The actual act of scheduling surgery was as simple as an e-mail. The mental anguish surrounding this simple act is the complicated part.
I walked into my appointment with Dr. M knowing he already recommended active treatment of some sort back in July when I did my 6 month MRI/audiogram. I was leaning toward surgery and mentally planning to do it in the spring of the next year (2013). After Dr. M confirmed he recommended surgery for me, I still was not prepared to just say, "Yes, let's do it."
As for all of my other doctors appointments, my parents were watching my kids. This particular one they took advantage of it being on a Friday to keep the kids overnight for a sleepover. This left Greg and I to spend the night in the City. I am fairly certain my mom kept the kids overnight partly because she knew I would have a lot of my mind and Greg and I would need to have some time to just be together and work through this.
We left the appointment and headed to our hotel. Of course we talked and this brought up so many more questions that I should have asked in my appointment. I took notes and knew I could e-mail them to Miss A, the practice coordinator extraordinaire, and she would get back to me with answers.
Miss A e-mailed me promptly on Monday morning, before I could compose my e-mail to her with my questions. She indicated when I make my decision to contact her via e-mail or to call her. She is just amazing! I sent my questions back to her and we sent a few e-mails back and forth.
I still did not finally decide to send the e-mail that I wanted to schedule my surgery until Monday December 10th. Yup, I waited another week to send that e-mail. Getting answers to my questions was one stall tactic. I also had to figure out when to schedule it.
I personally have never really had major surgery. I had my wisdom teeth pulled; that was so long ago I hardly can remember that one. I have had two kids, so I know what it is like to be in a hospital. While I was certain I would probably not be driving myself to the hospital for surgery, I was not sure what role Greg wanted to play in all of this. He is the dad, so of course he was right there for the birth of both our kids. But this is so different to me, I figured he would be managing the kids. I was wrong. He plans to be with me as much and as long as possible.
Everything these days is for the kids. Our lives revolve completely around taking care of them. Other things interject themselves, but in general I am pretty much about making sure my kids are happy and healthy and that I am doing what I am capable of doing to advance their lives. It seems completely ridiculous that I have to step back and remember, Greg chose me to marry 9 years ago. He loves me and I am important to him and he will be right there with me as I go through all of this. Yes, he will be driving me to the hospital and staying there in the waiting room while I sleep through 6 - 8 hours of surgery.
So, that meant my mom and dad will have to take care of the kids while I am going through this. We decided it would be easiest on them do this when they are out of school, so either over Winter break ("ski week"), or Spring Break.
Spring Break won out; my surgery is schedule for Wednesday April 17, 2013 at UCSF with Dr. M and Dr. L. Wish me luck.
Wednesday, March 20, 2013
Thursday, March 14, 2013
The Trans-what?-ian approach?
Warning: graphic surgical cartoons to follow!
Translabyrinthine Approach (Translab)
The below definition is from earsite.com as well as the images that follow:
The translabyrinthine approach is an approach that involves an incision behind the ear and a craniectomy (i.e. permanent removal of bone) of the mastoid bone and the semicircular canals of the inner ear. A consequence of this approach is the complete loss of hearing on the operated side. Tumors of all sizes can be visualized and removed using this approach. At the end of the operation, fat is harvested from the abdomen and used to replace the bone that was removed. This helps prevent the possibility of spinal fluid leakage.
This is from wikipedia:
The translabyrinthine approach was developed by William F. House, M.D., founder of the House Ear Institute [1], who began doing dissections in the laboratory with the aid of magnification and subsequently developed the first middle cranial fossa and then the translabyrinthine approach for the removal of acoustic neuroma.
This surgical approach is typically performed by a team of surgeons, including a neurotologist (an ear, nose, and throat surgeon specializing in skull base surgery) as well as a neurosurgeon.
