by Kim Rueffer, RN

Most people, who go through brain surgery for an AVM or brain aneurysm, do so on an emergency basis. Some are fortunate to discover their AVM or brain aneurysm prior to it becoming a surgical emergency. For those fortunate individual the following is offered as a guide to surgery planning. --------------------------------------------------- ----------------------------- Under no circumstances should anyone who is in need of brain surgery, ever visit a neurosurgeon office alone. Bring a family member or close friend. You are already frightened beyond belief and in that state of mind may not be able to comprehend the information being given you. The person who accompanies you will be able to recall what was said and relay the information to you. This is the most frightening time of your life, reach out for all the support you can Questions to ask the neurosurgeon Number of arteriovenous malformation and brain aneurysm surgeries they have performed? Success rate? Predicted length of actual surgery? Details of surgical procedure (ie., embolization, craniotomy, metal clips)? Recovery time expectations? Anticipated length of hospital stay? If craniotomy; staples or absorbable stitches? Type of incision ( straight, zig-zag)? Location of incision? Recommended units of blood for transfusion? Will they shave the head? Recommendations for screening of family members for AVM or brain aneurysm? Date of surgical procedure? Potential complications? You can expect the neurosurgeon to review the risks and benefits of the surgery. From the patients point of view the idea of brain surgery can be frightening. Our personalities, intelligence, instincts, capabilities, memories, "who we are" is the area about to be assaulted. How will it affect me? Based on expertise and experience doctors can only predict what you can realistically expect. Each patient and their situation is individual. --------------------------------------------------- ----------------------------- What to expect after surgery Headaches - These are a direct result of trauma to the brain. If an AVM or brain aneurysm ruptures and bleeds into the brain, the blood is very irritating to brain tissue. Often this irritation presents as headaches. Many people continue to complain of headaches many years after surgery. Itching - Most patients complain of itching along the incision, especially prior to the metal staples or sutures being removed. some patients may hear a "clicking" sound at the bone flap site. This will disappear as the edges of the bone heal. It takes 6 months to 1 year for complete healing to occur. Medications - Anticonvulsants "to prevent or control seizures". Any trauma to the brain sets the stage for seizure activity. Steroids, any surgery causes swelling. This swelling is of concern after brain surgery as the brain is housed in bone (unlike your abdomen). Hence there is nowhere for the swelling to "go". Steroids are potent medications which rapidly reduce swelling. It is of the utmost importance to take them exactly as prescribed. Fatigue - This is the most common complaint. After the initial 6 week healing process after surgery people continue to complain that even the slightest activity wears them out. Short term memory loss - Memory problems are another universal complaint after brain surgery. Depression and anger - AVMs or brain aneurysms can have devastating consequences. They also tend to strike in the prime of life. Life is going along according to plan and suddenly the rug is pulled out from under your feet. Most people will alternate between feelings of anger and depression throughout their recovery. It's perfectly normal. Transfer to a rehabilitation center - Most people have some deficits after brain surgery. It is common after recovery in the hospital to be transferred to a rehabilitation center. There, various professionals; physical therapists, occupational and speech therapists, will work with you to overcome or adapt to these deficits. Fear - Many people have said "I know they operated and removed the avm/ba, but I'm afraid it will happen again." Any twinge or headache can activate this fear. Once again, it's normal to feel this way. The good news is that gradually, with time, the fear lessens. Numbness at the incision site - Perfectly normal. Nerve endings in the scalp have been cut which causes the numb feeling Dizziness - Another common complaint after brain surgery Recovery - Doctors will tell you, "What you are able to regain in a year is what you are left with." Don't believe them! The bulk and most dramatic healing will take place in the first year after surgery, but people continue to improve for many years thereafter. One man who was in a coma for 6 months, and had 3 separate brain surgeries was told "you will never do x, y, or z independently". Four years later not only does he do "x, y, and z" independently, but 13 years later was still noticing improvements. The message in this is never give up hope! --------------------------------------------------- ----------------------------- When do I call the doctor? Fever Drainage from the incision Seizures Sudden severe headache Stiff neck --------------------------------------------------- ----------------------------- Questions to ask the surgeon on follow up visits: If clips or metal plates where inserted in the skull during surgery is it safe to have an MRI? When may I climb stairs? When may I lift (ask how many pounds)? When may I drive? When may I shower? When may I resume sexual activity? When may I return to work? When may I resume basic activities (eg. mow grass, dig gardens, housework, grocery shop)? --------------------------------------------------- ----------------------------- Helpful websites The Perspectives Network, Inc. Disability Resources On The Internet Brain Injury Resource Center --------------------------------------------------- ----------------------------- About the author. The author survived a ruptured AVM, and found most frustrating the lack of information on "what's normal" and "what to expect". This was written in the hopes that others wouldn't have to experience the same frustration