Monday, October 31, 2005

2nd meeting w/ Neurosurgeon #1 to discuss surgery

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We met with:

Dr. Neil Martin
Nurse: Jennifer

Here's the results of our conversations:
Looked at 1st and 2nd functional MRIs. There is one area near (but not right next to) the tumor that is close to the reading and auditory function areas of the brain.
Looks like a tumor that originated in the brain rather than come from somewhere else; however, the CT scan, did show something on the lung that should be investigated first, before coninuing with the brain tumor surgery plans.
There are basically three choices that we could make about how to deal with the brain tumor:
1. Assume it is a tumor, treat with radiation which could be non-invasive. This is not necessarily the best option, because you can't be certain about what kind of tumor it is, because there is no biopsy to determine.
2. You could biopsy it first; however, there are risks of bleeding involved with this procedure.
3. Go ahead and remove it with a crainiotomy to remove most or all of the tumor.

Dr. Martin's strong recommendation is to go ahead and remove it (#3 - left parietal craniotomoy with biopsy and resection of tumor) with a biopsy first during surgery to check the tumor's nature, then remove it.
Actual surgery would be through a microscope, after the biopsy, the surgeons would use the results to determine more surgical solutions on the spot.
There would be an MRI in the operating room so it could be checked that all was removed before incision closed.
During surgery, Dr. Martin would be present as well as an anestegiologist, chief resident, MRI techs and nurses.

Should get surgery within a month


Questions:

How risky is spot? Not in the most delicate area, and there hasn't been much change in size.
There is a 5-10% risk of some neurological trouble that could effect reading, writing, memory, speech, paralysis of weakness on right side of body.


Would the surgery be performed by a student, or specifically you? The preparation work for surgery (stabilization, incisions, closures, etc.) would
be performed by supervised medical interns, but the actual delicate surgery would be performed by Dr. Martin.

Is the tumor getting bigger or smaller? Doesn't seem to be much change in size in the past month.


Can tumors be caused by parasites (i.e. sushi)? There is no proof of this.


Had Epstein bar at one time, could it be related? Nothing to prove that this is related.

I read that Dialintin interrupts vitamin d metabolism, and could soften bones, should we be concerned? This is an unusual side effect, but should be sure to take vitamin supplements.

Explain elevated ALT/AST? This is common because of the use of the anti-seizure drug. The current levels are expected, but we should be sure
to keep an eye on these levels and get blood test in a month to check again.


What kind of treatment after tumor removed?
Continue with dialantin? You shouldn't abruptly stop, he would stay on dilantin for several months
If biopsy confirms tumor, radiation would be required, possibly chemo with medicaction
Hospital stay - 5 days
Recovery - 8 weeks

What's next:
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11/1 @ 11am Meeting with Dr. Kim (Neurosurgeon #2) to review 2nd MRI and functional MRI
11/8 @ 3pm Dr. Shelka - Pulminologist to discuss findings in lung from CT scan
- UCLA will be sending our first chest xray films back to us through the mail
- after pulminologist says "all clear" possibly schedule surgery for late Nov. or mid Dec.
- Mark will donate blood for himself 2 times before surgery
- blood test to check dilantin and ASL/AST levels

Thursday, October 27, 2005

questions about the different CT scan interpretations

Several people have asked why the Cedar Sinai doc said the CT scan was
clear and the Hoag doc said that there was something on the lower left
lung...

Yep, they both saw the same scan. We feel that the Hoag doctor took
more time to actually look at it though.
The Cedar Sinai doctor just had the disk with the images on it and
didn't say anything about any of the findings.
The Hoag doctor looked at the same disk and reported the concern about
the thing found in the lung.
We also had the radiologist fax us his initial written report which also
indicated something in the lung which coincided with the Hoag doctor's
findings.