And this article highlights the pros and cons well:
Pros: The one taught in medical schools, this surgical approach is preferred by many surgeons since it gives an excellent view of the tumor in the internal canal. Translab provides direct exposure of the tumor without the need to push aside any brain tissues to get at it. Translab makes it easiest to avoid the risk of facial nerve damage and facial paralysis (according to an article by a prominent neurosurgeon Dr. Brackmann, this is because translab permits positive identification of the facial nerve). Also, few muscles are attached to the mastoid so that there is little muscle pain after surgery. This surgical approach can be performed relatively quickly for small tumors.
Cons: Total deafness and loss of vestibular apparatus (balance organ) are guaranteed. The exposure is relatively small, so removal of large tumors may take longer and may be riskier. For such tumors, even when the facial nerve is preserved, there is a risk of a significant drop in the quality of life as a result of accidental damage to the brain.
I have compiled the words from earsite.com and Baylor College of Medicine. The Baylor site has actual surgical images; I find them too graphical and I can not really understand what I am looking at anyway.
Step 1 to 3 can take up to 3 hours to perform. That part is done by the ENT, in my case Dr. L from UCSF. The resection of the tumor itself it done by a neurologist, Dr. M from UCSF will be doing that part.
Step 1: A translabyrinthine approach to excision of an acoustic neuroma is illustrated. An incision is made behind the ear.
Step 2: The mastoid bone and surrounding muscles are exposed
Step 3: A mastoidectomy is performed exposing the semicircular canals, venus sinus, dura covering the brain, and spinal fluid. The semicircular canals are removed exposing the internal auditory canal.
Step 4: The tumor is exposed and the dura of the internal auditory canal is opened.
Step 5: The tumor can be seen extending into the internal auditory canal. The trigeminal nerve that is responsible for transmitting information on facial sensation is displaced. The central portion of the tumor is gutted out allowing the capsule to collapse on itself.
Step 6: The capsule is then dissected away from the facial nerve.
Step 7: The dura is laid back in place.
Step 9: Fat harvested from the abdomen is used to fill the cavity to help prevent spinal fluid leakage.
Step 11: The incision is sutured
Arnold, that's the last straw!
The decision to wait some more came in mid-July. That meant I only had a little over 4 months until I would go through another audiogram and MRI. I thought all of this waiting would be so agonizing; that having Arnold just hanging over me would drive me crazy. In fact, the waiting gave me time to accept that he really is there and to accept that my hearing is lost to me and would not ever return.
For me, there was no epiphany moment where it just sank in and I got it. It has been a slow process of living with the hearing loss and knowing that Arnold is just right there, hanging out between my ear and brain stem, pushing on those nerves, causing tons of tinnitus and distorting my hearing. As I was able to talk about it more and make jokes about not being able to hear, somehow I slowly have been able to accept it.
Many of you know this shirt that I have:
Here is my first MRI from a year ago:
Here is my latest scan, one year later:
Thankfully, I have copies of all my scans and software to view them. I can even take my own measurements. No, I am no radiologist, but given how different each reading has come back (let's see, the second one neglected the third measurement, the third one did not even bother with a decimal point accuracy...), I figured if I measured myself I would pick as close to the same points for measuring as three different radiologist would. I found that from the first scan to the second it was slightly enlarged and the second scan to the third it also was slightly enlarged. It has a rather steady growth pattern, which is expected for acoustic neuroma.
I was smart this time and went ahead and had scheduled an appointment with Dr. M back in October when I was setting up all these follow-up tests. We met with him a week after my MRI. He told us it's growing, it will continue to grow, might as well treat it now. We talked about the different options, but then we pushed him to make a recommendation. He said given my age and that I have no useful hearing left, he recommends surgery, the translabyrinthine approach.
Now a little background on Dr. M. He is a very well regarded neurosurgeon AND he is the director of the Gamma Knife program at UCSF (that's the radiation). He treats with both approaches, I feel confident in his recommendation.
I did not decide then and there in the appointment to go ahead with surgery and schedule it. It still took a couple of weeks to come to that decision. So, yes, I am going to have surgery and I hope to say good-bye to Arnold forever.
