Getting over brain surgery

A Chat with Diane Roberts Stoler, author of Coping with Mild Traumatic Brain Injury, January 23, 2000 

See http://www.drdiane.com, or write to drdiane@drdiane.com

Dr. Stoler: Thank you for inviting me here today. I had a cavernous hemangioma that was oozing for ten years. There were symptoms that the doctors ignored. In March 1990 it bled enough to cause me to pass out while driving. I had a 60-mile-an-hour head-on auto accident, causing MORE brain injury, and five months later had brain surgery. They removed the growth and now I have a hole in my brain. I have joined the discussion group and can come to visit, or you can visit me at drdiane@drdiane.com

Chatter: How was your recovery?

Dr. Stoler: Well, it’s been ten years. The first reaction, which is not uncommon, is that the doctors do not tell you anything. I had fluent speech before the brain surgery, and stuttered after. I thought I had a zillion little worms crawling across my scalp after the surgery, and no one told me that that was not uncommon. My speech is now fluent, though I still have word-finding problems.

Chatter: Did you have headaches before and after? A lot of the people I’m in touch with still have headaches after surgery.

Dr. Stoler: I never had headaches before this happened, except when I had a high fever. I had no sign that this was going on, other than lassitude. After the brain surgery I had three distinct types of headaches:

• One was the icepick headache, one that feels like someone is taking a hot metal poker and shoving it into your brain. It’s a very localized headache.
• The second was the pressure headache from the brain surgery where you just feel general pressure.
• And the last was the "headached that’s not a headache" – atypical migraines with blurred vision, slurred speech, and weakness on one side of the body. You do get an aura before it, but there’s no real headache. For four years it was diagnosed as "sensory motor seizures." These are usually caused by brain surgery (opening the skull) or whiplash (closed skull injury).

Chatter: Did you have any memory loss?

Dr. Stoler: Yes, I had various types of memory loss. There’s retrograde (loss of memory before the accident), then after the surgery, then short-term memory loss, and finally what I call "swiss cheese" memory loss.

• Retrograde. I do not remember the accident. I passed out two miles before the accident. I remember getting woozy, but nothing after that. We think of memory only as cognitive memory, but our cells and muscles also remember. That’s called muscular or body or cell memory. I have no cognitive memory of the accident. I am a health psychologist, a consultant in clinical hypnosis, and I did age regression to see if I could remember anything about the accident. I have only little snippets of cognitive memory about the accident. However I had a mild fascial release from muscular pain, and from that release I had flash-backs from the accident. But what I still have somewhere is sensory memory. So when I hear sounds like a car crashing, my body reacts.

• Events in the past that I can only remember portions of, that’s the swiss cheese effect. I can’t remember all of it, and no clues help me. For example, my husband says we were at a party. I can remember being there, but I can’t remember what happened, no matter how many clues he gives me.

• Then there’s the short-term memory. A higher-protein diet can help memory loss.

Chatter: What about motion sickness. Do you now experience motion sickness?

Dr. Stoler: I did, but no longer, thanks to a wonderful man, Dr. Igor Burdenko of Lexington, Massachusetts (http://www.burdenko.com). If you have balance problems, or motion problems, balance or gait, Dr. Budenko has revolutionized water and land therapy. I credit him for my ability to ride a bike again, to dance, to stand on one foot, and to walk normally rather than like a drunken sailor. I used to stagger and fall down and then I couldn’t get up. Now I ride my bike and do hikes.

Chatter: Did you have these symptoms right after the brain surgery?

Dr. Stoler: Yes, I had them for four years! Then the physiatrist (MD rehab doctor) said to me, "Lady, you are probably brain damaged and you are probably not going to get better. You need to go to a psychotherapist and learn how to cope with your brain damage." By luck or fate I met a woman at my local film club who told me about Dr. Budenko. She assured me he would help me. He’s the one who helped skaters Nancy Kerrigan and Oksana Baiul.

Chatter: How?

Dr. Stoler: You go to the doctor and request physical therapy/water therapy. It is covered under most health insurance. I recommend it to all my patients.

Chatter: You ride a bike without nausea? I never got my balance back after surgery.

Dr. Stoler: Yes, without nausea. Try water therapy. I do not go on roller-coasters or certain rides, and at the Omni theater there are certain effects that will cause me to get nauseous.

Another suggestion for nausea is ginger tea. Take fresh ginger root. Do not peel it. Slice it in thin slices and boil it up with a pinch of salt, then strain it and drink it with a teaspoon of honey. This will help the nausea. Do this whenever you are feeling the symptoms. At a sushi bar you can get sliced ginger, or you can get ginger candy, but with memory problems you don’t want to do sugar.

For memory problems, you want to eliminate all sugar from your diet except those from fruits. And that includes things that convert to sugar in the body like rice, potatoes, pasta, corn, all the heavy carbohydrates.

Chatter: Sugar causes memory loss?

