When a headache isn’t a headache, aka: AVM
On Oct.22nd my daughter and I were outside loading up my recumbent bike in the back of my truck to drive it down for service. A yellow jacket/wasp (note: angel #1) started buzzing my daughter and finally stung her under her right arm. She was soooo mad because we had plans and didn’t really have time for this. She has been stung before as we live on a 40 acre ranch in the Sierra Nevada’s. Well she came in mad and I looked at it and had her put some ice on it and take a couple on Advil. It’s now about 6 min. or less after the sting and my dd is back in the bed of the truck working on un-knotting the tie downs, when she starts to feel dizzy. Being a smart 14 year old she thinks to herself, “I better get out of the truck before I fall”. She starts to call to me and walks toward the front door. By the time she and I are meeting she loses all control of her right side and is totally a limp rag doll. I am carrying/supporting her into the house and she begins to vomit, so we head toward the bathroom. She is now propped up against the tub and I am running for the phone. You must understand we live about an hour away from the nearest large city. We have never had reason to use our local emergency system as we have only lived here a little over two years. Well the local paramedics get to her within 10 min. of my call and the ambulance within 15. Down the mountain we fly, anaphylactic shock right? Well sort of as you will see.
This could easily become a novella so I will try to give you guys the cliff note version. After spending the day (Friday the 22nd) in the ER and being treated for anaphylaxis we take dd home. By the time Monday comes and she needs to go to our primary care physician (whom was out so we saw his associate a new young man) she is weak but better except for this headache that won’t go away. She is sent home with 600 mg every 4 to 6 hours of Ibuprofen and told she is okay. Well come Wednesday morning she is throwing up. Now here is the guilty Mom part, I waited until Thursday to take her back in thinking that her tummy was tore up because of this “Super Ibuprofen” that she has been taking. We go back to the Dr. Thursday and her Dr. does an EKG and thinks we should go to the ER. Well several hours later she is seen and finally given something for her serve nausea and fluids but this headache won’t go away. Well the ER Dr. (angel # 2) says as long as she is here let’s do a CAT Scan. The test comes back and shows some bleeding in her brain. Whoa!!! Okay we’re freaked.
Up to the PICU she goes. Enter the localyocal Neuro Surgeon who proceeds to tell me and my dd who, are alone as the rest of the family are all in route, that he will need to cut her across the top of her skull, take it out and quote “dig around” to get to her thalamus (huh?) which he will have to probably cut away at least half of to get this thing out. (What thing?) We haven’t been told anything other than there is blood on her brain at this point. Then he say’s “Of course we will probably have some form of paralysis and possible other mental incapacities.” We both start to cry. This is before he even has a complete diagnosis which will determine if this is an aneurism or an AVM. He is only basing this on a CT. Finally after an angiogram she is diagnosed with an AVM (Arterial Venous Malformation). Basically this was a ticking time bomb that developed in Utero at about 6 to 8 weeks. It is a web of blood vessels that have surrounded themselves around my baby’s thalamus in the very center of her brain. She has had a stroke and a hemorrhage and will need very special medical intervention. Every Mom alarm is going off in my body. I know that a** is never going to touch her. Well we call in our forces in the family who have knowledge of who’s who in the Neuro field, plus my DH starts burning a hole in his laptop searching. Within a couple of hours we are telling Dr. Chopsalot (not real name) to refer us to a specific individual in this field who is the utmost authority in this field and start making arrangements with this Dr. as he assembles his team of real experts.
DD ends up having to wait about 18 hours until a bed in the PICU of Stanford’s Medical Lucille Packard’s Children’s Hospital in Palo Alto, Ca. is ready. She is stable though, on morphine for the pain, IV’s with fluids and Zofran for her nausea. We have her flown over in a helicopter as soon as they can take her. In comes the miracle team who has already met and discussed her case based on scan images stored on the Cd’s that were sent to them. They of course do their own diagnosis and come back with a plan of action. They had to get her BP down for a further CT and an MRI and then another anigio which they intended to not use as just a diagnostic tool but to perform a treatment procedure called an Embolization. She was not bleeding any more but was at great risk. The procedure called for a catheter to be placed in her groin area, then up through a main artery to her brain at which point she (dd), would be brought back up to a form of consciousness in order for the Neuro Radiology Dr. to determine that the area involved will not compromise any motor or neuro functions before he/they proceed. If all is going well at that point the next step is to use a form of medical “Superglue” to seal off a portion of the AVM that is being fed by the artery. This is to be done in several procedures to slowly allow the normal arteries to get use to the new flow of blood and not to over pressure the normal passage way. Also this shrinks the size of the AVM.