For me, there was no epiphany moment where it just sank in and I got it. It has been a slow process of living with the hearing loss and knowing that Arnold is just right there, hanging out between my ear and brain stem, pushing on those nerves, causing tons of tinnitus and distorting my hearing. As I was able to talk about it more and make jokes about not being able to hear, somehow I slowly have been able to accept it.
Many of you know this shirt that I have:
Greg bought this for me as way to relieve the tension and inject some humor. I think it has helped quite a bit and, well, the kids love it.
I would like to interject here that most of my interaction with Dr. M's office is through e-mail with his amazing Practice Coordinator, Miss A. She always answers my e-mails and is completely on top of everything. She told me once I had decided to wait for the one year mark that she would be contacting me at the beginning of October to set up appointments. On October 1 I received an e-mail from her telling me she had called my insurance to check for pre-authorization and had send the MRI request to PAMF, where I have been going for my MRIs. Her professionalism, responsiveness and organization give me great confidence in this doctor's office.
My audiogram was on Thursday 11/8.
The blue box is where my hearing was on my last audiogram. As you can see, tones in my right ear took a dive. Word recognition on this one was non-existent.
If you have not done a hearing test lately, they certainly are different from when I was a kid and put those headphones on and listened for tones. It is done in a sound room and they do lots of neat things like check that your ear drums are working properly and that conductivity through your bones works. The main part of the test they plug both ears with an earphone in each ear. The doctor closes the door to the sound room and then talks to you through the earphones, first in one ear and then the other. This isolates the ears completely for each test.
For this go around, she talked to me in the left ear when it came time to test in the right ear. When the word recognition part came, she said she wanted to just try, so I said ok. She switched over to the right ear and I listened and listened and waited for her to say something. Then she said it was over. My useful hearing in my right ear really is gone.
One fun thing she did just on the right ear was to put a headset just behind my ear on the temporal bone. She then played static in the left ear and tones in that headphone on the right side. Because the bone could conduct it over to my left ear, I would hear the tones in my left ear! It was so weird.
My MRI was
scheduled for Friday 11/23. Yup, the day after Thanksgiving. As
occupied as I was, it was still difficult to have to focus on
confronting Arnold yet again and seeing what he had in store for me this
time.
You can see he has grown. The official findings were:
My last MRI, 6 months ago, measured 8.3 x 4.8 x 5.8 mm. So, according to my math, that was a 3.7mm hike in size! That is a 44% increase?! and they think it is "slightly" enlarged?!Again identified within the right internal auditory canal is an enhancing expansile mass with dense associated enhancement measuring approximately 12 x 6 x 6 mm in maximal diameter, slightly enlarged as compared with prior exams.
Thankfully, I have copies of all my scans and software to view them. I can even take my own measurements. No, I am no radiologist, but given how different each reading has come back (let's see, the second one neglected the third measurement, the third one did not even bother with a decimal point accuracy...), I figured if I measured myself I would pick as close to the same points for measuring as three different radiologist would. I found that from the first scan to the second it was slightly enlarged and the second scan to the third it also was slightly enlarged. It has a rather steady growth pattern, which is expected for acoustic neuroma.
I was smart this time and went ahead and had scheduled an appointment with Dr. M back in October when I was setting up all these follow-up tests. We met with him a week after my MRI. He told us it's growing, it will continue to grow, might as well treat it now. We talked about the different options, but then we pushed him to make a recommendation. He said given my age and that I have no useful hearing left, he recommends surgery, the translabyrinthine approach.
Now a little background on Dr. M. He is a very well regarded neurosurgeon AND he is the director of the Gamma Knife program at UCSF (that's the radiation). He treats with both approaches, I feel confident in his recommendation.
I did not decide then and there in the appointment to go ahead with surgery and schedule it. It still took a couple of weeks to come to that decision. So, yes, I am going to have surgery and I hope to say good-bye to Arnold forever.
Monday, March 11, 2013
As Arnold moves in...my hearing moves out.
Watching and waiting turned out to not be as agonizing as I thought it would be. By the time I had my meeting with Dr. L, the Otolaryngologist at UCSF, it was mid march and four months had passed since my diagnosis. With just two months left to reach the 6 month mark, it was not all that much waiting.
