn't any difference, but I'm sure there are always exceptions.
Does scar tissue show on a MRI?
My understanding is that it does....
MRI produces a remarkably accurate representation of the brain's structure. The images are extremely helpful for identifying scar tissue, areas of abnormal brain development (dysplasia), small brain tumors, blood vessel abnormalities, and changes in the brain's white matter.
http://www.epilepsy.com/epilepsy/testing_mri.html
They have dealt with the scar tissue after people have radiated.
I'm sure they have also dealt with scar tissue after people have had tumors removed, but grew back.
Note that the same issue exists for repeat surgery, since the first surgery usually leaves behind scar tissue with different texture. It is well known that repeat surgeries can be more difficult because of this scar tissue. In either case, seeking an experienced surgeon is the best way to prevent problems - or opt for a second radiotreatment instead.
http://www.anarchive.org/myths.htm
I know when my mother had MRI's I looked at them and asked questions. I don't want to take the word of anyone if I can learn about it myself. I may not be a doctor but I like to think I have good common sense.
I'm sure you do, and I'm sure you made the best decision for your mother. :)
I won't say anything bad about the four doctors, outside of the House doctors, mom and I saw. Do I have questions in my mind about them? Yes I do.
I'm sure there's not a doctor practicing that has the full confidence of every patient they have seen, nobody should continue treatment with a doctor they don't feel comfortable with.
Our situation was totally different from many others here. There are not many who have had an AN get this large before they found out about it. Plus...there are not many who had their AN grow as fast as mom's in a short period of time. I do feel surgery was our ONLY option.
I completely agree, when you were still seeking treatment and had originally asked me about radiosurgery, I was not aware of the size of your mother's tumor. Although I'm not a doctor, I would have told you in my opinion that it was too large for radiosurgery. Maybe Dr. Medbery felt that given your mother's age, surgery would have been riskier, I don't know. Swelling occurs more often with one shot gamma knife than with staged CK. Mine is dead in the middle and it didn't swell at all. That's all I was saying before when you felt I was attacking your decision, I was just saying swelling isn't a given. Surgery has it's risks too, thank god your mother had a good outcome. I think having a hindsight argument about it is silly, there shouldn't be any negativity when the outcome was good. We should all be happy about that. If somebody hoped to see somebody have a bad outcome so that their personal choice was justified in their eyes, I'd say that person was a monster. I just want to make the point that she wouldn't necessarily have had a bad outcome if you had went with radiosurgery, but I really think you made the right choice of the two in your mom's case.
It by far is not the only option for everyone else with AN's.
Thank you. There are two good options for treatment, hopefully in the near future they will be replaced by a much better one. That time will come. :)
Anyway, these are just things for you to think about. All our lives we will meet people. Some of them we will like and some we won't like. That's called Life.
It takes alot more than not seeing 100% eye to eye with somebody for me not to like them. If that were the case, I don't think I'd like anybody, lol. In any case, it's most important for us to look out for those close to us, to take care of our families, it's what most living creatures on earth do. That's called life, and you did what you felt was best. Your mother took care of you, and now you're taking care of her. She's very lucky to have a daughter that didn't just stick her in a nursing home and forget about her.
-
Thank you Jamie,
The last thing I said was not directed to anyone here. I ment the people like doctors, lawyers and actually every service type of people you meet. Some of them you will like and some you won't. I just wish we would listen to our gut instinct more.
I didn't know if MRI's show scaring . Now I do. Thank you. So many people here at the forum now a LOT of things. Many newbies and other people either don't have the time to research or are to stress out with their new found AN. They can come here to find out information or to find out where to get the information.
Also I think you can find some lasting friendships here. Friendships to people you may never meet.
-
I thank the person for explaining what and how a cystic tumor forms. I have been trying to find out that exact information since my diagnosis of a hypoglossal schwannoma last year. I had my 1year MRI and it showed no growth. YEAH!! I also had the ENG testing
done this past December 2005 and failed. The ENT Doctor said that I have bilateral vestibulopathy, but that it is not caused from
the cystic tumor nor is it from the ectactic left vertebral artery which by the way is compressing my medulla on the left. He said that the hair cells in my inner ears is deteriating faster than they should. So this is what is causeing my dizziness, headaches, pressure in my occiput and blurry and unfocused vision and pressure in my left ear. HUMMMMMMM . He said it is probably genetic because I have not been ill, nor have I been on any of the medications that could cause this type of damage to my inner ears. HUMMMMMM
I would love any thoughts on this one. I get to the point where I don't know what to believe. How can there possibly be all of these things going on in my head and all be caused by different things?? I do know that I have alot of occipital and neck pain almost on a daily basis. He said it is from compensating for the loss of balance on both sides. I am going to start vestibular therapy, so hopefully this will help with these symptoms. I will be interested to see what Dr. Brackman says about these findings as he was the Doctor who ordered the testing. He may have a different opinion.
Choosing Peace,
Julie W>
-
My addled brain keeps coming up with bad math lol... but......if
anyone did 6ooo ops and assuming that person did 2 a week, how many years would that cover? .......
thanks
-
About 60 years    60X100(or 100 ops per year)=6000 ops  That's a lot of years ::)