A little bit about myself, I am a 34 year old married mother of 2 beautiful children. About 8 years ago, I had a brief episode in which the entire right side of my body went numb. The paramedics were called but by the time they arrived the feeling had subsided. It was suggested that it was probably a pinched nerve. About a year ago I started experiencing a 'tingling' on the right hand side of my face and arm. I dicussed this with a doctor who thought it was most likely a pinched nerve. At the time the 'tingling' sort of came and went so I ignored it. In August I went back to the doctor who suggested that I get an MRI. The radiologist report of the MRI indicated that I had a 'cryptic AVM' with a minimal hemorrhage in the left frontal lobe. I was then sent for an MRA. The MRA was normal.
The 'tingling' on the right hand side of my face and arm does not fade away like it used to. In addition, I have noticed the feeling in right leg/foot. Occasionally, I have blurriness out of my right eye. I also get pain in my neck and right ear. At times, the top of my head is extremely sensitive when touched (has anyone had this symptom?). I find that the symptoms are worse at the end of a work day.
I have been to see two neurosurgeons. One believes that it is a cryptic AVM and the other believes that it is a venous angioma. Both agree that it is in the area that controls the motor skills of my right hand side and is inoperable. They have recommended that I have annual MRI's done to monitor the progress of the AVM. One of the neurosurgeons has indicated that he is not sure that the symptoms I am experiencing are due to the 'cryptic AVM/venous angioma'. He suggested that I get a full neurological exam by a neurologist. Both have said 'go live a normal life' without ANY restrictions (including physical activities).
I've since been to see a neurologist. He believes that the 'tingling' is due to a 'cryptic AVM' because 'venous angiomas' typically do not bleed or create neurological symptoms. Since the 'cryptic AVM' is located in the "area that controls the motor skills of my right hand side" and its my right hand side that is bothering me - he believes they are related. Sounds logical to me. He recommended an EEG. The first one showed some abnormalities (slowing down) in the left temporal lobe. He has recommended another one which is scheduled for next week.
My story has just begun. I am thankful that the neurological symptoms I am experiencing are merely discomforting and not debilitating or painful. But it is a little bit scary knowing that I have it and there is really nothing I can do about it. Fortunately, I have very low blood pressure. Prior to finding out about the AVM I used to jog and lift weights. Despite the doctor's advice to 'live a normal life' - I worry about tempting fate. On the one hand I think I should 'get back on the horse' and go back to my normal activities - yet on the other hand I'm scared I'll do something to pop a blood vessel.
And of course, I wonder about other things. Like whether there is any data which indicates:
Whether I can expect my neurological symptoms to remain the same or worsen?
Is there a relationship between stress and increased/worsening of neurological deficits?
Once you have had an AVM which has hemorrhaged, how does this affect your life expectancy? Please send me an e-mail if anyone knows of someone above the age of 80 who was diagnosed with an AVM which hemorrhaged in their 20/30's.
Does anyone wear a bracelet or ID with information about their AVM, such as its location?
I am so glad I found this web site. I have found so many of your stories to be heartbreaking and inspirational. They have all been very touching and informational. Thank you for sharing your stories. My hearts and prayers go out to all of you.
Update: 29 Apr 2002
As my doctor had recommended I had another EEG. The second EEG also showed a slowing down in the left temporal area. I also had a neuro-psych exam performed. This test showed that I have problems with my short-term memory. This can also be contributed to the AVM (or venous angioma).
In May of 2001, I had a second MRI that showed no change in the AVM. In response, my neurologist said that unless my symptoms change, I could wait another 2 years before having another MRI.
At the beginning of 2002, I decided to resume regular exercise (daily aerobics) - since the surgeons had said 'to go ahead and lead a normal life with no limitations. A few weeks later I began to have hourly mini-seizures. It would feel like the right side of my head was freezing up and this would gradually continue down through my right arm. I understand that these seizures are called 'Jacksonian Marches'. In addition, I experienced a severe headache - worst than I have ever had. Of course, I promptly called by neurologist office. Unfortunately, they told me that my neurologist was forced to retire due to a sudden illness. I was able to get my General Doctor to order another MRI.
After getting the MRI results, I talked with another neurologist. This neurologist said that he was not qualified to analyze and compare the MRI's. He indicated that he felt this was a 'surgical' situation that should be monitored by a neurosurgeon versus a neurologist. I was glad he was honest.
So then I took the MRI's to a neurosurgeon (and medical director) at the Gamma Knife center. He agreed with previous opinions of surgeons. Basically, that this may not be an AVM but a venous angioma. He felt unsure about whether the AVM has actually bled and felt that it is unlikely that it will ever bleed. He agreed that due to its location it is inoperable. He also felt that this 'AVM/venous angioma' could not be the cause of my symptoms. He did not notice any change when compared with previous MRI's.
Still the neurologist says that these symptoms can ONLY be related to the AVM. The neurologist says that it must be an AVM in order to be causing these symptoms because venous angiomas do not cause these types of side affects.
The fact the surgeons and neurologist do not agree on the source of the problem brings me little comfort. I hope the surgeons are right in that they say it will not bleed again; but I agree with the neurologist that this is the source of the problem.
I continue to have the same symptoms - tingling/weakness on my right side, or increased pain on the top of my head. The hardest thing I find is the 'mental stress', which occurs when my symptoms get worse. For example, when I start noticing an increase in the seizures or symptoms - my fear is that my AVM may be getting ready to explode. It's like a ticking time bomb. It's been a while since I first found out, so for the most part I ignore it. But...every once in a while it gets to me.