ANA Discussion Forum
General Category => AN Issues => Topic started by: vsfunkhouser on August 08, 2011, 05:29:36 pm
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Thought I had made my decision. First saw ENT on June 3... sent for MRI and then to Neurotogist on June 17 then an ENG & ENT. Set up appointment with co-surgeon (neurosurgeon) today, August 8 with Trans-Lab surgery to be on September 1. I went to the neurosurgeon thinking that it was a formality so that I would know the surgeons involved in my surgery.
I have a 1.7 cm AN and they also discovered that I have an unusually high jugular bulb that could present some complications. The neurotologists said he did not recommend radiation because of the size of the tumor and the location. He also said that if I had the radiation and the tumor would begin to grow again the radiation woulld complicated the surgery and the outcome would not be positive.
The neurosurgeon said today that he wanted me to understand the complication of the surgeries and that 1 in every 5 suffer from facial nerve damage. My husband asked him what his recommendation was and he basically said he would do the surgery if that is what I wanted but if it were him he would have the radiation. He said that at my age (56) if it stared to grow again, I would still have the surgical options.
OMG... talk about confused, my head is spinning! I mean this is the co-surgeon ~ I would think they would be of the same opinion.
I know of someone local that had her radiation at the Cleveland Clinic and I plan to call them for an opinion.
Does anyone have any advise? ???
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My only best advice for you is to call House for a consult. They will look at your MRI and give you a consult free of charge. They are also very frank and up front.
Good luck!
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They are located in Los Angeles, CA.... they don't mind looking at your records when you may not have treatment there?
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When I was first diagnosed my Dr. wanted me to wait and have another MRI in six months to see if it grew, I ended up a couple years waiting and watching until it grew too much and had quite a few symptoms but I waited until push came to shove. I just wonder if you are there yet? It is good to go to a Radiology consult because that could be the decision breaker, when I went they did not advice radiation so my only option was surgery, which helps the surgeons when there is no other option for you. Do your research go for opinions, you have time they are slow growers most of the time. And House Ear Clinic is awesome do send your stuff to them (hearing test, MRI) they get back to you pretty quick. Best of luck with your journey.
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HI I did send my MRI out to House and audiology reports also. The address is on their website.. you send it Express Mail (overnight at PO) and some one will call you usually within 48 or 72 hrs I believe. They are VERY helpful and informative. You do not have to have surgery there,, no commitments and they are very helpful and knowledgeable .. I have not decided who or where I will have surgery and may still go there,, but even over the phone Dr Slattery was more informative than my "local" Dr..very reassuring. good luck!
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I would strongly urge you to send copies of all of your MRIs and audiograms to HEI. They truly will evaluate them and call you with what their recommendation is in your situation. There is absolutely no obligation to go there for treatment and it is absolutely free, except for the cost of you sending the materials. You have nothing to lose with another opinion.
At the symposium in Cincinnati in June, Dr. Friedman looked at at least three different patient's MRIs that I know of while he was there.
Let us know what they say.
Clarice
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Find another qualified doc in your area and get a second opinion.
Yes, opinions at HEI are free - but if you don't have any inclination or intention to travel to Los Angeles IMO it's more realistic to talk to a doc you would actually go to for treatment. Most insurance companies will pay for 2nd, 3rd, and even more opinions when you are facing the possibility of major surgery - and AN surgery is major surgery - so don't worry if opinions aren't free.
Also keep in mind that treatment decisions are very personal choices. My neurotologist, who does both surgery and radiation, absolutely refused to make my decision for me. He said it was my decision and he was correct.
Unless there is some reason that you MUST have one treatment instead of another, you and only you should make the decision.
It's your head, it's your tumor, and it's your choice. It's not an easy decision, but you'll get there; make sure you educate yourself and go to a doc who is experienced and qualified in treating ANs. There is a list on the ANA website main page.
Good luck,
Jan
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How are you coping now?
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I recently sent my MRI to HEI also, and got a rapid response. I sent it out Express Mail on a Sat. morning from Michigan. It arrived at House on Monday afternoon (we called to make sure it was received). Dr. Friedman left a message on my machine at 11:58 EST, which is 8:58 PST (I believe the clinic opens at 9 PST). I spoke with Dr. Friedman later that day and I am scheduled for surgery with Dr. Friedman, Dr. Schwartz and Dr. Stefan on Aug 24. I highly recommend getting an opinion from an HEI doctor. It doesn't cost anything and they are very experienced. Reallly hope you find the treatment you have peace with.
