Friday, December 30th

Wednesday and Thursday night were both uneventful, no meds excepting the Diamox, so no stomach issues.  Still lethargic, and still have a low appetite.  I weighed 232 pounds on Monday, December 5^th, at the pre-surgical exam Tuesday, December 27^th; I weighed in at 220 pounds.   Heck of a weight loss plan!

I shaved my head yesterday, and discovered it’s harder than it might seem.  I ended up with some nicks, strawberries and bleeding.  I looked on line for information and it seems that this is normal for a newbie to have these problems.  One of the rules prior to surgery is no shaving the morning of.  They don’t want any open cuts that bacteria can get into.  So, I think I’ll shave my head for the last time on Monday just to be safe!

I’m 5 days from the surgery!

Got my hair cut today!

Wednesday, December 28th

Had a very tough night!  About 4:00 yesterday afternoon, my headache had escalated to extreme, so I took a Norco and took a 2-hour nap.  My headache was still with me when I woke, but was manageable.  By bedtime the headache was again throbbing, decided to take a Norco before bed, as I had no side effects earlier in the evening.  Big mistake!  My stomach was on fire all night, slept in spurts of 25-30 minutes, finally got up at 5:00 to set up.  It’s now 8:15, just had some breakfast and Diamox.  I have to drive downtown to pick up my paycheck, then the laundry and back home before my hair cut.  I still have a slight headache, but will not take any more pain meds.  I discussed this condition with the doctor during my pre-surgical exam, but she didn’t have any suggestions.  On the bright side, I’m now a week away from the surgery!

Tuesday, December 27th

Had a rough night last night.  I went to bed with a slight headache and woke several times, the last at 3:00 am, when I just couldn’t sleep anymore.  I got up at 5:00, but couldn’t have my coffee, as I had my pre-surgical exam this morning.  Got a bowl of Cheerio’s, half a Banana and a glass of juice to make the Diamox go down easier.

Went to Outpatient Processing at St Vincent at 9:45, got my paperwork straight and waited for a nurse, which didn’t take very long.  Got all the questions out of the way and on to the EKG and blood work.  After all the testing, I was told to wait and a doctor would see me.

Doctor came in and reviewed the blood work and said my clotting was normal.  She was surprised that my red cell count was very high, and was last Wednesday when my family doctor took blood for my heart check.  So, the doctor ran through all the possible causes:

·      Low oxygen – did I suffer from sleep apnea, no

·      Kidney problems – no

·      Steroid use - no

·      Heart disease – yes, but no issues

·      Kidney cancer – no

·      Smoking – no

I think it’s the Diamox and the doctor agreed.  It won’t stop the surgery, but she thinks we should follow it up after the surgery.  So, I am cleared for the surgery! 

I stopped by Walgreen’s and bought a Head Blade Razor, and Dick’s for some new Beanies.  I called my local barbershop and have an appointment to get my head cut and shaved tomorrow!  My daughter Gwen is going with me to get some pictures of the occasion.

So, it’s almost 2:00 pm, I’ve got most everything done for today, still have a headache, but it’s manageable without meds!  I can’t wait to get back to normal activities!

Monday, December 26th

Not much to report.  I’ve slept well the past couple nights, no more nausea during the night.  I’ve had some light headaches early in the morning, and after doing too much around the house.  Still lethargic and have little appetite.  A couple new things started over the weekend, tingling in my extremities, and numbness in my face.  I still think this is all attributable to the meds!  I am scheduled for a pre-surgical exam at St Vincent tomorrow, getting closer to my surgery.

Friday, December 23rd

Another good nights sleep.  Had my head on my pillow all night.  Went to bed at 11:00, and went right to sleep.  I woke at 4:45 with a mild headache across the top of my forehead.  Couldn’t get back to sleep, so got up, had some juice and watched the morning news.  Off to work at 8:00, had three stops on the way in.  Worked in production until our pitch in at 12:00.  Had lunch then gathered my database and information I’ll need to work at home while I’m recovering.  The headache left me after lunch and didn't return.

I received a notice from the Brain & Spine Group regarding payment for the surgery.

