My name is Lori Jayne Merritt. I am 38 years old and I have an AVM. I reside in Macon, GA with my husband Charlie and our two beautiful daughters, Paige Nicole, age 11 and Carly Jane, age 5. Their older brother Robert is just completing his fourth class year at the United States Air Force Academy in Colorado Springs.
Hello Friends and Fellow AVM Survivors,
My AVM, chronic pain and adverse side effects of my medications has taken a toll on my physical, mental and emotional health. My faculties have deteriorated to a point that I have asked my father to write this narrative for me. I can only hope that we will be successful in providing a succinct presentation of the facts as they relate to my particular AVM. I realize, after reading others stories on the Aneurysm and AVM Support site that I am not alone in my pain and frustration. We can only hope that my story will prove to be of some small benefit to others who have been diagnosed with an AVM.
Looking back over the years, I believe my problem began when I was about 10 years old. I began getting strange auras followed by very strong headaches. The pain was nothing like the headaches I experience today but they continued until I was about 16 when they became more frequent and severe. I was experiencing headaches approximately twice a week. During one particularly bad episode my parents took me to the ER for some relief. I remember being given Fioranol for the pain. The doctor said the headaches were probably caused by high school related stress and menstruation. He did recommend that I see a neurologist since I was having so many headaches at such an early age. Since 1977, I have been seen by doctors and neurologist both in the emergency room (at least 20 times - I've really lost count) or in their offices in New Jersey, Georgia, Arkansas, and Florida. I was always given a cursory examination, some medication for the pain and told there was nothing wrong that they could see. In those 20 years, not a single doctor ever suggested that I have additional testing done in order to determine the source of my headaches.
In 1997, Dr. Sharon Ash, (Macon, GA) who was treating me for a back and neck problem referred me to Dr. Spiegel to see if he could help me with my frequent and very debilitating headaches. The headaches were now severe enough to have an adverse affect on my job performance in addition to disrupting my family life. Dr. Spiegel immediately sent me to the Coliseum Hospital in Macon for a CT scan. When he received the results of the CT scan he asked me to have my husband accompany me to his office. My mind was racing, I was having a panic attack, what could be wrong? Dr. Spiegel said at first he thought it might be a cancerous growth and ordered an MRI. Oh, no! The results of the MRI indicated that I had a large AVM, not a cancerous growth. An AVM! What? I had never heard this term before. I panicked again. Well, at least it wasn't cancer and now, finally after all these years, I knew I wasn't crazy, and it wasn't "all in my mind." I am very grateful to have had such a professional, knowledgeable and efficient doctor. Dr. Spiegel then stated he didn't feel qualified nor did he know of anyone else in the Macon area with the necessary qualifications to treat my AVM. He then referred me to The Emory Neurological Center in Atlanta.
During the initial examination and consultation at Emory, Dr. Barrow, explained that I had an Arteriovenous Malformation of the left occipital area of my brain with the nidus measuring approximately 5.5 cm maximal diameter. Wow, that was a lot for me to handle. What did all that mean? After the initial shock subsided I asked him what treatment options were available. He presented the following choices:
Dr. Barrow, a neurosurgeon, determined that invasive surgery was not an option and recommended that I see Dr. Bakay and Dr. Crocker. Dr. Bakay, in consultation with Dr. Crocker then recommended Stereotactic Radiosurgery as the best course of action for my particular symptoms. My husband and I agreed and the adventure began.
June 1997
I underwent a Cerebral Angiogram procedure that once again confirmed the presence of 2.5 cm X 3.8 cm left occipital AVM. Headaches continue sporadically!
November 1997
I underwent a common carotid bilateral Angiogram. This Angiogram was obtained in a stereotactic headframe for the purposes of Radiosurgery planning. The procedure again confirmed the presence of a large AVM. Headaches continue sporadically!
November 6, 1997
I underwent the first Stereotactic Radiosurgery at Emory. Headaches continue sporadically! March 10,1998
I underwent a MRI of the brain with and without contrast to determine if the Radiosurgery was successful. The MRI reveled "No significant interval change in the size or appearance of the left occipital AVM." Headaches continue sporadically!
November 1998
Underwent MRI of the brain without Gadolinium and MRA. The MRI revealed "Left occipital lobe AVM, without significant change since 3-10-98. Headaches continue! Dr. Bakay's report indicates that "Patient doing well following stereotactic Radiosurgery"? It should be noted the headaches have continued and there has been no significant change to the AVM since 3-10-98. It was also noted that I underwent an extensive vision examination.... "CRANIAL NERVES II - XII were serially tested and found to be intact except for loss of vision in the right eye." At this point in time, the following medications were prescribed:
Headaches continue sparodically!
June - September 2000
I am again experiencing auras and have developed extreme sensitivity to light. I am now wearing dark sun glasses both in and outdoors. Dr Hewitt describes this condition as positive photophobia, positive phonophobia, positive osmophobia.
July 2000
MRI, MRA and MRV of the brain. Impression: Left occipital AVM, with some changes. No evidence of acute change.
July 2000
In addition to my Neurologist I have been under the care of Dr. David Hewitt, a pain management specialist at Emory. In his report dated 7/19/00 he notes that the frequency and severity of my headaches has increased and I am now experiencing scotomas and blurred vision. I also reported that the headaches wake me at night and are often accompanied by vomiting. I am also aware of a "whooshing" sound in my head for the past 5-6 months. I have taken Imitrex, Maxalt, Elavil, Midrin, Cafergot, Depakote and Neurotin with very little improvement to my headaches. The pain continues sporadically!