Tuesday, October 25, 2005

2nd meeting w/ Neurosurgeon #2 to review CT scan

We met with:
------------------
Dr. Kim
Neurosurgeon @ Hoag Hospital, Newport Beach, CA
10/13/05
10/24/05

Here's the results of our conversations:
10/24/05

Reviewing the results of the CT scan, we found that there is something in the left lower lobe of the lung, 2.7x2.1cm but not sure what it is. Don't think it is lung cancer, it could be infection, or a cyst, not really sure so would like Mark to see a pulminologist for more information about what was found in the lung. The CT scan also showed a cyst on the spleen but this is very common and no big deal. The CT scan also showed some degeneration in the left hip joint, but no cause for alarm, probably related to his active life style. We also reviewed a recent blood test and noticed that the following levels were higher than a previous test: glucose serum levels, AST & ALT. Higher levels are expected due to the anti-seizure medication; however we need to keep an eye on the AST & ALT levels. These are related to the liver and if they keep going up, we will need to change the medication. The dilantin levels were low, so the GP's call to up the medication 100mg was right. We should next get a new MRI and a functional MRI as well so we can see if the tumor is getting smaller or not before deciding the next step.

Questions:

Can tumors be caused by stress? no
Had Epstein bar at one time, could it be related? No correlation that we know of.
Could it be a parasite? Usually from undercooked pork, not from sushi.

What's next?:
10/24/05 2nd MRI
10/24/05 2nd Function MRI
10/28/05 @ 2pm, 2nd meeting with Dr. Martin (neurosurgeon #1) for plan of action meeting
11/1/05 3rd meeting with Dr. Kim(neurosurgeon #2) to review MRI results
get another liver function test in a few weeks

Thursday, October 20, 2005

Following up environmental causes

Just starting to follow up on the thought that there may be some sort of
environmental cause.

I did remember some sort of report of toxins in the soil, not in our
immediate neighborhood, but another neighborhood that borders the wetlands.
I round up an article on the situation:
http://www.calcoast.org/news/wetlands041602.htm

I've got a message in to the county to find out when/where/results of
soil tests in our area and request a possible test in our immediate area.

A friend had suggested some other leads that I'm following up on:
National Institute of Health
California Dept. of Public Health
Contacting our Congressman Dana Rohrabacher


Neurosurgeon #3

------------
We met with:

Dr. Keith Black
Nurse: Precious
Neurosurgeon @ Cedar Sinai Hospital, Los Angeles, CA
10/19/05


Here's the results of our conversations:
Can't give a definitive diagnosis based on MRI only. Possibilities could be a tumor that originates in brain or elsewhere, could be infectious process or inflamitory process. Could even be a parasite from eating sushi! (we love sushi, I hope this isn't it!) Options are to wait a bit and do a repeat MRI scan, if getting smaller might not be tumor, if it is getting bigger probably is a tumor. Another option is to do something now like a biopsy. A biopsy is possible with a needle, but it looks like there is a vessel over the tumor and it might not be a good idea to use a needle because it could cause bleeding. Better to make a bigger opening and get a better look to get a piece, less risk. They have microscopes with cameras and computer driven to help do this kind of biopsy. The CT scan looked clear which indicates there is not a primary tumor in the core. This MRI scan is tough to determine specifically what it is and we will need to know more before determining treatment. Probability of metastatic tumor is low, because of Mark's age group and low common factors for cause. Probably should repeat MRI scan to check size and then get a piece of it. Light excersize is OK as long as it isn't heavy lifting since it could cause irritation on that vessel near the tumor.

Questions:
-----------------
Can tumors be caused by stress? no

Can it possibly go away? If it is infection or inflammatory it could possibly go away unless it is infection from bacteria.

Why is it swelling? Irritation

Would the swelled tissue need removed too? no

What are the signs of a metastatic lesion vs. primary tumor?
- is it true that 3/4 of brain tumors are metastatic? Yes, but doesn't mean anything in this case.

What is involved in a biopsy? Patient is awake, make a small incision in scalp, pinhole in skull so they can
see with microscope and computer to avoid any vessels and get a piece of it.