Your upcoming surgery is tentatively scheduled for 1/04/2012.  We believe the your surgery will cost approximately $10,092.00.  We have learned that your health benefits plan will only cover a portion of our surgeon’s fees.

Based on your benefit information supplied to us from your insurance carrier, we estimate that you will be responsible for the balance of $608.46.  Your insurance carrier does not guarantee payment for this service and this estimate balance will vary based on your benefit plan at the time the claim is processed by your insurance carrier.  Please remember that this is an estimate. You may be responsible for additional amounts after your insurance company processes your claim. All overpayments will be refunded to you within 30 days after your insurance payment is posted to your account.

Our Financial Counselors will be glad to help you arrange payment for your portion of the bill prior to your surgery. Ideally, your portion of payment should be paid prior to your scheduled surgery.  For your convenience, we accept MasterCard, Visa, Discover, CareCredit and American Express credit cards.  If you are mailing your payment prior to your surgery, payment should be mailed to: ______________________, with a copy of this letter.  For questions, you may call 000-000-0000.  We will be happy to assist you.

Following your surgery, you will receive an explanation of benefits from your health benefits plan that confirms our surgeon’s fees. The portion reimbursed by the plan and any balance due to ___________________ that remains your personal responsibility at that time.

So, need to get that paid prior to the surgery!

Also in today’s mail was the Invoice for the ER visit:

Service                            Submitted            Plan                           Co-Pay

                                         Charge                Allowance

Diagnostic                       64.00                    38.16                             5.72

CT Scan                           2,572.00              1,533.68                        230.05

Medical Care                   1,158.00              690.52                           103.57           

MRI                                 3,593.00              2,142.51                        321.37

Prescription Drug            157.60                 93.98                             14.09

Prescription Drug            56.15                   33.48                              5.02

Prescription Drug            50.39                   30.05                              4.50

Prescription Drug            206.40                 123.00                            18.46

TOTALS                          7,857.54              4,685.46                        702.78

I am extremely blessed to have a good medical plan!

Thursday, December 22nd

I slept GREAT last night, actually had my head on my pillow all night, no nausea, no headaches.  Worked all day, even put in a little OT!  Just took a ham out of the oven for our office pitch in tomorrow.  I’m off the pain and nausea meds and I feel good.  Still get the Zombies for a couple hours or so after a dose of Diamox, but I'm dealing with it!

Wednesday, December 21st

Still have a low appetite, still preferring bland foods, but still having late night indigestion, and still in a Zombie state most of my waking hours.

Fell asleep at 11:15 last night, woke up at 12:30, then watched the clock until 3:30, then slept, off and on until 7:00.  Had a mild headache that required no meds.  I did get up at 1:00 and took 2 Promethazine tablets in the hopes of curbing the burning in my stomach, didn’t work.  This is acid reflux at it’s best!  I used to have acid reflux before my heart problems, and haven’t had them since I changed my diet to low fat, low salt, and no sugar.  Heart disease will do that to you!

To recap, I was on 1000mg of Diamox daily, with doses of Vicodin, or Norco as required for headache pain, followed by Zofram or Promethazine as required for nausea.  The Zofram was ineffective and my neurologist cut my Diamox to 500mg per day and prescribed Norco for headache pain.  The first night of 500mg Diamox, the severe headaches returned, requiring more Norco and now Promethazine.  I decided to put myself back on 1000mg of Diamox, as I prefer the nausea and indigestion to headaches; requires less pain meds.

I have a call into the Neurologist office to see if there is anything they can give me to aid in my sleep, beside the Norco.  Maybe something that would knock me out for 6-8 hours?

I did go to work today, got in at 8:30 and worked till 3:30 and was able to keep up pretty well.  Right now I’m walking in my sleep, but afraid to lay down too early and end up again tonight.

I’ve been reading some of my entries and it appears I have been wandering a little, but that’s where I’m at right now, not all that together!

Tuesday, December 20th

My appetite is low, which is not all that bad.  I’m guarded about what I eat, choosing bland foods to avoid indigestion.  I am now very constipated, probably from the meds.  Will buy some over the counter meds later today. 