Rick
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I would definitely stay away from that surgeon! Call House, send them your MRI. They will consult for free over the phone. They are the best. It is worth the time and money to go to California.....
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I changed my mind so many times, it made my head spin...as if it wasn't already spinning. This is the hardest part. Do not be in a rush to come to a decision. There are no "take overs" so do some reading, ask more questions, interview more doctors. Time is on your side. Try to take "emotion" out of your decision. Make a list of the good and bad of surgery and radiation. Write some questions. Get back on line here and ask your questions.
I decided surgery finally after asking lots of questions on this site. I asked questions in private messages about the doctors I chose, and made my decision based on those answers. I did not make a blind decision. HEI is a great clinic, but I would be willing to tell you ahead of time what their answer will be. YOU have to decide, not some doctor. I had multiple answers from lots of doctors, including HEI, I made my own decision.
Doctoring is a business, and they are all trying to make a living..."mine is the best way". Do what is best for you, not what is best for the doctor or clinic. The answer will "set you free" when you decide what to do. Same thing happened to me and all the "posties" here.
James
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I know what you mean.I have a 1.8 tumor and feel like taking a break from all these opinions.Because they are not consistent.I know the tumor is tho,or maybe,and have to make a decision.I went to a nuerosurgeon on the team of the radiologist I saw last week,yesterday and he rec. surgery.He said I can preserve my hearing and 5% chance of facial droop.He said he may take some out and not "be a hero for the MRI" when I asked about not going too close!He works out of NYU along with Roland and Golfinos,I guess that means he has worrked with them before?
So here we have the 3rd team I've seen and they dont agree with each other.The radiologist reccomended Cyberknife and his teammate Surgery!
He also said I probably had it 20 years! My hearing is compromised 5 years.
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I had radiation in 2009 and fell into the dreaded 2-3% and had regrowth. Regrowth after radiation does make the tumor a bit more difficult to remove. The doctors explained to me (before and after my regrowth) that radiated tumors have a thicker consistancy than non radiated tumors, much like a scar tissue. when they remove the tumor they "peel" it away in layers, eventually getting closer to nerves such as the facial nerve in my case. When the tumor is radiated, the "peeling" is more difficult. I am now 15 days post surgery and the doctors were able to remove 97% of my radiated tumor while save the facial nerve. I have NO facial paralysis. They left a small piece of the tumor on the nerve, tried to remove it a few times while they were in there, but the electro pulses things were showing too much damage so they back off, they even said the piece they were trying to remove may have been skin, and the chances of regrpwth now are so very slim for me.
You need to make the best decision for you, it sounds as if you might be a candidate for Gamma Knife and in my opinion this is the best option if it is an option,. It is less invasive, less side effects in the long run, and less recovery. If this is not an option, surgery is ok, I was so scared going into it, but now, 2 weeks later, im getting back to my normal self.. good luck, and let us know how it goes!
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Thanks for the reply.Do you mean I am a good candidate for Gk or Ck?They are differentand I hear Ck is better for hearing preservation.
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When I had gamma knife my hearing actually improved slightly after the procedure. I am not too familiar with cyber knife so I can't speak about that option.
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GK to CK:
GK is usually done as a single dose, which means all radiation is delivered at one time. Many people I know have GK done if most or all of their hearing is gone in their AN ear since it is a single application of the radiation and the single dose can affect hearing preservation more than other means of radiation (but not always).
CK (and others such as Novalis, Trilogy, Proton, etc) are usually (but not always) delivered in "fractionated" (ie: over multiple days/doses) in order to help hearing preservation. Many choose these in order to help with hearing preservation. There are recent studies (including one done out of Beth Isreal Boston for CK) noting successful hearing preservation with "fractionated" application of radiation. By fractionating the delivery of the radiation... the goal is to help the surrounding structures by preventing a higher amt of radiation to be delivered at one time.
Both GK and CK are extremely viable choices for radiation treatment options for AN's. The decision as to which is totally personal. Please remember that "individual results may vary....."
Hope this helps.
