My grandfather has a brain tumor- can anyone help me?

I am asking for anyones experience and/or advice on how to treat tumors. Any information about this is greatly appreciated. I do not really believe in hospital-type treatments (like radiation etc...) unless maybe it is the only option. So, I was wondering if anyone had information or experience with different treatments for brain tumors. I have included a letter below that my step-grandmother wrote to our family explaining my grandfather's condition. My mother in Ginny (which will become clear from the email) so my grandfather will be staying with us when he goes in for sugary. Ijust want to be as helpful to them as possible at this time. I don't know whether it would best for me to just stay quiet and let them and the doctors do their thing. Or, if I should offer an alternative method for dealing with brain tumors. As I stated above, any advice/comments are greatly appreciated. Also, the email is pretty long, so I really just appreciate anyone who takes the time to read it.

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Dear Family and Friends,

This is the most difficult letter I have ever written, so please bear with me. I am writing to our family members and friends who, I believe, have not heard about Ken’s condition. Most of our close family members and many local friends have been informed, and I am sending them a separate email with the latest news that is included at the bottom of this email. I assume that you will have many questions, so I will try to answer as many as I can here.

I am going to start with the worst news. Ken has a brain tumor. However, the tumor is operable, and we are proceeding with treatment. More about the type of tumor, treatment, and possible outcome is included below. But first, some background.

On Easter Sunday, Ken started to feel ill. His symptoms were mild nausea, loss of equilibrium, and a general weak feeling. Over the next several days, his symptoms increased slightly. His nausea became mild to moderate, loss of equilibrium worsened slightly, and weakness increased to feeling very washed out. On Friday, April 13, we went to our family doctor, who ordered an EKG, X-ray, and blood work. Thinking Ken may have some kind of infection, the doctor also prescribed a general antibiotic. Last Wednesday, April 18, Ken awoke feeling much worse, and he started throwing up. So around 9:00, we headed off to the ER at our local hospital.

The ER doctor was most concerned about Ken’s loss of equilibrium, so he ordered a MRI of Ken’s head. At 4:00 p.m., our world turned upside down. We were informed that Ken had a left cerebellar pontine angle (CPA) mass behind his left ear, which was probably an acoustic neuroma (more about AN’s below). Beebe Hospital in Lewes is ill-equipped to handle such cases, so they were referring us to Christiana Hospital in upstate Delaware. We don’t know anyone up there, so we asked to be referred to Johns Hopkins in Baltimore. We did this for two reasons. First, Hopkins is the best hospital in this region. Secondly, Ginny, Ken’s daughter, lives in Baltimore. The ER doctor agreed and went off to send the test results to Hopkins. Half an hour later, we were hit with the second shock of the day. The Hopkins doctor recommended transporting Ken to Hopkins that night. So that is what we did.

I came home to call immediate family and make arrangements to stay in Baltimore for several days. Ken, of course, stayed at the ER and waited for the ambulance. Although Ken’s symptoms got worse during the day, he was awake and alert at all times. Ken was finally picked up at 9:00 p.m., had a miserable ride to hospital, and arrived at Hopkins around 1:00 a.m, where they immediately started on tests.

I left home around 9:00 a.m. Thursday morning and arrived at Hopkins around 1:00 p.m. By that time, Ken had been stabilized, his nausea was under control, he had eaten lunch (which he was able to keep down), and was feeling much better though very weak. Somewhere between 2 and 3 o’clock, they informed us Ken was going to be discharged after a couple more tests. He was discharged at 6 p.m. Thursday. The hospital also told us that we would be contacted in 1 or 2 days and told how they planned to proceed. At this point, we were fairly sure Ken was headed for surgery. Ken was given several medications to help control his symptoms.

We went to Ginny’s, spent the night, and headed home late Friday morning, arriving home about 3 p.m. The hospital had already called. Yes, Ken needs surgery; the surgery was tentatively scheduled for May 4; they wanted us back in Baltimore on Tuesday to meet with the surgical team. We spent a quiet weekend at home. Ken’s symptoms have improved but are not completely gone. He has good days and bad days.

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Ken has worn hearing aids in both ears for about 5 years. However, the hearing in his left ear is much worse, almost non-existent. For at least the last 6 months, he has relied solely on the hearing in his right ear.