Do certain neurosurgeons specialize in certain types of tumors? Yes, some specialize in pituitary, some in other specific kinds but many are multi-tumor specialists and can deal with several kinds of tumors.

What are the risks based on its location? Probably sitting in area that controls sensation of right side of the body. Close to language, motor areas. Low risk of stroke, infection, bleeding.

What's next:
------------------
second meeting with Dr. Kim (neurosurgeon #2) 10/24/05
second meeting with Dr. Martin (neurosurgeon #3) 10/28/05
second MRI scan in a week or so

CT scan and blood level results back

Mark had his blood checked for dilantin levels and they came back low, so his dosage was increased to 400mg. FYI...Dilantin is an anti-seizure medication.

The CT scan came back clear, meaning that they did not detect any tumors in Mark's core (chest, abdomen, pelvis). Yea!

Tuesday, October 18, 2005

weird things at church

We went to church on Sunday. They announced about Mark's condition so that people would pray for healing. It was pretty emotional to see all of the concern. A couple of weird things happened though...

Our pastor mentioned that he was talking to some people and he thought he heard that there might be a cluster of brain tumor incidents in our area. This is all hearsay, so I guess I'm going to have to pull an Erin Brokovich and start looking into this. Obviously the thought of this is very scary and I hope it doesn't turn out to be some sort of localized environment cause.

The other weird thing was that there was this kooky woman at church that came up and grabbed me and boldly let me know that doctors were corrupt and that they abuse the power of healing. She said that Mark looked fine to her and that the doctors were making it up so they can get my money. She said she worked in the industry and knew for a fact that doctors would remove body parts, just because they could and not because they had to. She also implied that I didn't know that the films that I saw of Mark's tumor were really his. What a nut! Didn't really need some crackpot hassling me right now!

Monday, October 17, 2005

Neursurgeon #2

We met with:
------------------
Dr. Kim
Neurosurgeon @ Hoag Hospital, Newport Beach, CA
10/13/05

Here's the results of our conversations:
----------------------------------------------------
Episodes were seizures. Probably localized. Brain cells irritable because of lesion. MRI can't prove where it came from, looks like a tumor, but could be non-tumor (i.e. infection) May be two masses there. Possible meningioma, which is a tumor that develops from the surface of brain. It looks like there is one tumor at the surface and possibly one below. Probably not caused by concussion, but unclear what the cause could be at this point. This tumor probably won't go away on its own. Will probably need a biopsy to determine what kind of tumor(s) it is before determining treatment options. Ordered a CT scan to see if there are tumors in chest/abdomen/pelvis. May also get a PET scan. May be helpful to get a careful skin exam to rule out tumor coming from mellanoma. Should probably be treated within 3-4 weeks, don't wait more than 2 months. Avoid caffeine, alcohol, sleep deprivation so as to decrease possibilities of more seizures.

Questions:
-----------------
Would the swelled tissue need removed too? no

Should continue baby aspirin? no

What are the signs of a metastatic lesion vs. primary tumor?
- we looked at the lung xray it was clear
- should we be looking elsewhere for tumors? Yes get a ct scan
- is it true that 3/4 of brain tumors are metastatic? Majority are.

Do certain neurosurgeons specialize in certain types of tumors? No. There aren't enough types of brain tumors to specialize.

What is involved in a biopsy?
- limited biopsy with needle, downside is that we may not get a good piece of lesion
- could do a small open procedure to get a piece out It is in dominate sensory area, so there is a risk that you may have difficulty knowing where your hand is in space. 5% risk of that happening

What treatments are available?
Really need to know what kind of tumor first before determining treatment.
Different forms of radiation
Gamma knife, need to know if it is infection, or primary vs metastatic


What's next:
------------------
Mark got a blood test on 10/14/05 to check dilantin levels. (waiting for results)
Mark got a CT scan on 10/14/05. (waiting for results)
We have a 3rd opinion scheduled 10/19/05 with Dr. Keith Black @ Cedar Sinai Hospital

Got questions?
-------------------
If you have any questions or other things you want me to ask, please email me.