I had my next MRI on Tuesday May 22. The results came in and the radiologist deemed it "unchanged". Here are her exact words:
Remember my first scan measured: 8.3 x 4.5 x 6.1 mm, so of course the first question to pop into my head was, "What happened to the third measurement?" Next I thought, "well, 4.5mm to 4.8mm looks like growth to me. "
To answer the first question, I e-mailed back to the ENT at PAMF, Dr. S, and asked him about that third dimension. He was able to have the radiologist re-read the scan and she provided:
I sent a copy of my scans off to Dr. M's (neurosurgeon at UCSF) office and waited to see what he had to say.
In the mean time, I had another audiogram done on June 5th. I very deliberately scheduled my audiogram to be done by the same doctor, Dr. K.
In a nutshell, she said while I seem to be able to hear the tones about the same in the right ear as 6 months ago, my Word Recognition Score (WRS) has dropped to 0.
Here is my audiogram from June. Though slightly lower, it is not considered a significant difference.
It took another month to hear back from Dr. M's office. His letter said:
By now it was the middle of the summer. When I think of summer as a kid, I remember what a fun and wonderful time summer was. So now with my own kids, summers are meant to be fun and are the time to do and be with them as much as possible. There was no way I was ready to think about doing anything about Arnold at this point.
Then, come the middle of August, school would start up again and I remember what a very busy time that was last year. I knew it would be somewhat easier with her going into first grade, no half days to start off the year. But it would be busy with her birthday, then Halloween (my favorite holiday), then Thanksgiving and the Christmas holidays. I knew I would not want to do anything during all of this. So, I figured I might as well wait and get another audiogram and MRI in November, when it will have been a whole year.
I had my next MRI on Tuesday May 22. The results came in and the radiologist deemed it "unchanged". Here are her exact words:
Findings: ...Again identified in the right internal auditory canal is an enhancing mass of 8.3mm transverse and 4.8mm AP, unchanged, consistent with an intracanalicular acoustic neuroma.
Impression: Stable 8.3 x 4.8 mm enhancing mass in right internal auditory canal consistent with an intracanalicular acoustic neuroma.
Remember my first scan measured: 8.3 x 4.5 x 6.1 mm, so of course the first question to pop into my head was, "What happened to the third measurement?" Next I thought, "well, 4.5mm to 4.8mm looks like growth to me. "
To answer the first question, I e-mailed back to the ENT at PAMF, Dr. S, and asked him about that third dimension. He was able to have the radiologist re-read the scan and she provided:
Addendum: The craniocaudal dimension of the right intracanicular acoustic neuroma is 5.8 mmSo, now I have a dimension, and it is smaller than the initial reading. Immediately this tells me, two different radiologist I am going to get two different measurements.
I sent a copy of my scans off to Dr. M's (neurosurgeon at UCSF) office and waited to see what he had to say.
In the mean time, I had another audiogram done on June 5th. I very deliberately scheduled my audiogram to be done by the same doctor, Dr. K.
In a nutshell, she said while I seem to be able to hear the tones about the same in the right ear as 6 months ago, my Word Recognition Score (WRS) has dropped to 0.
Just for fun, here is my first audiogram. I circled where you can see my right side hearing is worse (the line is lower) than my left side hearing:
Here is my audiogram from June. Though slightly lower, it is not considered a significant difference.
It took another month to hear back from Dr. M's office. His letter said:
There is no change in the size of a contrast-enhancing mass within the internal auditory canal. I also have a copy of your audiogram from [6/5/2012] which shows that your word recognition is now a 0%. This is not useful hearing.
From my point of view either document growth or loss of useful hearing are both prompts to consider treatment.Again, Dr. M was very concise, one of the factors we were waiting for happened, my hearing is no longer considered useful. Thus, he recommends treatment. Again, I felt this was an answer, I should do something about Arnold, I need to consider radiation or surgery.
By now it was the middle of the summer. When I think of summer as a kid, I remember what a fun and wonderful time summer was. So now with my own kids, summers are meant to be fun and are the time to do and be with them as much as possible. There was no way I was ready to think about doing anything about Arnold at this point.