Yesterday, we were back in Baltimore to meet with the surgeon, Doctor Quinones (aka Dr. Q).
We like Dr. Q and believe we are in the right place.

Here is what we learned:

Dr. Q is 99% sure that Ken has an acoustic neuroma (AN’s). Of course, we won’t be 100% sure until we get the pathology report after the surgery. This is what I have learned about AN’s. I hope it is correct. If I get any of this wrong, please let me know. AN’s are slow growing tumors that grow from the Schwann cells (the sheathing that surrounds nerves) of the auditory nerves behind each ear. Ken’s tumor is on the left side. AN’s are almost always benign and do not spread to other organs.

Dr. Q believes the tumor has been there for a long time, possibly for years. It measures approx.
3 x 3 cm. (a little smaller that an golf ball). The tumor is why Ken’s hearing is far worse on the left side. The tumor is large enough that it is pressing against other nerves. It is why Ken is experiencing nausea and loss of equilibrium. Ken’s sense of taste is affected. We don’t know if the decline in his sense of taste is due to the tumor or because of his symptoms and all the medication he is taking. Dr. Q is concerned.

The main goal of treatment (meaning surgery) is to stop the progression of the tumor. There is really no choice. Not having surgery is unthinkable, so I won’t even go there. The goal during surgery is total removal of the tumor. If that is not possible, the next step is radiation.

Since Hopkins is a teaching hospital, we asked who would be doing the surgery. Dr. Q said that members of his team may perform part of the surgery, but that when it came to the actual removal of the tumor, he would do it. It is a delicate procedure because so many nerves are involved.

I mentioned above that surgery was tentatively scheduled for May 4th. Upon further review, Dr. Q has decided that he wants an ENT surgeon (Dr. Matt Stewart) to participate in Ken’s surgery. Part of the tumor is touching bone. The ENT’s job is to drill out the bone (sounds awful, doesn’t it) where the tumor touches bone. Therefore, the surgery will probably have to be rescheduled. It all depends upon when both surgeons are available. We should know in a couple of days. I will let you know.

Dr. Q considers Ken’s need of surgery to semi-urgent. It may take a few weeks to schedule everything. We cannot wait 2-3 months.

After surgery, Ken will be in the hospital for 5-7 days. He will probably need some rehab, which can probably be done here. Immediately after surgery, Ken’s current symptoms will get worse (maybe a lot worse). It will take 6-8 weeks to find our if he has any permanent residual effects.
Dr. Q does not expect Ken to be in much pain.

Other residual effects are:

Ken is going to lose the hearing in his left ear. The right ear will be unaffected.

There is a 20% chance that the facial nerve is permanently damaged, and the left side of his face may droop.

There is a chance that Ken’s current symptoms may not improve. 60% of patients show improvement. Some do not have any symptoms. It all depends on whether or not the nerves are permanently damaged. We won’t know for 6-8 weeks. Medication may help.

The chance of recurrence of the tumor is very small.

That’s all I know right now. I will keep everyone informed when I know more. You are welcome to forward this email to anyone you think should know. I do not believe is keeping such things a secret.

As for me, I am exhausted, worried, and scared. The last 7 days have been a nightmare roller coaster ride. But I am also encouraged and hopeful. We are in the right place at Hopkins. Ken’s children, Ginny and Bob and their families, are giving me love and support. My brother and sister-in-law, Tom and Mary Jane, are not far away.

Tags: Brain, tumor

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Permalink Reply by Emily on April 30, 2012 at 10:00am

Karrie, thank you so much for your story and prayers! Your story is absolutely the most amazing thing I have ever heard- I just can't get over it! I am seriously considering fasting for a day and praying for my grandfather, although unfortunately I know my family will not be too receptive of this idea if I suggest it to them. I, however, and a strong believer in the power of prayer and intention. I hope my prayers can have a positive impact for my grandfather.

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Permalink Reply by Yogaranka on April 30, 2012 at 11:51am

The power of intention is HUGE!