Thursday, October 13, 2005

Chest XRay clear

When we first got the chest xray, Mark and I checked it out, but were concerned about a bright white circle we saw on one side of the lungs. We initially thought the worst, but after about 5 days we finally were able to get an official statement from a radiologist that what we saw was an artery and everything was clear.

Monday, October 10, 2005

Functional MRI done

Mark had his functional MRI today, but we really don't have any more news than that.
I sat in on the scans and could definately see the small tumor and the surrounding swelling.
They're going to do the analysis today and should have the results to the doctor by tomorrow.
We'll also have the full lung xray report tomorrow.

We're making an appointment to meet with another neurosurgeon for a second opinion, but don't have a date set yet.

Lots of people have sent me websites and information and other stuff to look into, so I've been digging into all of that.
I'm collecting information about different types of treatments so that I can bring it up for discussions when we meet with all of the upcoming neurosurgeons. For example, (Gabe knows about this one) I know that UCLA and Hoag both have "gamma knife" procedures available.

Let me know if anyone has any questions that want answered

Wednesday, October 05, 2005

bad timing :(

very unfortunate timing...our dog Kaino had to be put to sleep last night because he had a massive seizure...the vet was relating it to some sort of brain-related cancer...she did indicate that this is common in older dogs...Kaino was 13.5 years old.

this kind of struck me funny, because last year we had another dog (Tahquitz) die of a brain-related condition as well. She was 11 years old.

now I'm wondering if I should be looking at some sort of environmental cause as well?

don't really want to think about it right now, but will visit this thought again later

Tuesday, October 04, 2005

Neursurgeon #1

We first met with Dr. Neil Martin, a big wig, at UCLA Medical center. He came as a recommendations from one of our friends that used him to remove her tumor when she was 8 months pregnant with twins! (no one else would touch her, but Dr. Martin saved the day!)
He reviewed the MRI and indicated that Mark had a brain tumor and that it needed to come out. Before making decisions on how to remove it, he ordered a functional MRI . This kind of MRI can take pictures of the brain while you are thinking of things so they can measure the blood flow in certain areas and can tell specifically where your speech center is, your spatial center, etc. I also asked about the possibility of it being a tumor that spread from somewhere else. He said he didn't think it was a metastatic tumor, but did order a chest xray to see if there were any possible tumors there. The bad news was that Dr. Martin was going out of town and we wouldn't be able to hear his plan of surgery until the end of October!

Monday, October 03, 2005

Symptoms first started

Towards the end of August, Mark had an incident where he was talking to a customer and had a weird euphoric feeling and a bit anxious and wasn't able to complete his sentences. At the time, we were relating it to a physical therapy session that he had with a chiropractic kiniseologist and didn't think much of it. But then after a weekend trip with Brock to the mountains, Mark came back on Sunday (9/18) and had decided to go to yoga. The yoga that we do is "hot" yoga, meaning it is over 100 degrees in the room when you are stretching. Mark again had that "weird" feeling, but thought it might be due to the extreme heat in the room. As he was driving home, he felt that his motor skills were a bit out of control and he tried to pull over on PCH. He felt that he was backing up traffic while this was happening. He tried to call me, but couldn't complete his sentences, so I wasn't sure what was going on. After a bit of rest, he felt better and was able to drive home. Once home, he was still unable to complete his sentences and was quite frustrated. He then just went to sleep for the night. The next day when I called, he was able to complete sentences, but had difficulty with numbers. He had trouble recalling his phone number and couldn't write or type any numbers. This alarmed us enough to make a doctor visit. He visited his GP, but was diagnosed with anxiety or depression and was given some sort of drug. I didn't really buy this diagnosis, so I convinced him to go see a neurologist. The neurologist ordered an EEG and an MRI and from there we saw that he did have what looked like a small tumor in the rear left area of his brain. He then recommended that we consult a neurosurgeon. Which we did.