The Assesement/Differential Diagnosis stated:
During this examination in Dr. Hewitt office I developed a very severe headache and was immediately admitted to the emergency room for treatment. Dr. Hewitt scheduled another MRI, MRA, and MRV to assess and rule out a vendural fistula and follow up on the status of the AVM. He prescribed Percocet for the acute control of the pain and Calan for prophylaxis. At the time of my discharge, I was prescribed the following medications:
Headache pain continues to increase!
July 2000
The headaches continue unabated! I need help! Nothing is working! I was hospitalized for 3 days to receive DHE 45 treatments. The treatments did provide some relief for a short period of time but again the headaches returned almost immediately after I was released from the hospital. Dr. Hewitt has sent a letter to my employer regarding my neurologic problem that is a result of an occipital arteriovenous malformation which is giving me significant pain. I am so fortunate to have Supervisors that allowed me to work around my daily debilitating headache episodes. I came to work late at times, at other times I was forced to stop working and go to the break room or go home until the pain subsided enough to return to work. They have even allowed me to return to work the same day or make-up the hours at a later date. I don't know how much longer they will tolerate my erratic performance. I realize that at some point this will have to come to an end. I feel so bad. I continue to push myself, against Dr. Hewitts advice, to work only because we need the money to survive.
September 2000
I met with Dr. Michael Crawley to follow up on my AVM and chronic headaches. In his notes he states that the most recent MRI has demonstrated that while the AVM is smaller it is not obliterated. He is going to consult with Dr. Crocker to set up appropriate follow up studies in preparation for repeat Radiosurgery. He also notes that the Phenobarbital prescribed by Dr. Hewitt has completely wiped out the headaches. Yes, I was completely headache free for the first time in years! What a blessing! Unfortunately the respite from pain was short lived, lasting for approximately 45 days. While still taking Phenobarbital, the headaches returned immediately after my second Radiosurgery on November 1, 2000.
October 2000
I am now being treated at Emory, by Dr. Nelson Oyesiku, MD, Ph.D., being referred to him by Dr. Bakay.
Dr. Oyesiku notes that "three years following radiosurgical treatment her lesion has reduced in size to about 2.5 cm in nidus, but no further reduction has been seen on serial imaging in the last 6 months" Dr. Oyesiku went on to state; "we do not have her previous treatment plan and dose, but it is my suspicion she will need a repeat treatment with optimal dosing to treat this AVM. Before the procedure, we will have visual field assessment done by Dr. Nancy Newman since the main risk would include visual field deficit." Dr. Crocker and my husband were both present at this meeting with Dr. Oyesiku. We all agreed that the best course of action was to proceed with the second Radiosurgery as soon as possible.
November 1, 2000
CT Scan and Second Radiosurgery performed by Dr. Nelson Oyesiku, surgeon and Dr. Ian Crocker, radiation oncologist. After the surgery I was given steroids for 2-3 weeks to combat any swelling that may have occurred. The steroids did provide some relief but unfortunately for me the headaches gradually returned to their former glory. During November and December they occurred on a daily basis becoming more frequent and severe
December 19, 2000
Follow up MRI shows no interval radiation changes. Attending MD, Dr. Oyesiku recommends a repeat MRI in one year to monitor the rate of obliteration of the AVM.
December 19, 2000
MRI reviewed and interpreted by Dr. Chad Holder, MD. Finding: "Again noted is the large medial AVM of the left occipital lobe The nidus again measures approximately 5.5 cm in maximal diameter"
February 20, 2001
Back to Dr. Hewitt for worsening headaches. I have not had any good lasting relief from any of the medications so far. I am depressed, worn down by the chronic pain and worry about my health, my family and job. Something is wrong and they need to find out what it is! I have been prescribed escalating doses of Oxycotin up to 20 mg three p.o. q.8h. Dr. Hewitt's impression is: "Uncontrolled pain." He started me on Serazone 100 mg one p.o. b.i.d.; Valium one p.o. q.8h. p.r.n/ and Sonata 10 mg one p.o., q.h.s. to help me sleep. He said to continue with the Oxycotin for now.
March 5, 2001
Dr. Hewitt has requested that my employer allow me time needed to receive and evaluate treatment before attempting to return to work. The pain is not going away. I can't continue to work any longer. I request a Family Medical Leave.
March 22, 2001
Dr. Hewitt sent a letter to my employer advising them that I have been unable to work since March 2nd due to unrelieved head pain caused by Arteriovenous Malformation. He notes that analgesic regimen to manage my pain had not been effective and in fact the pain has increased. I have undergone trigger point injections twice with little relief. I am scheduled to receive Botox injections on April 24 from Dr. Alan Freeman. Finally, Dr. Hewitts letter states; "While we will continue to work with her analgesic regimen, at this point the unpredictability and severity of the onset of these headaches has kept her from functioning effectively in her work or home environment. At this time, it is unclear when she will be able to return to work."
APRIL 15, 2001
In addition to Dr. Jones, my Primary Care Physician, Dr. Oyesiku and Dr. Crocker my Neurologists and Dr. Hewitt, my Pain Management Specialist I am now seeing Dr. Deborah Gordon, a psychiatrist and David Strain, a Licensed Clinical Social Worker.
My current regimen of drugs include: Percocet, Oxycotin, Serazone, Valium, Stadol, Restoril, and Phenergan.
Prior to this regimen at least 14 other drugs were prescribed in an attempt to relieve my chronic headaches. These included: Dilocor, Lortab, Pamelor, Paxil, Klonopin, Tenormin, Tessalor, Elivil, Imitrex, Maxall, Midrin, Cafergot, Depakote and Neurotin.
I am out of work and still in a great deal of pain. I have submitted an application for Social Security assistance and Long Term Disability. We are anxiously awaiting a favorable reply.
I will post additional updates as new developments occur.
Good Luck and may God Bless you all.
Written by: Lee Selner, father
For: Lori Jayne Merritt