a "newbie's" guide to treatment specialists (radiosurgery and microsurgery)

[ppearl214]

In an effort to help newbies here that may have options in their AN treatments, I wanted to start a thread that outlined some of the processes and teams that you may be meeting during your AN journey as you investigate the best possible treatment for you. Now, there are those that may not have options and have to go immediately into micro-surgery, so I’m hoping that micro-surgery patients will also add to this about the types of teams that treated them and how they met, and the processes they could/would endure.

I will share here from a radio-surgery (Cyberknife) standpoint based on information provided by Dr. Clinton Medbery on the CK support board, as well as my own experience.

Cyberknife:

There is a full team mgt of all Cyberknife patients which includes radio-oncologist, neuron-oncologist, neurosurgeons, etc.  Dr. Medbery clearly outlines the team involved in this post on the CK Support board:
http://www.cyberknifesupport.org/forum/default.aspx?f=16&m=6800.   (FYI, this is a post he did in regards to a potential patient trying to confirm qualifications of CK treatment specialists, thus, Dr. Medbery’s comments on certifications and licensing).


“1. Radiation oncologist. This person is a physician who has had an internship and at least three years of post-internship training. You should try to have a board certified radiation oncologist. Board certification does not guarantee excellence, and lack of it does not guarantee lack of ability, but overall board certification is probably better. The radiation oncologist is the "captain of the ship", and it is his/her responsibility to be sure that all of the other team members are capable of performing their jobs.

2. Radiation therapists. These are generally have a bachelor's degree in radiation technology, although some do not. Many, if not most states, and most radiation centers, require that they be licensed. Licensure does not guarantee competence etc.

3. Nurse. Nurses may be either RN's of LPN's. RN's may be either associate degree or bachelor's degree graduates. The differences reside more in the individual and in the training program, not so much in the degree itself, at least in my experience. They are not generally directly involved in the radiation treatment process, but may administer medications and so forth. They are often involved in patient education and help in things such as skin care.

4. Dosimetrists. They are generally radiation therapists who have received additional training in the use of computers to set up treatments and calculate doses to tumors and various normal structures. They may have a certification as a CMD (Certified Medical Dosimetrist). Again, having it does not guarantee excellence, and lack of it does not mean they are not excellent. We have worked with both certified and non-certified dosimetrists at various times. The key ingredient is a careful oversight program.

5. Medical physicists. These are physicists, almost always with at least a master's degree or higher, who have special training and experience in various aspects of medical applications of radiation. They are in charge of quality control in many ways (although quality control is an all-hands evolution, to use the old Navy term). They calibrate the machines, verify dose calculations, perform special radiation measurements, and review the charts for correctness at least weekly.

6. Receptionists, secretaries, medical transcriptionists, etc.�


Please know this was also the same team approach used on me at BI.  Not all patients are good candidates for CK, thus, the reason they needed everything far in advance (your films, all MRI reports, hearing tests, etc) is the following reason:  The CK team takes all the data -- the films, notes, etc -- and reviews them as a team to ensure you are a good candidate for CK.   Once confirmed you are a good candidate, they put together your proposed treatment plan.  At the time of your “pre-planningâ€? appt with the team, they sit down with you and explain, based on all data rec'd in advance, what they have mapped out for you, should you choose to go CK.  The team approach is used (as you can see by Dr. Medbury’s comments above) to ensure the best treatment plan.  This team approach is used by all CK treatment centers around the States (ie: Stanford, Barrows, OKC, BI, etc) from what has been shared with me by other CK post-treatment patients.

Now, I do know that this is fairly close to the same team approach used in FSR/Novalis as I met with the same kind of team at Brigham/Woman’s.  They also required everything in advance so they could see if you were a good candidate for FSR.  Any others that have had FSR treatment, can you please elaborate on what occurred at your pre-treatment appt and how your approach was given to you?

So, for any other “postiesâ€?, can you please share what kind of treatment teams you are meeting/dealt with, what did they require in advance, what treatment specialists made up your team and how was the team approach handled by the lead physician?  This is for all posties, regardless of micro-surgery or radio-surgery.

My hope by doing this thread is that newbies can better educate themselves as to what to expect during consultation, what kind of physicians/ treatment specialists that will be involved with the treatment process, etc.    Kind of a guide to help newbies understand their investigative process.  For me, my attitude is… if someone is going to be playing around with my head/brain, not only should it be a team effort but I want to know what kind of treatment team they are.

[shoegirl]

Phyllis - great thread!  Hope some of those who have had microsurgery will respond with their experiences.

I too had a team approach with my planning and treatment. My doctors included a Neurosurgeon, Neuro-ENT, and a Radiation Oncologist.   And of course the whole CK radiation team you referenced above.   I really liked the team approach as they met to discuss my case and each gave me a seperate recommendation.  And all were involved in the planning and treatment.  And follow-up.  This really helped me in my decision process. 

For me, the decision process was the hardest part, and getting lots of opinions was key.

   

[Captain Deb]

Microsurgery patient here. After researching my options for 2 weeks following my diagnosis, I decided to go the surgical route. I will not start a debate here on whether anyone should or shouldn't have surgery for a small tumor. Surgery for me was a better "fit." I didn't  consult with multiple neurosurgeons, I just found what I considered to be the best facility in the country that would also take my insurance.  I also had family in the area who could help me recouperate.

