Toward the end of the summer of 1992, I began to experience an intermittent right-sided headache that, over the next several weeks, became increasingly more severe and almost constant. Having a history of migraine headaches, I thought it must be one, so I arranged to see my internist to discuss it with him. He prescribed the medication that I had always taken in the past for a migraine, but this time I didn't get any relief at all. After another visit, my internist decided that it could be a neuritis or a neuralgia and prescribed an anti-inflammatory agent and then a stronger one. As I had no relief with these medications, he referred me to a neurologist, who examined me and ordered an MRI.
The MRI demonstrated a middle cerebral artery (mca) giant brain aneurysm. After a craniotomy for repair of this aneurysm, a follow-up angiogram showed expansion of the tissue beneath the clip that had been placed to seal it off, so I had to undergo another operation. In my brain-injured state, following the first surgery, knowing that I would have to undergo surgery again, I remember the confusion I experienced when reading cards in which friends stated they were so pleased that the operation had been a success. During the second operation, the surgeons found that the segment of the artery from which the aneurysm had formed was defective and so placed fenestrated, or ring clips, around it to contain it.
Six months later, as I was finalizing plans for a trip to Switzerland, a follow-up angiogram revealed that the artery was bulging through these clips, creating several new aneurysms. This time the surgery would be more invasive. The surgeons were going to have to perform an ECIC (external carotid to internal carotid) bypass. This would involve harvesting the lesser saphenous vein from my calf and attaching it to my carotid artery, threading it through a permanent burr hole in my skull and fashioning a graft to provide alternative circulation that would bypass the aneurysm. The sixteen clips placed during the previous surgeries would have to remain in place.
As there was still blood flow through the aneurysm, embolization had to be performed five days after the bypass operation. At the time of my embolization, the procedure was still experimental. On September 8, the FDA approved this endovascular, or non-surgical, procedure for the treatment of brain aneurysms, which was necessary to completely obliterate my aneurysm. The procedure involves introducing a catheter into the femoral artery in the groin and navigating it up into the neck. A guidewire with detachable platinum coils at its tip, is then inserted into this catheter and guided up into the brain and the aneurysm itself. At the external end of this guidewire is a battery pack which provides an electrical charge that will release the coils (Guglielmi Detachable Coils, named after Guido Guglielmi, an Italian physician who pioneered the procedure) into the aneurysm. The aneurysm becomes sealed off as a result of being packed with the coils and the thrombosis or clotting of blood that results from the electrolysis required to release the coils into the aneurysm. In my case, five coils were required to seal off the aneurysm. The easy part was over.
The hard part began with persistent headaches that lasted a year from the time of the first surgery. Pain, a short-term memory deficit, problems processing information and overwhelming fatigue were the most difficult aspects of my recovery. As a nurse, I felt that information in print would have been helpful to me and my family during this time. I decided to write a brochure for future patients that would help ease the recovery process for them and their families and asked my neurosurgeons to write an introductory brochure on brain aneurysms. I feel that engaging myself in this writing exercise helped to renew neural pathways in my brain and facilitated my recovery.
I learned by attending the support group meetings for brain aneurysm patients, at Massachusetts General Hospital in Boston, that patients who suffered ruptured aneurysms had even greater difficulties during the recovery process. During a consultation with my junior neurosurgeon and his nurse one day, we decided to establish The Brain Aneurysm Foundation, for which I served as founding President for two years. An information and support resource, the foundation was created to serve the needs of brain aneurysm patients and their families. Once funding permits, the foundation will also support research on the cause and future technologies for the treatment of brain aneurysms.
The foundation was established on August 19, 1994, and is a non-profit organization with 501(c3) status as a public charity. It has published three brochures to date; An Introduction to Brain Aneurysms and Their Treatment, Recovering from Brain Aneurysm Surgery, and A Guide for the Endovascular Therapy Patient. The foundation has also published The Brain Aneurysm Foundation Support Group Manual, a guide for medical professionals available upon request.
If you would like to see a support group in your area, please contact the foundation at 66 Canal Street, Boston, MA 02114, or 617-723-3870, or by FAX 617-723-8672. Information can also be obtained via the World Wide Web on the Internet by pointing your browser to: The Brain Aneurysm Foundation, Inc.