Then, come the middle of August, school would start up again and I remember what a very busy time that was last year. I knew it would be somewhat easier with her going into first grade, no half days to start off the year. But it would be busy with her birthday, then Halloween (my favorite holiday), then Thanksgiving and the Christmas holidays. I knew I would not want to do anything during all of this. So, I figured I might as well wait and get another audiogram and MRI in November, when it will have been a whole year.
Tuesday, March 5, 2013
An Otolaryngologist, Radiation Therapist and Neurosurgeon walk into a bar...
So now that I
knew I had an acoustic neuroma, my next step was to see a specialist in
this field, an Otolaryngologist. They are ENT's that have specialized
in the surgical aspect of treating diseases of the ear, nose and
throat. I think.
My first stop was to meet with Dr. B at Stanford Medical Center. I went alone and in all I would say the meeting went well. I felt comfortable with him. He seemed very knowledgeable and very patient in explaining the nuances of acoustic neuroma, the factors that play into a decision of what to do about it and the various surgical approaches to treating acoustic neuroma. He referred me to his colleague, Dr. G, that works with the CyberKnife program at Stanford and could give me more information about radiation treatment.
I was so completely overwhelmed with information and the fact that there was no clear path of when or how to treat Arnold that I think my brain once again shut down. I had no idea what to do next.
Dr. B had indicated that I would not be recovering my hearing. This was the first time I had been definitively presented with this outcome. At this point I could not accept or understand that the hearing I had lost in my right ear was gone forever.
Dr. B also said that my age was a huge factor. I am rather young to be diagnosed with one of these. In my lifetime I will have to do something active about it.
At this point Greg stepped in and insisted from now on he would be going to the doctor appointments with me. I think what coherent information I was able to relay to him really hit him how serious this diagnosis is. Where as I was reeling in the unacceptable truths of what was happening to me, he was realizing I would need all the support I could get from him and someone with a more objective view to help me wade through this process.
So, we scheduled a meeting with Dr. G to discuss radiation treatment. She reviewed my scans and basically said I would be a good candidate for radiation treatment. When we left Greg said he felt like he had just sat through a sales pitch. We had no direction on what to do, just two different doctors at Stanford offering to treat it in their own expertise.
More uncertain than ever, I decided to just not do anything for awhile. The holidays were upon us, I wanted to enjoy them.
Sometime around the new year, my oldest brother, Kent, called me up for some reason or another. While we had seen each other quite a bit over the holidays, we had not actually sat and talked about Arnold and what progress I had made. So over this phone call I told him about my doctors visits and how those went.
Now, you must know, my brother works for UCSF Medical Center in Technology Assessment. We also recently had a very bad experience with Stanford Hospital. So while we were talking he started digging around on the internet, quoting me UCSF's rankings on various lists "Best of" lists. UCSF is very well ranked where Stanford was not even on the list.
He was adamant that I should be going to a health care team that would be working together to advise me on a course of action, not just selling me their services. He said he would ask around and find out who I should talk to at UCSF.
I am forever thankful for that phone call. He lit a fire under me and pushed me to expect and demand more from my doctors. It was the push I needed to move my treatment forward.
In the mean time, my sister-in-law, who is very well connected, had been reaching out to her network of professionals on my behalf. She said at UCSF, the team of Dr. L and Dr. M were who her colleagues recommended I go and see. Kent also soon got back to me and seconded that same team is who I should contact and meet.
So the process now was that I could not just call up Dr. M and Dr. L's office and ask for an appointment. I had to ask my original ENT doctor, Dr. S, to refer me to them. He did push back a little and wanted to refer me to the "other" team at UCSF but I insisted these were the doctors I wanted to see and he sent the referral.
Holy smokes are these guys in high demand. The first person to contact me was someone from Dr. L's office. I scheduled my appointment with him for March. It was January at the time. Good thing these things are slow growing!