 I placed a call to House Ear Institute and within 15 minutes I was talking to the neurosurgeon who ultimately was part of the team that treated me. I told him my tumor size and what my hearing level was and he generally outlined the surgery for me. The next dayI had my films and hearing evaluation  sent there by my local doc.  As soon as HEI recieved them, I was put in touch with a surgical counsellor who set a surgery date 2 months away, shepherded me through all the rigamarole involved including self-donating my blood which the Red Cross shipped cross-country for free. HEI deals with out-of-state and even out-of-country patients all the time.  In the meantime I recieved numerous information packets from House concerning what to expect during my surgery and a detailed explanation of the surgical approach. I spoke on the phone to Chris, my surgical counsellor a number of times.
 
The day before my surgery I met with both surgeons of the surgical team, an internist, and the anesthesiologist's  assistant and had a general physical, hearing test, ABR, bloodwork, and chest X-ray.

Capt Deb

[lmurray69]

This is a great thread and the best is running it..I like all the info we get here I had gammaknife,,

[Larry]

Further on the surgery front.

For newbies, there are three options.

1. Translab - meant to get all the tumor out as surgeon has better view of growth than other options. Guaranteed full hearing loss in AN ear

2. Middle Fossa - Surgeons identify that this is a less invasive approach than translab and is meant to preserve some hearing (usually at the level you have at time of surgery)

3. Retrisigmold - similar to Middle Fossa

I had middle fossa and my process was as follows:

1. Noticed hearing degradation. Went to GP who thought I had a blocked Eustation tube (from flying). After 2 weeks, with no change, he referred me to an ear specialist.
2. the ear specialist ran some tests which were inconclusive and sent me for an MRI
3. The MRI indicated a growth so he referred me to an ENT specialist
4. The ENT specialist instantly recommended surgery - did not discuss alternatives, told me that I'd have headaches for a few months post surgery.
5. had a pre admission checkup at the Hospital where surgery was planned
6. Met the anaethatist who discussed what he was going to do (double dutch to me)
7. Rolled up for Surgery to the hospital the night before (no eating for 12 hours pre surgery)
8. Had surgery
9. In intensive care for 24 hours - massive nausea attacks. I was low on potassium so they tried to put that through the drip - it hurt like hell
10. In ward for 4 days
11. Recovering at home for 5 weeks before back at work.

Suggestions

1. Get multiple opinions on either surgery or radiation
2. If surgery, get a commitment from surgeon as to whether they think they can get all the tumor out
3. For surgery, enquire about dry eye, facial paralysis, CSF leak, nausea and headaches - as these items seem to be quite common occurances (not all of them all the time). You need to understand the potential from happening and what their impacts on you are and the treatment options - ask the surgeon.
4. The other option of course is Watch and Wait. If your tumor is small enough and not growing and not causing any effects on your body then you don't need to do anything but check with specialists first.
5. Post surgery - have regular MRI's - at least annual to make sure that tumor doesn't grow back or if it does, at least you know and can get onto it early.

Laz

[Gennysmom]

I had translab.  My team consisted of my specialist ENT (specialist because he was the only one in my HMO that deals with ANs), a neurosurgeon, and the lead surgeon, a neurotologist.  All of these should be board certified, you need to check that, and my ENT is also a FACS member (you can see if your surgeon is by going to facs.org).  I found out about my AN by finally making an appointment with an audiologist, who sent me off to an ENT, who sent me for an MRI with contrast, which finally got me to the specialist ENT.  I was offered the opportunity to consult with a radiologist, but due to the size of my tumor (3.1 plus) they reccommended surgery, and I agreed.  Because of my age and good health, I didn't do a pre-op appointment as most people do.  The day of surgery I was brought from the surgery waiting room to an intake bay, where a RN put me on an IV and an anesthesiologist came by to talk about the general anesthesia.  He gave me a sedative, then walked me to the surgical room, where there were about 8 people flurrying about.  I saw all three surgeons as I climbed on the surgical table, before I was out for 6 1/2 hours.  I know that my ENT did the opening, the Neurotologist did the surgery and closing with the neurosurgeon there to assist.  The Translab incision is a semi-circle very close to the back of my ear, where they drilled through the mastoid bone and took out my inner ear guts to get to the nerves involved (in my case 5, 7, 8, 10, 11 and 12), severing my 8th nerve to remove the tumor.  Overnight in CCU, then in my own room on the neurology floor for 3 days.  I do my follow-up with the ENT.   

As this site says over and over, you need to find a surgeon who is very experienced in this surgery, especially when you have a large sticky tumor like mine was.  My lead surgeon does this surgery 1-2 times a week.  Whether they be a Neurotologist, a Neurosurgeon, an Otolaryngologist (ENT), whatever, it's the experience and board certification that counts.   I also found it comforting that my lead surgeon was very familiar with everyone in the AN community, he knew everyone at House and was recently asked to speak at a symposium in Europe about his expertise.  He did a great job on my surgery and I seem to be right in line with his recovery plan (in other words, he did not lead me to believe that everything would be peachy in a couple weeks).

The other thing I would watch for is that even though I was on a neuro-floor after I got out of CCU, and all the nurses there are trained for neurology patients, there are some that just don't seem to know what they're supposed to do or don't care.  They should be coming in every 2-4 hours or so to do neuro tests which can consist of squeezing their fingers, pushing and pulling with your toes, holding your arms up and checking your eyes.  Just because a nurse is or isn't doing something, doesn't mean that they are right.  Check with your doctor when they make rounds as to what your specific care is or should be. 

Lastly, the PT people should come to see you and get you doing vestibular exercises ASAP (they came while I was still in CCU), which are generally following a pen with your eyes and making you sit and stand up, and if you have stairs at home, they'll want you to try the stairs before you are discharged.  This can be very hard and they can be mean to make you do it, but it really does help.