Sloan-Kettering
Functional MRI appointment by request of Dr. Gutin.
Bypass surgery with Grandma Jean a success. Surgery was on time. There were no complications during surgery. Although she is very tired and cannot talk due to sedatives wearing off and still being intubated (breathing tube, standard apparatus for anesthesia and surgery), her responses to finger squeeze and toe wiggle tests are very good.
Concurrently, Chris underwent a functional MRI test at Sloan-Kettering. Similar to an MRI, but includes wiggling fingers, seeing images, and other forms of stimulation to activate and map the brain tissue.
NYU
After the Sloan-Kettering appointment, Chris visited NYU to again try to establish appointments for both a functional MRI and MEG test. These test are now scheduled for Wednesday, April 5 at NYU.
Sloan-Kettering
Neuro-Oncologist appointment.
Today we didn't learn anything today. Just another consultation with a Neurologist. He seemed patient and willing to answer all questions.
Tomorrow will be a double dose of testing at NYU: a functional MRI (11:30am) and MEG (1pm).
Also, Chris will try to book an appointment with Dr. Kelly (NYU) which will be a pre-surgery consultation similar to the appointment set up on Friday with Dr. Gutin (Sloan).
Sloan-Kettering
Today will most likely be the tumor board review of Chris's case at Sloan-Kettering.
At this point, both neurosurgeons at Sloan-Kettering and NYU appear to be among the best in the country, if not world. Sloan-Kettering however, seems to have the superior infrastructure as NYU seems to be having trouble with even making test appointments.
NYU
Learned today the further details of the MEG. This technology seems to be an order of magnitude greater than previous methods. The resolution, detail, and precision all seem excellent. The mapping of the brain can be to the one or two millimeters. The methods and tools used are familar to brother, Michael (electrical engineer), and seem to be using the latest technology and software to analyze the large amounts of data taken from the MEG machine.
The next paragraph will explain the MEG in further detail. During the MEG test, a stimulus is applied to various extremities. In Chris's case, this mostly meant the fingers. The brain is monitored for specific activity. On the average person, about 92-95 milliseconds after the stimulus is applied, an electrical impulse is seen somewhere in the brain. The MEG is capable of locating where this impulse shows up. This is then considered the location of the brain that is used for the extremity. The brain is organized in the following way. Each of the fingers draw sort of a line from ear to top of head when monitoring each of the fingers' sensory location in the brain. The toes fit in the same line drawn by the fingers, but at the top of the head. Next, the motor control locations can be derived from their associated sensory locations. The brain's sensory and motor locations for each of the extremities are at a particular distance from each other. (Need to ask how the rest of the body other than extremities fits in)
Results from the MEG will be compiled in a couple of hours such that Dr. Kelly will have the results tomorrow. The assistants in Dr. Kelly's office explained the results would be offered by phone. We hope tomorrow this will happen tomorrow, but may try for a Friday appointment with Dr. Kelly while in the city for the pre-surgical appointment with Dr. Gutin.
Dr. Kelly is out of office after Friday. Dr. Kelly has office hours only on Wednesdays. (Need to ask when Dr. Kelly will return).
The supposed functional MRI was only a regular MRI. The functional MRI occurs just prior to surgery.
In summary, the MEG appears to have the cutting edge technology for assisting in surgery at NYU. But the tumor board at Sloan-Kettering is a highlight there. Both hospitals have fully competant Neurosurgeons. Dr. Kelly at NYU however, seems to have the upper hand with the equipment used. Additionally, Dr. Kelly uses a tool which superimposes computer images of the brain from the mapped database.
Summary of Agenda
Depending on how soon Dr. Kelly can commit to surgery, a decision can be made sometime after this Friday.
For an interesting article on Dr. Kelly's practices with the MEG, see 'Navigating the Brain', Health Care Solutions, January 1998, NYU Medical Center.
Sloan-Kettering
Unfortunatley, I am now back in California, so I cannot go with Chris to all the appointments. -Michael
Today at 11:30amEDT was the meeting with Dr. Gutin to discuss the final details before surgery at Sloan-Kettering. In addition, Dr. Gutin was prepared to give today, a full pre-surgery preparation of tests and consults for surgery scheduled on this Thursday, but since Chris is still weighing two options, Sloan or NYU, the pre-surgery tests are postponed.
In general, good news about the location of the mass. The functional MRI test performed this past Monday at Sloan show that the tumor IS NOT integrated with sensory and motor tissue. The tumor is rather located in a mostly inactive area of the brain which is located to the rear of the motor and sensory areas. In fact, Dr. Gutin explained that he used this part of the brain as an entry point to reach deeper areas of the brain for those patients requiring it. Dr. Gutin believes he can remove 75%-95% of the mass.
NYU
The frusterating part is getting appointments with Dr. Kelly so Chris also visited NYU today and was able to catch Dr. Kelly for five minutes prior to a meeting in his busy schedule. Dr. Kelly reviewed the MEG results and explained them to Chris. Dr. Kelly asked if Chris was ready for step #2. This second step involves the surgical placement of a grid of 150 sensors in the brain, then seal the skull and remain hosptitalized for 2 to 4 days for monitoring of brain activity. This method, explained Dr. Kelly, will determine how risky the surgery will be.