Dr. M's office contacted me next and he was easier to schedule. I met with him in February. There were many striking similarities between that visit and my visit with Dr. B. The assistant came in first to chat with us and get my scans. She lefts for awhile, then retured with Dr. M. They did a few tests on me to see if there were other symptoms besides hearing loss. They confirmed it looks like an acoustic neuroma and here are your options. We did not even have to ask him what he recommended we do. He up front offered, at this stage of they recommend to watch and wait. Get a scan in May and if it grows or my hearing gets worse we think about doing something.
That was the answer we were looking for. A doctor to definitively say, "this is what we recommend you do." Not a doctor that says, "well, you could do this or this or this...it's up to you."
So, even before meeting with Dr. L, we knew we would be watching and waiting and getting a fresh series of scans and tests in May. What a relief to have a plan of action, if only for the next three months.
My first stop was to meet with Dr. B at Stanford Medical Center. I went alone and in all I would say the meeting went well. I felt comfortable with him. He seemed very knowledgeable and very patient in explaining the nuances of acoustic neuroma, the factors that play into a decision of what to do about it and the various surgical approaches to treating acoustic neuroma. He referred me to his colleague, Dr. G, that works with the CyberKnife program at Stanford and could give me more information about radiation treatment.
I was so completely overwhelmed with information and the fact that there was no clear path of when or how to treat Arnold that I think my brain once again shut down. I had no idea what to do next.
Dr. B had indicated that I would not be recovering my hearing. This was the first time I had been definitively presented with this outcome. At this point I could not accept or understand that the hearing I had lost in my right ear was gone forever.
Dr. B also said that my age was a huge factor. I am rather young to be diagnosed with one of these. In my lifetime I will have to do something active about it.
At this point Greg stepped in and insisted from now on he would be going to the doctor appointments with me. I think what coherent information I was able to relay to him really hit him how serious this diagnosis is. Where as I was reeling in the unacceptable truths of what was happening to me, he was realizing I would need all the support I could get from him and someone with a more objective view to help me wade through this process.
So, we scheduled a meeting with Dr. G to discuss radiation treatment. She reviewed my scans and basically said I would be a good candidate for radiation treatment. When we left Greg said he felt like he had just sat through a sales pitch. We had no direction on what to do, just two different doctors at Stanford offering to treat it in their own expertise.
More uncertain than ever, I decided to just not do anything for awhile. The holidays were upon us, I wanted to enjoy them.
Sometime around the new year, my oldest brother, Kent, called me up for some reason or another. While we had seen each other quite a bit over the holidays, we had not actually sat and talked about Arnold and what progress I had made. So over this phone call I told him about my doctors visits and how those went.
Now, you must know, my brother works for UCSF Medical Center in Technology Assessment. We also recently had a very bad experience with Stanford Hospital. So while we were talking he started digging around on the internet, quoting me UCSF's rankings on various lists "Best of" lists. UCSF is very well ranked where Stanford was not even on the list.
He was adamant that I should be going to a health care team that would be working together to advise me on a course of action, not just selling me their services. He said he would ask around and find out who I should talk to at UCSF.
I am forever thankful for that phone call. He lit a fire under me and pushed me to expect and demand more from my doctors. It was the push I needed to move my treatment forward.
In the mean time, my sister-in-law, who is very well connected, had been reaching out to her network of professionals on my behalf. She said at UCSF, the team of Dr. L and Dr. M were who her colleagues recommended I go and see. Kent also soon got back to me and seconded that same team is who I should contact and meet.
So the process now was that I could not just call up Dr. M and Dr. L's office and ask for an appointment. I had to ask my original ENT doctor, Dr. S, to refer me to them. He did push back a little and wanted to refer me to the "other" team at UCSF but I insisted these were the doctors I wanted to see and he sent the referral.
Holy smokes are these guys in high demand. The first person to contact me was someone from Dr. L's office. I scheduled my appointment with him for March. It was January at the time. Good thing these things are slow growing!
