Wednesday, September 28, 2016

Second Consult

Today I met with Dr. Lupo of Rocky Mountain Ear Center.  I am happy to say that I have chosen him and his team to perform my surgery.

I was scheduled to be to my appointment at 8:45 in the morning but the day before the office called and asked me nicely if I would mind coming later on at 3 so they could accommodate an emergency situation.  I of course said yes because I would hope the same would be done for me.  SO my husband and I waited and finally went back about 3:20, this made me think that they squeezed me in to make sure I didn't have to move my appointment to an other day.  I again did a hearing test and had similar results from the one the previous appointment. My right ear is at a '0' and my left ear is at a 15 on the  Hearing Test Results Form dropping lower for low tones. 

17.63mm x 19.64mm x 15.31mm

We went straight in to see the doc.  I was so happy to have my husband there again, it just puts me at such ease. So please remember do not go to these appointments alone, Sean asked a few new questions that were very helpful in guiding us to some answers we didn't even realize we needed.  The doctor was really good about showing us diagrams and explaining in great detail why certain approaches would be better for me over others.  I appreciate how patient these doctors are with answering questions and taking their time to truly be there for the patient!!  He even measured my MRI scan and printed it out for me so that I could really see the size of Arnold.

Dr. Lupo proceeded with sending my information to the scheduling assistant to begin the process of connecting with the insurance company, in the mean time he will get with the neurosurgeon to find a date for surgery.  He pulled out his phone right then and there and looked at his calendar and said he thinks the last week of October or the first week of November should be available.  I will meet with the neurosurgeon once the scheduling assistant gets everything set with the insurance company.  I was very happy that he didn't make me wait until I met with the neurosurgeon and moved forward with getting things in motion.

Dr. Lupo trained with the well known Dr. Friedman and Dr. Brackmann at the House Clinic and my confidence in his skill is high.  He quite literally wrote the chapter on preventing CSF leaks in the manual.  We have to play the waiting game a little more but this time around I don't feel as stressed because there is more of a plan in place.  I keep thinking to myself how long everything is taking but in reality it hasn't even been a month since I found out that I had a brain tumor.  I feel blessed that I don't have to wait months and months for answers like some people do.  BE PUSHY don't let doctors put you aside and not make you a priority, at the same time be respectful that they are very busy people and do the best they can but a squeaky wheel gets the attention.

Here are the questions we had to ask and the answers in red for the ones we got.
 How many AN's have you removed? How?
A. 100’s
      How long is the wait for surgery? 
A. End of Oct beg of Nov
    What specific training in AN surgery have you had? 
A. Trained at House Clinic
        What microsurgical approach do you recommend given my tumor
        size, location, age, health and level of hearing? Why? (If the tumor is under 2.5 cm, ask about radiation therapy.
A. Translab because of size
    How many ANs similar to mine have you removed with the surgical approach you recommend? 
A. Most common
    Do you electrically monitor the facial nerve during surgery? (If the answer is no, look elsewhere.
A.  Yes
      Will a team of physicians with more than one specialty do this surgery? (The norm is a Neurologist and a Neurosurgeon. Some hospitals assign an internist to monitor your overall health before and immediately after surgery.
A. Yes

      For a tumor the size and shape of mine, what have been your results with respect to preserving permanent facial function? (There is actually a rating system for retention of long-term facial function, called “the House-Brackmann scale. Your surgeon should be familiar with this. You can also Google this to learn more.) 
           A. Not many cases of CSF leak, not common with translab for paralysis but still possible
      Do you expect there be temporary facial paralysis, and if so, to what degree? (There usually is some.) 
A. Always possible
      How long is your typical surgery for a tumor like mine?(The shorter you’re under anesthesia, the better, and your recovery could be somewhat less difficult.
A.  8 hours
      Do you anticipate total tumor removal with a single operation? If not,what are my follow-up options? Surgery? Radiation? (This is important. Unless yours is an unusually complicated case, a single surgery to completely remove the tumor is the norm for the best AN surgeons. Unless there is a very good reason otherwise, one surgery is the only acceptable answer.) 
A. Yes unless facial nerve is compromised
      What is the likelihood that my remaining hearing will be preserved after this surgery? (With Translab, it is zero. With Retrosigmoid and Middle Fossa, it is anywhere from 20% to 60%, depending on location, pre-existing level of hearing loss, and experience of the surgeon. Discuss the pros and cons of your situation, and the trade-offs relative to the side effects of each approach.) Google “acoustic neuroma surgical approaches.” 
A. Zero
      If hearing preservation is unlikely,will you honor my wishes not to cut the facial nerve under any circumstances, even if it means leaving a sliver of tumor behind? (The ramifications of cutting the facial nerve are substantial, leaving the AN side of your face, including your eye, essentially paralyzed. There are follow-up surgeries that can restore some mobility, but in my opinion you want to avoid having your facial nerve severed. Period. Unless your life depends on it.) Google “acoustic neuroma facial paralysis.” 
A. Will always try and preserve facial nerve
      In your experience,when leaving in small pieces of residual tumor on the brainstem or facial nerve, does tumor growth usually stop? 
A. In most cases the tumor does not grow back
      Given the approach you’ve recommended, what has been your rate of surgical complication with respect to stroke, infection, bleeding, cerebral spinal fluid (CSF) leak, eye issues, and headaches? 
A.  Not CSF leaks since at this practice, actually wrote the chapter on preventing CSF leaks during this surgery (literally)
        What do you do to minimize post-surgery headaches? NOTE: If you have a history of headaches, discuss this with your physician.
A. Choosing translab over retrosig limits headaches, pain management as well
      How much discomfort should I expect from headaches and from the incision after surgery? 
      Does your hospital have a neurological intensive care unit?
A. Yes, plan to spend at least one night
      About how many days will I be in the hospital? 
A. up to 5 days pending complications
      How often should I schedule follow-up MRI's after treatment? 
A. 6 months, 1 year 2 years less over time
      Will I need follow-up care? Physical Therapy or Vestibular Therapy referral?
                If you're comfortable with the surgeon and the answers, get at least three references, preferably people of similar age, health, and with tumor size. 
      All other things being equal, when can the surgery be scheduled? 
A. Will reach out to the neurosurgeon immediately

         Is there anything that could prevent surgery from happening once it is
A. Viral cold, digestive disruptions

         How much will you need to shave my head?
A. about 3 inches by 6 inches

         How close to the brainstem is the tumor located?
A. compressing but not effecting the brainstem

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