In our yoga group we regularly chanted for distant sufferers, to find their pain has lessened, their suffering eased and ceased. The most powerful one was one baby born premature, and the whole saddhana was dedicated and chanted for her getting over some kind of infection. 40 some of us practicing yoga and meditation was very healing for the baby, far away, and of course for us as well. The baby is now a grown adult.

Of course, as you say Karrie, it could have happened without our prayers, it does happen all the time, people getting better, but the sudden improvement was so amazing to hear about, that just about took our breath away.

May all be well, may all be happy.

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Permalink Reply by Kimberry on April 30, 2012 at 3:20pm

<3
In my prayers as well, Em.

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Permalink Reply by Ben on April 30, 2012 at 11:28am

Sorry to hear about this,

I had a similar situation with my uncle who was diagnosed with a brain tumor under similar circumstances as your grandfather, though he was only in his early 50's. As far as what you should do? Well first and foremost make sure you are there for your everyone in your family who needs you to be. But I am assuming you want to provide some sort of health advice to your grandfather and/or whoever will be caring for him. First just keep in mind that there are many different types of brain tumors and that there is no evidence that simply getting someone to go 811 will cure anything. Even though surgery to remove the tumor is extremely invasive, it is generally the first procedure attempted. With my uncle, they weren't able to remove all of the tumor. This is a common case with brain tumor surgeries and sometimes they remove all of it the tumor only to find that it regrows. Great approach right?

Anyway, you'll want to focus on maximizing your grandfather's health for the surgery. Since there will be inevitable brain damage, you want to focus on nutrition that helps release B.D.N.F a hormone that signals the brain to repair and rejuvenate. Food-wise, this is blueberries and the spice turmeric. Of course, you'll want your grandfather on lots of fruits and vegetables too, but those in particular will be very beneficial. Do you think you could get him on vegetable juice? Many times this is a good way to get a lot of nutrition into the sick until they learn to eat large salads. Supplement wise, there are some fantastic choices such as Acetyl-L-Carnitine, Pantethine and DHA. These all release the aforementioned BDNF. Acetyl-L-Carnitine in particular works unbelievably well at repairing brain and nervous system injuries. With all these get him to check with his doctors to make sure there is no interaction. But make sure the question posed is "Are the any known interactions with these supplements and the medication he is on?" Any other question about using supplementation with cancer treatments such as "What do you think of _____?" will likely be dismissed quickly. So keep asking "Why not?".

So if the surgery doesn't work and they go to radiation you'll want his antioxidant level to be as high as possible. This will keep the collateral damage low. Remember, many plant nutrients can actually cause cancer treatments to more effectively kill malignant cells while protecting the healthy cells at the same time which is really cool! Again, I need to mention turmeric and the compound curcumin which has the most anti-cancer properties. Not only does curcumin metabolize in cancer cells and cause them to commit suicide, but it also is protective against healthy cells. The M.D. Anderson cancer center actually concluded in a study that taking curcumin reduced brain inflammation from brain cancer radiation therapy. This is huge because the inflammation from radiation is what causes many of the long-term side effects of the treatment. Further, if chemo is brought into the picture, curcumin can also cause more of the chemo to enter into the cancer cells and less of it to effect the healthy brain cells.

Give him lots of little tips if he isn't used to healthy eating and try not to come off as preachy! This was basically my approach with my uncle. I don't think he ended up doing anything I suggested. He survived all the treatment with a low chance of recurrence but the endeavor has changed him. He is much slower to speak and think than he used to be and has begun to gain weight. Hopefully your grandfather will have better luck! Good luck to you too!

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Permalink Reply by Emily on April 30, 2012 at 1:09pm

Thank you so much all of you for your kindness, support, and advice! Ben, your tips and information for pre-op nutrition and supplements was extremely helpful, and I am in the process of researching for information. I'd like to create sort of a plan of helpful options/suggestions that my grandfather can choose to use before surgery if he is interested. He's very kind and receptive, which is a good thing. My step-grandmother is a little more controlling, but hopefully she will be open too. Thanks again everyone for your time in reading, posting, and praying- your support really does mean the world to me!