Dr. M's office contacted me next and he was easier to schedule. I met with him in February. There were many striking similarities between that visit and my visit with Dr. B. The assistant came in first to chat with us and get my scans. She lefts for awhile, then retured with Dr. M. They did a few tests on me to see if there were other symptoms besides hearing loss. They confirmed it looks like an acoustic neuroma and here are your options. We did not even have to ask him what he recommended we do. He up front offered, at this stage of they recommend to watch and wait. Get a scan in May and if it grows or my hearing gets worse we think about doing something.
That was the answer we were looking for. A doctor to definitively say, "this is what we recommend you do." Not a doctor that says, "well, you could do this or this or this...it's up to you."
So, even before meeting with Dr. L, we knew we would be watching and waiting and getting a fresh series of scans and tests in May. What a relief to have a plan of action, if only for the next three months.
Sunday, March 3, 2013
What do you do about someone like Arnold
As defined on the Mayo Clinic website:
Radiation and surgery each have their own special circumstances and nuances. There are different approaches to each and different risks involved. Simply put, choosing to eradicate Arnold with either of these approaches is not an easy decision. ANA has a pretty good overview of the treatment options.
Radiation
The thought of radiation itself scares me. Most likely a completely irrational fear, but my sense of radiation is if all else fails, then you radiate. So, I admit that my research on radiation is minimal. Here is what I think I know: the general idea for treating with radiation is to aim a bunch of non-damaging radiation beams from all around your head at the tumor. Where the beams intersect is where the tumor is and it gets hit with a high, lethal dose of radiation. The rest of the tissue that the radiation passes through is not as damaged. This treatment is either done over a few days or a few weeks depending on where you go.
The technology that does this is either the Gamma Knife, which delivers beams all over your head all at once, or the CyberKnife, which moves around your head zapping beams at your tumor from all different angles.
The way radiation works is it messes with the DNA of your cells so the cell can no longer replicate. You can see why this is a great idea for cancer cells; cancer cells are quickly replicating cells. If their DNA is corrupt and they can no longer replicate, the threat of the cancer is diminished.
For acoustic neuroma, after radiation treatment, what tends to happen is the tumor actually grows for awhile. The radiated spot has now been damaged, so your body responds. It takes about 3 years to know how effective the radiation treatment is.
Could the radiation cause the tumor to become cancerous? It's the same percentage as if you did nothing at all.
Outcomes from radiation are actually very good and very encouraging. After the initial swelling, most people experience the tumor shrinking back to the original size or even smaller than it was pre-radiation treatment.
One of my biggest reserves is they only have outcome data out to about 20 years. In 20 years I will not even be 60 yet. I plan on living way past 60, I really would not like some crazy thing to creep up from having radiation treatment now.
In a nutshell, a contact of mine, Dr. C, put it very succinctly:
Surgery
I believe it is called microsurgery. This is the well known traditional method of go in and cut out what is wrong. While the theory of surgery is easier to grasp and accept, you have to remember this tumor is basically growing within a bone in my skull; not within my skull, not next to it, but right inside one of the hardest bones in the body. It is an extremely inconvenient location.
There are three different approaches to surgically removing an Arnold: translabyrinthine, retrosigmoid/sub-occipital and middle fossa.
When I had some hearing left, the retrosigmoid approach was recommended as this one is the best chance at preserving what hearing is left. This approach requires drilling into your skull to where your brain is, pushing your brain aside so the neurosurgeon can get to where the tumor is.
Now that I have no useful hearing left, the translabyrinthine approach is the recommended approach. This one requires about 2+ hours of drilling through the temporal bone, the hardest bone in the body, to get to the tumor. They remove certain hearing organs so they guarantee deafness in that ear.
The middle fossa approach I do not really know about since it was never an approach recommended for my case.
Again, Dr. C summed it up very well:
Acoustic neuroma is a noncancerous (benign) and usually slow-growing tumor that develops on the main nerve leading from your inner ear to your brain.Other excellent references for information about acoustic neuroma are the Acoustic Neuroma Association website and the Stanford Medical Center website. The important things to note are that is it non-cancerous, slow-growing and is located in a rather unfortunate spot. These factors translate into some important points:
- Well, it's not cancer.