The Dilemma
Although Dr. Gutin and the team at Sloan-Kettering seem completely competent and ready to go with the functional MRI results, the MEG test at NYU seemed impressive because of the precision of accuracy that the brain can be mapped. This mapping seemed to be the answer to accuracy of tissue removal.
Since the methods preferred bewtween both Neurosurgeons seem so different, Chris consulted Dr. Gutin on the MEG technology. Dr. Gutin described the MEG as obsolete and the functional MRI was the modern method. He said that he used the MEG about seven years ago when he practiced in California.
Chris also consulted Dr. Gutin in a followup phone call about the sensor grid. The nurse who was recording the question on the other side of the phone never heard of such a thing, asked Chris to repeat the information, and then forwarded the information to Dr. Gutin. Chris is still waiting for Dr. Gutin's reply on this information.
Chris talked another Neurosurgeon who acted as another good third party consultation to review what Chris has been doing. Chris is now leaning toward Dr. Kelly at NYU. Although his methods are invasive, Dr. Kelly's combinational use of various methods seem more superior. This doesn't mean Dr. Gutin at Sloan-Kettering is a poor source of care. Sloan-Kettering has always been highly regarded by all who have contributed to Chris's decision. This is a very close 'race' between the two doctors.
Chris has many questions for Dr. Kelly to answer to help give Chris peace of mind on his decision. These questions will be asked tomorrow at NYU.
I need to follow up on some of the confusing writing of these daily updates.
1) Both Dr Kelly (NYU) and Dr. Gutin (Sloan) concur with where they see the mass in relation to motor and sensory areas of the brain. The mass is not integrated into the motor and sensory part of the brain.
2) Both NYU and Sloan concur with the ability to operate.
3) NYU and Sloan differ, however, in their methods of treatment for surgery. In particular, Dr. Kelly wants to use the invasive grid of probes to be inserted for 2-4 days.
4) It seems that the so-called 'MEG' as a brain mapping test is a good, modern method, especially when used in conjuction with other mapping methods.
5) We think the invasive brain monitoring technique used by Dr. Kelly will use the same entry point as the surgery to remove the tumor.
6) The type of tumor is still unknown. Some say it is a hybrid type of cells. When the tumor is removed, full characterization can be made, and the appropriate post-surgery treatment determined.
Finish pre-surgical appointments. Chris will spend the night at Dave and Lori's. Dave and his wife, Lori are friends of brother Michael and also Chris.
There were positive comments made to Chris today regarding how well he should do with the surgeries because of his superior health.
When I talked to Chris tonight, he sounded positive and upbeat, and not even too tired. In addition to all the best wishes and prayers from everyone, I'm sure the company he's with tonight has something to do with that. Thanks Dave, Lori, Clare!
Chris will be admitted to NYU at 5:30am to surgically install the grid and perform more brain mapping and monitioring. After the monitoring and analysis by the team at NYU, Dr. Kelly will decide how much tumor to remove.
The grid of 150 probes will remain for 2 days#, then a determined amount of the tumor will be removed. Then, about 4 days after the removal surgery and in the ICU, Chris will leave the hospital. After returning home, the recovery period is about 6 weeks to return to work.
A possible complication is an infection from the probes (~3% chance). Treatment for this type of infection will be administering antibiotics in the hosptial for a few weeks.
----------
#This changed from 2-4 days to 2 days. The 4 day range is for epilepsy patients where seizure recordings are required. Since Chris's monitoring is straightforward, the 2 day time is most likely.
| Surgery #1 of 2 - The Grid Installation |
(14:00 EDT)
Chris arrived at NYU on time at 5:30am, but was scheduled for various tests: Stereotactic headgear, angiogram, CAT scan, and fMRI. He is currently at the beginning of the grid procedure.
(20:00 EDT)
Stage 1 of 2 procedure has been sucessfully completed. Chris is in recovery. The wires are installed, but they will not be connected until tomorrow. Dr. Kelly met with Mom, Dad, and Clare for only a few minutes but said hopefully the operation will be late Thursday. Mom, Dad, and Clare visited the recovery room for about 5 minutes. Chris is experiencing typical surgery recovery and not very alert. The Stereotactic headgear gave the most problems of discomfort. As soon as a bed is available in the ICU, Chris will be moved there.
|
Wednesday, April 19, 2000
|
(15:00 EDT)
Chris is in the Neurosurgical ICU. Everything is going well so far. He is awake, alert, and eating with a big appetite. He is in some pain, but taking pain killers.
The epilepsy team is currently performing a group of tests, which should last for an hour.
The results of surgery should be pre-determined by the results of the grid testing.
Chris is scheduled for surgery tomorrow at 15:00 EDT for the tumor removal.
The level of care at NYU seems excellent (as reported by mom).
Mom was at the hospital all day. She is remaining in Manhattan until Friday. Dave also visited quickly today. ICU visiting remain restricted. Dad (and I think Clare) will visit again tonight.
| Surgery #2 of 2 - The Tumor Removal |
(16:15 EDT)
Chris began surgery on time (15:00 EDT).