Also, I wanted to ask kind of a silly question. I am not as spiritual as I'd like to be. I am a very busy full-time student, and unfortunately have not devoted the time to spiritual practice/growth. Many of you all seem to be pretty experienced in this field however. Is there any suggestions you all have for prayer and increasing one's spiritual practice? I just don't really know how to go about praying for my grandfather, if this makes sense. I want to do it in the most effective way possible.

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Permalink Reply by Yogaranka on April 30, 2012 at 1:44pm

Emily,

Each of us come from a different background, taken different paths, but all of us want happiness unveiled.

To get to that inner gem, you must do a careful dusting, removing the stories that cloud our vision.

Sit or lie down, relax your body, and come to a place of NOW in your head. Allow all feelings and emotions to come by, but instead of going with them, let them float away on a raft. Just for now, let all those feelings become separate from you, lying there observing your mind. In a few minutes, 10 or more minutes, you should be able to come to a peaceful place, where all is quiet, everyone left, only you are here, observing the peaceful place.

Know and feel it convincingly, that you are this beautiful being, a gem, now shining forth, and bringing light to all those who suffer. Picture your grandfather as a healthy, vibrant, smiling person, going about, doing his favorite things he likes to do. Concentrate all your thoughts, really strongly on these positive images of him.

Imagine any lovely actions you will do with him, holding his hands, or just walking along with him. Keep focusing for a few minutes, bringing yourself back to this task if your mind wanders, or doubts arise.

Focusing is very difficult for most people, some can do it for a few seconds, some can do it for a few minutes, very few can do it for half an hour. Interruptions come, and you have to go back to the same focus.

We focus just prior to meditation, it is hard work.

So do this, and stay here as long as you can. Then let go of the images, just stay still, the emotions will come back, and you'll have to get back to life, keeping him in your heart.

Some disciplines will tell you to pray a certain way, with a certain prayer or a mantra, but for that you need a teacher to guide you.

When we practiced yoga for the benefit of a suffering being held specifically in our focused attention, it was a very hard practice. We chanted in the beginning (the Gayatri mantra), and practiced for an hour, then concluded with savasana and meditation.

For a truly uplifting inspiration I would recommend the Autobiography of a Yogi by Paramahansa Yogananda, available in paperback and ebook (free on Amazon.com, the 1946 edition, which is the best).

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Permalink Reply by Mary Elizabeth on April 30, 2012 at 1:48pm

I will send positive vibes your grandfather's way. Look up chlorophyll therapy, as well as cancer treatment through diet and liestyle. I wish I had done more and been more central in fighting cancer when my grandmother had it. I was afraid to support this diet and lifestyle as an alternative becauseof what my family might say. I regret it EVERY DAY. I wish she was here and I know if I could go back I would fight for her and be right there, feeding her raw foods all the way.

Love

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Permalink Reply by rick on April 30, 2012 at 2:04pm

I found that mike anderson's curing cancer video to be very informative. It is available at ravediet.com. Apply the principles in this video only leave out the grains and use only 80 10 10 foods. The really good thing about this video it it explains the cancer industry, the disease itself, the causes and the cures. Pretty comprehensive. Best of luck to you and your family my best wishes are with you.

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Permalink Reply by Emily on April 30, 2012 at 2:18pm

Great reccomedations everyone! I have written all your suggestions down, and will be busy researching and compiling ideas for my grandfather.

Yogaranka your advice for deepening my spiritual practice and prayer was very inspiring! I am interested what type/s of yoga do you practice?

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Permalink Reply by Yogaranka on April 30, 2012 at 3:10pm

My preferred practice springs from the Bishnu advanced series. Steady postures, lots of balancing on legs and arms, many compressions and lengthening. Instead of vinyasa, breaks of calm breath in between postures. Breathing exercises at the beginning and end of practice truly energize. Meditation and relaxation is also very transformative.
Bishnu is Yogananda's brother, so for the meditation part we follow Yogananda's guide. Powerful kriya yoga practice of breath, concentration, sense orientation and final meditation.
One of Yogananda's disciple is Roy Eugene Davis, who is doing an awesome job of spreading the teachings of his Master. His website is full of easily accessible, some free, some very inexpensive reading and listeing materials. www.csa-davis.org

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Permalink Reply by Ginger on April 30, 2012 at 2:52pm

Sending you and your grandfather prayers!

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