Dr. Stoler: It doesn’t cause it, but it interferes with the synaptic connections in your brain. When someone is having severe memory problems I put them on a low-sugar diet. Fruits are okay, nuts, soybeans, vegetables, all kinds of protein, but get those sugars out of there. Try it for two weeks, and if you don’t notice a difference go back to your regular diet. It’s not good for two reasons: it interferes with the synaptic connection, and it lowers the seratonin. You need that seratonin to make the connection. Depression and anxiety also lower the seratonin. That’s why you remember better when you are relaxed.

The synaptic connections are enhanced by neuro-peptides from proteins, amino acids, protein. Soy powder, amino acid powder will help. Bluegreen algae is a high concentration of amino acids.

For breakfast I may have a high protein amino acid drink in orange juice. That’s a good breakfast: fruit, protein. You could have steak, chicken, eggs, tofu, nuts, fruit.

Chatter: I’ll have to try it, although two weeks without sugar will be tough for me.

Dr. Stoler: Yes, but if you feel better it will be worth it. You should keep a log, and ask a family member or friend to keep a log too. As with a drunk driver who doesn’t think they are weaving all over the road, someone else may have a different perception. This way you can see if it makes a difference.

Chatter: But with a high protein diet, isn’t that dangerous for your kidneys? I also have kidney tumors.

Joyce Graff: Not dangerous, but research has shown that people with partial nephrectomies do better when they lower the amount of protein, especially from animal sources, in their diets. Not eliminating it, just reducing it, because animal protein is harder for the kidney to process and therefore puts more strain on an injured kidney. Protein from vegetable sources is easier on the kidney, and it sounds like it’s the relative amounts of sugar and protein that is the goal here.

Dr. Stoler: That’s right. You can have more veggies and legumes, just reduce the refined sugars and carbs. As a chocoholic, I can tell you that a few Ghirardelli double-chocolate chocolate chips give you a quick chocolate fix with very little sugar or fat.

A very good source that you will love is roasted soybeans. I get them from Wild Harvest or Market Basket. They taste like peanuts, are yummy, and are a good source of protein, fiber, and estrogen.

I have a question for all of you. How’s the sex life? Or fatigue?

Chatter: I’m exhausted all the time, but then I have a lot on my plate. A recent death in the family, a sick parent, not to mention my brain surgery.

Dr. Stoler: I have a suggestion for you. If you’re a religious person, make time each day for prayer.

Prayer heals. If you are not religious, make time each day for some relaxing activity: meditation, soothing music, a nice bath. But DO NOT DRINK ALCOHOL. It only makes your brain function worse.

Homeopathics can help exhaustion and fatigue, and also neuro biofeedback. This is good for organization, fatigue, exhaustion and memory problems. Some of the practitioners are:

• Janet Blum, 1-800-554-6612
• Neuro Therapy Associates of New England, Natick, Massachusetts, 1-508-655-8331

Or you can call the national number

• Association of Applied Psychophysiologists and Biofeedback, 1-800-477-8892

and they can tell you where in your area there is a practitioner.

Chatter: I don’t drink alcohol – I have enough problems without it! One more question, and you already answered part of it. What about depression? Is depression a common symptom following brain surgery?

Dr. Stoler: Yes, it is. There are five types of depression.

• One is reactive depression to a trauma. If you saw your child being blown up in the Oklahoma bombing, you will be depressed. There is no prior history, there is a situation out of the ordinary, it’s a psychological reaction, and your body reacts.
• Second is a clinical depression, which is often genetic, and is a chemical imbalance.
• Another type is where there is an injury to the brain and the synaptic connections in the area of emotions are short-circuited, and that causes a neurological or organic depression.
• Another is the loss of a love or loss of a job or of identity, and that’s grief. In grieving you can feel depressed or sad.
• The fifth one is having a faulty childhood resulting in poor self-esteem or no sense of self. You are emotionally down because of your dislike for yourself. This is a psychodynamic depression.

Most clinicians only know about the last one, the psychodynamic depression. Psychiatrists have more training in the clinical depression and usually prescribe anti-depressants. Because of Vietnam there is now more understanding of post-traumatic stress depression. But in the depression related to grief, the training is almost non-existent.

Chatter: Are you more likely to find that training with a religious counselor?

Dr. Stoler: Yes, but they may also miss the other kinds. There tends to be a bias in the observer. They might assume it’s all grief, and not understand the other components. How you can tell the difference is that depression related to grief will have variance in moods – like you can go to a wake and laugh about the person and then start to cry. The variation in moods is what makes it different from a clinical biochemical depression.

There is medication that can be given for the agitation and grief that is neurologic, such as beta-blockers. A psychiatrist and most physicians would probably give an anti-depressant, but a beta-blocker is usualy more effective with neurologic issues. Sometimes medications like depacote, an anti-convulsive, can be effective.

Chatter: I’d like to mail you with some follow-up questions if I may.

Dr. Stoler: You certainly can send me e-mail at drdiane@drdiane.com. One question without charge, and then this is how I make my living. My book is Coping with Mild Traumatic Brain Injury, which you can get from my website at http://www.drdiane.com Please come to my website and visit!

Chatter: I most definitely will, and thank you for all your help.

Dr. Stoler: Thank you for inviting me. It was my privilege and honor to be with you tonight. And for each of us with one or more holes in our heads . . . good night!