Saturday night I waited until bedtime before taking the Promethazine and had some nausea for the first hour.   After the nausea subsided, I slept through the night.  Got up around 8:30 Sunday, and by 12:45 I developed a headache across the center of my forehead.  It got worse in the afternoon, so I took a Norco and a Promethazine and took a nap.  I awoke at 5:45 with the headache, but not like before, more of a constant pressure.  I had the headache all evening and into the night.  I can’t help but think it’s the half dose of Diamox.

Sunday night was pretty tough, had very bad nausea.  Could not find comfort regardless the position, so I just watched the clock until around 3:00, and then fell asleep until 9:30.  When I woke up I was very disoriented and was loosing my balance.  Took me about an hour to get out of the house, but decided I better get to work. 

Once at work, I just couldn’t concentrate on anything, found myself bouncing from project to project, not getting much done.  Still having balance issues as well.  I left work at 3:00, just couldn’t stay focused.

I went back to a full dose of Diamox on Monday, thinking if the headaches go away, then I’ll know its pressure caused by the tumor. 

It’s now Tuesday morning, and I decided to stay home today.  I slept pretty well last night, did not take any Norco, but did take the Promethazine.  I awoke a few times; mainly when I changed positions in bed, my stomach was on fire.  I keep water by my bed and a drink would always help.

I find myself very lethargic, which is not the way I would have ever describe myself before the meds!

Saturday, December 17th

Between the ½ dose of Diamox and the Promethazine, I slept 12 hours last night!

Friday, December 16th

The Zofran is not working!  I slept 4 hours Wednesday night before the stomach pain and indigestion made me set up.  May have slept another hour while setting up.  Last night was the worst.  I slept until 1:30, then the nausea, gas and pain set in.  Tried to prop myself up with extra pillows, just didn’t work.  Tossed and turned until about 3:30, then got up and sat up in a chair until morning. 

Called Dr Young’s office and described what is going on.  He cut my Diamox in half and called in a prescription for Promethazine, which I will try tonight.

Promethazine is a first-generation antihistamine of the phenothiazine family. The drug has anti-motion sickness, antiemetic, and anticholinergic effects, as well as a strong sedative effect and in some countries is prescribed for insomnia when benzodiazepines are contraindicated.

Wednesday, December 14th

I received confirmation of my pre-surgical examination.  Have to be at St Vincent on Tuesday, December 27^th at 9:45.  Not certain what this entails, but they told me to plan on 2 hours.  I asked if I could drive myself, they said no problem, so that’s the plan.

Also received confirmation of my surgery on Wednesday, January 4^th at 5:45 a.m.  Was told they would prep me and put me in a room until 7:30, when the anesthesiologist would put me under.  Surgery is scheduled for 8:30.  They say the surgery will last 4 hours, then off to the ICU for 2-3 hours.  If all is well I should be in a room by 3:30 p.m.!  They also said if all goes well, I will be in the hospital 2-3 days.

My Neurosurgeon wanted clearance from my cardiologist prior to the surgery and today he approved the surgery.  I just saw him on Tuesday December 6^th, so I was pleased to not have to go back on the treadmill!

As regards the symptoms, the headaches are fewer and father between, and not so severe now.  Must be the Diamox working!  However, last night I experienced severe nausea.  I'm talking battery acid in the stomach nausea.  I couldn't get relief; tried Zantac and Tums, nothing touched this monster.  Laying down was not working as it just made it worse.  Sitting up made it tolerable, so I slept setting up as much as I could.  I called the Neurosurgeon’s office and described the symptoms and they agreed that it was probably the Diamox and called me in a prescription for Zofran.  I’ll find out tonight how this works!

Back to Work

Monday, December 12^th

Since my visit to the ER last Wednesday, I had not returned to work.  Besides the constant headaches, I was a mental wreck and didn’t want to be around other people, because I didn’t want to talk about my diagnosis.

Since starting the new meds, my headaches are less severe, and I am sleeping better.  Today I had a low-grade headache that started in the back of my head and radiated to the top of my forehead.  Also had light pain in my neck and some reoccurring nausea, but didn’t take any Norco today!