- Slow-growing so there is no rush to decide or do anything about it.
- It is growing, so at some point in my lifetime I will have to do something about it.
- It's location makes treatment rather tricky.
- Watch and Wait
- Radiation
- Surgery
Radiation and surgery each have their own special circumstances and nuances. There are different approaches to each and different risks involved. Simply put, choosing to eradicate Arnold with either of these approaches is not an easy decision. ANA has a pretty good overview of the treatment options.
Radiation
The thought of radiation itself scares me. Most likely a completely irrational fear, but my sense of radiation is if all else fails, then you radiate. So, I admit that my research on radiation is minimal. Here is what I think I know: the general idea for treating with radiation is to aim a bunch of non-damaging radiation beams from all around your head at the tumor. Where the beams intersect is where the tumor is and it gets hit with a high, lethal dose of radiation. The rest of the tissue that the radiation passes through is not as damaged. This treatment is either done over a few days or a few weeks depending on where you go.
The technology that does this is either the Gamma Knife, which delivers beams all over your head all at once, or the CyberKnife, which moves around your head zapping beams at your tumor from all different angles.
The way radiation works is it messes with the DNA of your cells so the cell can no longer replicate. You can see why this is a great idea for cancer cells; cancer cells are quickly replicating cells. If their DNA is corrupt and they can no longer replicate, the threat of the cancer is diminished.
For acoustic neuroma, after radiation treatment, what tends to happen is the tumor actually grows for awhile. The radiated spot has now been damaged, so your body responds. It takes about 3 years to know how effective the radiation treatment is.
Could the radiation cause the tumor to become cancerous? It's the same percentage as if you did nothing at all.
Outcomes from radiation are actually very good and very encouraging. After the initial swelling, most people experience the tumor shrinking back to the original size or even smaller than it was pre-radiation treatment.
One of my biggest reserves is they only have outcome data out to about 20 years. In 20 years I will not even be 60 yet. I plan on living way past 60, I really would not like some crazy thing to creep up from having radiation treatment now.
In a nutshell, a contact of mine, Dr. C, put it very succinctly:
The positive sides of radiation are: no intracranial surgery, it's a one time visit with no hospitalization, generally your facial nerve (which controls that half of your facial movement) will remain normal.
The negatives are: it does not make the tumor go away, it just prevents growth. you are committed to annual mri's to make sure it's not growing. also, if you are young, there is the possibility that radiation increases your risk for other malignancies (small risk but real).
Surgery
I believe it is called microsurgery. This is the well known traditional method of go in and cut out what is wrong. While the theory of surgery is easier to grasp and accept, you have to remember this tumor is basically growing within a bone in my skull; not within my skull, not next to it, but right inside one of the hardest bones in the body. It is an extremely inconvenient location.
There are three different approaches to surgically removing an Arnold: translabyrinthine, retrosigmoid/sub-occipital and middle fossa.
When I had some hearing left, the retrosigmoid approach was recommended as this one is the best chance at preserving what hearing is left. This approach requires drilling into your skull to where your brain is, pushing your brain aside so the neurosurgeon can get to where the tumor is.
Now that I have no useful hearing left, the translabyrinthine approach is the recommended approach. This one requires about 2+ hours of drilling through the temporal bone, the hardest bone in the body, to get to the tumor. They remove certain hearing organs so they guarantee deafness in that ear.
The middle fossa approach I do not really know about since it was never an approach recommended for my case.
Again, Dr. C summed it up very well:
surgery postives: the tumor is removed and you don't have to worry about it for the rest of your life.
negatives: risks of intracranial surgery including meningitis (1% risk), risk to your facial nerve (small risk in low 1-2% range but still more than with radiation).I think the hardest thing to focus on when thinking about treatment is that hearing is not the top priority. While that is the obvious symptom, I have to somehow get over the fact that my hearing is lost to me and focus on the important thing: this tumor is growing and it is growing straight for my brain stem. Yes, this thing can kill me given enough time. So I need to think about treatment to save my life. The loss of hearing is just a minor issue.
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