Phyl
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Thanks to everyone for their imput. I have an appointment scheduled for a consultation at the Cleveland Clinic on September 2. I wondered if anyone knows the precentage of patients who have re-growth when choosing the GK procedure. And if you do have a re-growth can you have the procedure a second time or is your only option surgery. Thanks! ;D
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Vafunkhouser, I had gamma knife in 2009 from dr kondziolka at upmc pittsburgh. Dr kondziolka pioneered GK for an patients and has told
Me he has done 11,000 GK procedures in his time. He also told me that in those thousands he has seen regrowth in only 8-9 individuals, myself included. He used the percentage of about 2% of people having regrowth after GK. With that said, dr kondziolka also told me that the regrowth occurred in older individuals - anywhere from 50's to 70's ( in only 26 so comparituvly
This is older, although we all know 50's isn't old!) in these patients, he did re-do GK and said he has had successful outcomes. Dr K was very shocked with my regrowth, and consulted about my case at a conference before referring me to my current surgeon. At that time, he, myself, and my
Current surgeon decided that because of my age and overall health, surgical removal would be my best long term outcome, therefore that's what I did.
My best advie to you, if you choose GK please don't get caught up on regrowth, yes it is a chance but it is so small that it's best to approach a procedure like this as if it will be the only
One! Stay positive and hood things will come!
Also, I just wanted to add to phyl's comment about hearing preservation and GK. Dr kondziolka originally explained to me that GK was the best option in preserving hearing, and like I mentioned before, my hearing improved post GK. But everyone is different and this was my experience!
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if you choose GK please don't get caught up on regrowth, yes it is a chance but it is so small
Good advice. I also think that's important to note that no one can guarantee that regrowth won't happen in surgery.
My docs surgically removed 100% of my tumor - to the best of their knowledge - but my odds of regrowth are still 1-2%. Definitely very small odds, but I just want to point out that regrowth can happen.
With surgery, even one cell left behind has the potential of growing and although docs do their best to removed every cell, medicine isn't an exact science and docs are only human.
Jan
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So are we saying GK is better for AN than CK .Or what are the percentages for CK regrowth?
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Hi there! I just checked your age:) you are young.....I would have the tumor removed if it was me! Tumors are more difficult to remove after they have been radiated. There are alot of people on this site who have had gamma knife...and then ended up with surgery anyways.
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So are we saying GK is better for AN than CK .Or what are the percentages for CK regrowth?
the same. Both have approx same total success rates (well above the 90% success range) that both are deemed extremely viable AN treatment choices. One is not deemed better than the other. Some choose over comfort (framed vs. not-framed), some choose due to hearing levels at time of treatment, some choose due to amt of days, some choose over the technology (COBALT vs. LINAC). It truly is a personal choice.
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I had surgery for a 2.5cm AN Nov 2004, a small piece was left because of the possibility of facial nerve damage. I had several side effects from the surgery - dry eye, headaches, facial nerve damage, balance issues and a constant metallic taste in my mouth. I chose a more aggressive option at age 35 so I would not have to deal with the tumor later. Unfortunately, I now have re-growth at 1.6cm and I am scheduled to begin Synergy (fractionated) treatment this week. I made my choice this time to not have to deal with the more quality of life affecting side effects and also to hopefully preserve my already weakened facial nerve. I figure if I do have to consider surgery down the road, I would most likely have further nerve damage and possible side effects again, so this is my best chance at preserving the quality of life that it took almost 5 years to get back after surgery. I also have no functioning hearing as my nerve was cut during surgery.
My advice is to consider what is most important to you - what you can and can't live with as an outcome - it can be a tough recovery from surgery and you have to be able to accept a different lifestyle. Continue to talk to doctors and ask opinions - the good and the bad. Percentages really can not be taken at face value - consider if you are one of the small percentages, can you live with that outcome.
Best of luck - most of all, do not move forward until you are comfortable.
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Thanks for all the input ...you are truely very supportive in this dark time for all who have this.I went to see yet another.This time Dr. Selesnick in the city.I thought the city treats more like you guys said.He seemed very professional aand when I asked why people choose surgery he said to get rid of the tumor,size,etc.He said I am a good candiate for radiation and rec. me to Dr.Chan @ Memorial Sloan Kettering.I have an appt with him also.I felt like he was explaining what I have and got the gist that I wasnt interested and said radiation is a good option.He also said no to Proton Beam,not specific enough I think.I sent my CD's to Stanford, Boston,and Pa.Dr. said it grow about 2mm year.So I had this about 9 years vs .last weeks surgeon said I had this 20 years??!I guess they dont know enough about this and I will have to take the plunge soon maybe in the next couple of months.
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Just have to interject here that the average growth of ANs is 1 to 2 mm per year ..... some grow much, much slower or not at all ..... some grow way faster ..... some grow slowly and then suddenly fast or vice versa. Always good to have regular MRIs if in wait and watch and keep careful notice of any change in symptoms.
Clarice