Today, I returned to work.  I was somewhat apprehensive about how my diagnosis and treatment would be received by my employer.  After all, I will probably be somewhat worthless for the next 6-8 weeks.  What I found is a gracious employer that is allowing me to work as I can pre and post operative, until I can return full time.  I am truly a blessed man!

Neurologist’s office called to set a time for my surgery on January 4^th, but I was not home, will call them tomorrow and get a time established.

Neurological Surgery Consultation

Friday, December 9^th

My wife Nila and son Ryan accompanied me to meet Ronald Young, Neurological Surgeon.  Dr Young went over the location of the tumor, and treatment he recommended. 

Dr Young recommended complete resection, with the caveat that complete resection is not often possible.  Research prior to my appointment confirmed that complete resection is rarely possible and follow-ups generally consisted of some form of radiation therapy.  Dr Young suggested these are very slow growing tumors, and given my age there would likely not be a follow up other than scans to monitor new growth.

My trepidation was length of recovery and long-term effects; most of these fears coming from my on line research.  I read stories of long-term post surgical ICU care, long term loss of feelings, use of one side of the body, loss of speech and long term memory loss.  Dr Young said the single cause of problems associated with the procedure was bleeding.  He assured me that any loss of function was minimal, and short term at best.  Dr Young reassured me that I would need 2-3 days post surgery stay in the hospital, and possibly 2-3 weeks before returning to normal daily functions.

Dr Young was concerned about my heart medications, as these are designed to thin the blood, which is not desirable for any surgical procedure.  Dr Young scheduled my surgery for January 4^th, and requested I stop taking my heart medications immediately.  Dr Young said I would be required to have a pre surgical exam by my cardiologist.  I wouldn’t think this would be a problem, as I saw my cardiologist on Tuesday the 6^th for my yearly check up.

Dr Young prescribed Diamox prior to the surgery to assist in eliminating any pressure prior to the surgery.

Diamox: Acetazolamide is used to treat glaucoma, a condition in which increased pressure in the eye can lead to gradual loss of vision. Acetazolamide decreases the pressure in the eye. Acetazolamide is also used to reduce the severity and duration of symptoms (upset stomach, headache, shortness of breath, dizziness, drowsiness, and fatigue) of altitude (mountain) sickness. Acetazolamide is used with other medicines to reduce edema (excess water retention) and to help control seizures in certain types of epilepsy.

Again, my concern was my ability to sleep and manage the pain associated with the headaches.  I told Dr Young I was currently taking Vicodin as needed for pain.  Dr Young was concerned about the aspirin content of Vicodin and prescribed Norco for pain management.

Norco:  Norco contains a combination of acetaminophen and hydrocodone. Hydrocodone is in a group of drugs called narcotic pain relievers. Acetaminophen is a less potent pain reliever that increases the effects of hydrocodone.  Norco is used to relieve moderate to severe pain.

So, my surgical consultation is complete and I am somewhat relieved about my fear of the side effects of the surgery, but somewhat disappointed I couldn’t get the surgery done sooner.

What is Central Neurocytoma

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Page ContentDefinition: A central neurocytoma is a rare, low-grade tumor. The World Health Organization classifies this tumor as a grade II. Central neurocytomas grow into the ventricles, spaces in the brain where cerebrospinal fluid is secreted and flows.  The tumor often blocks the flow of cerebrospinal fluid, causing hydrocephalus, a build-up of fluid in the brain.  

Symptoms: The most common symptoms of a central neurocytoma are due to increased intracranial pressure from hydrocephalus. Symptoms of increased intracranial pressure are headaches, nausea, vomiting, visual changes, and changes in behavior.

Evaluation: Central neurocytomas are evaluated with MRI and CT scans.   

Treatment Options:

• Surgery: Surgical removal of as much of the tumor as possible is the preferred treatment of central neurocytomas. 
• Radiation: Fractionated radiation is recommended for recurrent tumors.
• Chemotherapy:  Chemotherapy is recommended for recurrent tumors.

Follow-up: Long-term follow-up with regular brain scans is recommended to watch for tumor recurrence.

Diagnosis

Wednesday, December 7^th I was diagnosed with a tumor in the left lateral ventricle.