(20:00 EDT)
Everything went perfect. Maybe got it all. More CAT-scan and fMRI will confirm this. No damage. No deficits. 5-star recovery. Chris is already alert and talking. In fact, the only, if you want to call it, bad thing, is that he is waiting for an ICU recovery room.
After learning Dr. Kelly's personality, he seems like he doesn't like to be overly optimistic to get peoples' hopes up. Therefore, the fact that even HE sounded like everything went perfect is a good sign. Thank you, Dr. Patrick Kelly.
The forcast to leave the hospital is in 4 days.
(1200 EDT)
This is a last minute update before I leave for the airport. I Just talked to Dad.
The MRI is complete and waiting for Dr. Kelly to evaluate.
The size of the tumor was golf ball sized.
Mom, Dad, and Clare visited Chris briefly before letting Chris get some sleep. Chris has a bad headache and his pain medication has been increased.
The 48 to 72 hour period will be the most uncomfortable for Chris before getting better.
Mom and Clare are going home for a couple of days. They will be back by Sunday.
I made it! I feared my flight would be cancelled, but after a 4 hour ground delay at LAX because of NY weather, we finally were cleared for takeoff.
Chris is still suffering from bad headaches, so he can't sleep. I believe they've tried about 3 different pain killers.
CORRECTION:The period of time that will be especially painful for Chris is between 48 and 72 hours, and not up to 72 hours as I previously indicated. That means that from Saturday afternoon until Sunday afternoon, Chris my be in bad pain from headaches. Chris may also have some involuntary movement or numbness of his right leg and arm. This is all expected and a normal part of recovery, but will not be a long term effect.
We did not find out the results of the MRI. Dr. Kelly was performing surgeries all day and was unavailable.
Aside from wanting the pain to reside, the two big items are:
(1) the pathology report, and (2) the MRI report.
We are hoping the Dr. Kelly is available today.
The interpretations of these reports will tell:
(1) how much of the tumor has been removed and if the tumor is benign or malignant, and (2) is further treatment necessary, such as chemotherapy or radiation.
(02:00 EDT)
As I left the hospital tonight at about 12:30, Chris still hadn't slept due to an uncomfortable headache pain. He is re-trying a different pain killer which did not seem to take a noticeable affect the first time. By now, Chris is also feeling the effects from being exhausted, having other medications, and having a high blood pressure. His blood pressure is being noted and checked per protocol. The nurse explained that the high blood pressure can be attributed to pain and other recovery factors. Chris is not however, in such extreme pain that he doesn't want to listen to anything. He is able to watch television and talk and ask questions.
Chris is concerned with a weakness in feeling in his right toes, which is a different symptom than prior to surgery. The current symptoms however, seem to be in line with Dr. Kelly's expectations and warnings.
Chris should be walking as part of his recovery but has felt too miserable to do it. The good news to this is that he is not likely to develop the complications that are caused by not walking because of his good condition. Hopefully, he'll feel up to it tomorrow.
Although the recovery is taking it's normal course, which is 'good', [Chris especially] is still anxious to find out the overall summary of results to know if further treatment is necessary. We may not know this answer until later in the week due to the lead time of the pathology report. Dr. Kelly spoke briefly with Chris this morning and said the MRI 'looked good'. Since Dr. Kelly didn't elaborate on this, we can only speculate that the MRI showed the mass was completely removed and needs to be complemented with pathology data.
(23:00)
Today was a good recovery day. Although Chris is still in pain, he can now feel a little relief, enough to walk like he needs to.
His blood pressure went down with the pain relief.
He is also being weaned off some of the medications.
The pain is mostly in the back of his neck, and usually occurs when he is upright and holding his head up. He usually gets up and does what he needs to do, including walking, then rests by lying down with a hot compress on the back of his neck. The hot compress helps relieve the pain.
Tonight looks like a good possibility that Chris will get some sleep.
A member of the epilepsy team, who monitored Chris's progress throughout these procedures, visited Chris to inquire about the feeling in his leg. Chris reported that his leg is mostly OK, better than yesterday when the pain was also bad. The pain and abnormal leg and toe feeling seem to be diminishing together.
The resident doctor who works with Dr. Kelly started a rumor that Chris may leave tomorrow. This didn't look too likely as of tonight because Dr. Kelly still hadn't seen Chris. A morning dismissal seems too soon for Chris's comfort to be sent that far away from NYU. If Chris feels much better tomorrow, Tuesday should be a better time to leave.
Three words: Chris is home.
I apologize for the delay in reporting. Today went fast and I didn't have access to the internet. Chris was discharged in the morning. Since I was already packed and ready to go, I grabbed an earlier flight back to LA.
Dr. Kelly saw Chris this morning and approved his discharge. Chris is still uncomfortable, especially when sitting or standing up for long periods of time. Most of the pain is in his neck. No pain in the neck or hole in the head jokes, please.
Basically, he still needs lots of rest.
Chris must call this Wednesday to schedule follow-up visits to Dr. Kelly's office.
The final evaluation of the surgery and what is next is still not determined.