The week before Thanksgiving, I started waking up with headaches.  The headaches were not severe, just annoying and went away with a couple aspirins and a couple hours time.  This went on until the first weekend of December, when the headaches took a turn for the worse.  The headaches would simply not go away; no matter how many aspirins I took.  The alarming thing was they got worse when I was lying down.  Finally the night of Tuesday the 6th I didn't sleep at all!  The pain was excruciating, no matter if I stood, set or lay down, nothing helped.  Finally at 5:30 a.m., I decided I needed some help, got dressed and drove myself to the St. Vincent ER.

When I arrived at the ER, I sat in the parking lot for 20 minutes thinking “what am I doing here, I’ve got a headache, I can wait to see my family doctor later”.  But after setting there with my head pounding, I decided this would be the fastest way to get relief.

I was taken to a room, where a nurse took my personal information and a brief of my symptoms.  By now the headache was the worse I had experienced, my entire forehead was throbbing from my eyebrows to my hairline.  Every loud noise felt like a hammer on my temple.  The nurse tried to get me to lie down, but it just made it worse.  I asked her to turn off the TV and lights and could I just set up while I waited.

The Doctor came in about 15 minutes later.  He asked some questions, did an eye exam and some physical exercises.  The Doctor then explained that as a doctor he must present the worst case and tests would conclude if his analysis was correct.  He then suggested that my symptoms were an indication of a brain tumor.  All kinds of thoughts went through my mind as the doctors words played like elevator music in the background.  He asked if I understood, I said yes.   The nurse sets me up with an IV so the CT technicians can inject contrast dye and I’m off to the CT.

With the CT complete, they take me back to my room where I wait for the results.  I asked the nurse if there was anything they can do for the pain, she says not until they have a confirmation of a cause. 

About 20 minutes later, the Doctors returns and says the CT confirmed the presence of a mass and shows me the report.

Findings: Partially intraventricular mass involves the central and left anterior body of the corpus callosum.  It measures approximately 20 x 25mm in representative axial plane.  The mass projects into the left lateral ventricle and abuts the foramen on Monroe, perhaps accounting for exacerbated symptoms in supine position.  The right lateral ventricle appears pushed to the right.  The mass demonstrates precontrast hyperdensity.  There is minimal augmentation of density with contrast.  There is no adjacent vasogenic edema.

IMPRESSION: Mass appears to involve the corpus callosum and left lateral ventricle.  It is somewhat hyperdense.  Consider lymphoma, subependymoma, oligodendroglioma.

My first question is whether the tumor is cancerous.  The Doctor says they can’t be certain, but requests authorization to do an MRI.  The Doctor says the MRI would show more detail and they would know more with the results.  At this point, my emotions are running wild; I get nauseous and need to lie down.  The Nurse comes in and says the Doctor ordered a sedative before the MRI.

With the MRI complete, they return me to my room to await the results.  About 20 minutes later, the Doctor comes in with the results.

Findings: Restricted diffusion is present within the tumor in the left lateral ventricle.  Minimal calcification or hemorrhage is seen within the tumor on images sensitive to susceptibility artifact.  No abnormal areas of signal are present in the brain.  A triangular intraventricular mass is present within the left lateral ventricle.  It measures approximately 2.6 x 1.9 x 1.0 cm.  There is localized dilation of the left lateral ventricle, but the overall size of ventricles is normal.  No abnormal extracerebral fluid collections are present.  The intraventricular mass exhibits minimal enhancement.  Both vertebral arteries and both carotid arteries demonstrate signal voids indicative of rapid flowing blood.  The craniocervical junction is unremarkable.  Tumor in the left lateral ventricle.  The appearance is typical of a central neurocytoma.  A subependymoma would be another consideration.

The Doctor recommends a consultation with a Neurosurgeon and sets up an appointment for Friday the 9^th at 3:45 p.m.  I suggest that the issue of headaches and lack of sleep are my immediate concern and is there anything he can prescribe that would alleviate the symptoms.  He prescribes 5mg Vicodin, 1 or 2 as needed for pain every 6-8 hours.  I am currently taking 2 at bedtime, which provides 3 solid hours of sleep, then back to headaches and light sleep.  It’s still better than no sleep!