At this point today she has gone through two different Embolizations, one on Monday the 1st and one on the following Tuesday the 9th with her next scheduled for this Tues the 16th. She will need at least a total of 4 of these procedures and then will go through different procedure to get rid of the remaining vessels in the AVM. I will talk about this scientific marvel next time. Suffice to say that the way this AVM ruptured and the fact that is didn’t bleed directly into her brain but into her ventricle instead and although it was a significant amount of blood, she is very very lucky. The blood from the original bleeding has already started to “resolve” and is circulating out, which is sort of a spinal meningitis type thing that is temporary. The stats for this AVM are; 2 – 3 % chance of a spontaneous bleed each year. Each episode has a 10 – 15 % chance of death and a 20 – 30% chance of permanent neurologic damage.
My dd is a motocross rider, she has a MX bike, she is a blk belt in TKD, she rides horses and she is a very active girl. Had this thing ruptured in another way we could have been in a very different situation. We are certainly not out of the woods but we did get to bring her home for the weekend and she is only taking vicodin for the pain now which is soooo much better. She had tickets to a freestyle MX event in San Diego this weekend and was bummed about not being able to go. One of her Drs. told her that “Hey think about it, you have had two brain surgeries in the past week, maybe you should take it slow.” Ha Ha….. Whew!!!
So here we are After 5 CT Scans, 1 MRI, 3 Angiograms, 2 Embolizations, 4 trips to PICU, 2 trips to a regular floor and more pokes prods and meds than I can count. All these procedures with her enduring massive massive pain and receiving tons of morphine.
I can’t believe that she has gone through so much and her spirits are so high and she feels so great. She has even joked about being officially “stuck up” now. She also joked with the Drs. About the fact that she hasn’t ever been as bruised or sore as she is now so she doesn’t want to hear any complaining about her motorcycle, which she has never gotten this sore from. What a kid huh? (Proud Ma here)
Sorry, this really is the cliff notes version but I wanted to share with you all since I had never heard of this before and although it is rare it does exist. Furthermore I wanted you to know that getting a second opinion and doing your own research is always always a must. Keep us in your thoughts and prayers.
Thanks, Debbie aka WildPony
On Oct.22nd my daughter and I were outside loading up my recumbent bike in the back of my truck to drive it down for service. A yellow jacket/wasp (note: angel #1) started buzzing my daughter and finally stung her under her right arm. She was soooo mad because we had plans and didn’t really have time for this. She has been stung before as we live on a 40 acre ranch in the Sierra Nevada’s. Well she came in mad and I looked at it and had her put some ice on it and take a couple on Advil. It’s now about 6 min. or less after the sting and my dd is back in the bed of the truck working on un-knotting the tie downs, when she starts to feel dizzy. Being a smart 14 year old she thinks to herself, “I better get out of the truck before I fall”. She starts to call to me and walks toward the front door. By the time she and I are meeting she loses all control of her right side and is totally a limp rag doll. I am carrying/supporting her into the house and she begins to vomit, so we head toward the bathroom. She is now propped up against the tub and I am running for the phone. You must understand we live about an hour away from the nearest large city. We have never had reason to use our local emergency system as we have only lived here a little over two years. Well the local paramedics get to her within 10 min. of my call and the ambulance within 15. Down the mountain we fly, anaphylactic shock right? Well sort of as you will see.
This could easily become a novella so I will try to give you guys the cliff note version. After spending the day (Friday the 22nd) in the ER and being treated for anaphylaxis we take dd home. By the time Monday comes and she needs to go to our primary care physician (whom was out so we saw his associate a new young man) she is weak but better except for this headache that won’t go away. She is sent home with 600 mg every 4 to 6 hours of Ibuprofen and told she is okay. Well come Wednesday morning she is throwing up. Now here is the guilty Mom part, I waited until Thursday to take her back in thinking that her tummy was tore up because of this “Super Ibuprofen” that she has been taking. We go back to the Dr. Thursday and her Dr. does an EKG and thinks we should go to the ER. Well several hours later she is seen and finally given something for her serve nausea and fluids but this headache won’t go away. Well the ER Dr. (angel # 2) says as long as she is here let’s do a CAT Scan. The test comes back and shows some bleeding in her brain. Whoa!!! Okay we’re freaked.
Up to the PICU she goes. Enter the localyocal Neuro Surgeon who proceeds to tell me and my dd who, are alone as the rest of the family are all in route, that he will need to cut her across the top of her skull, take it out and quote “dig around” to get to her thalamus (huh?) which he will have to probably cut away at least half of to get this thing out. (What thing?) We haven’t been told anything other than there is blood on her brain at this point. Then he say’s “Of course we will probably have some form of paralysis and possible other mental incapacities.” We both start to cry. This is before he even has a complete diagnosis which will determine if this is an aneurism or an AVM. He is only basing this on a CT. Finally after an angiogram she is diagnosed with an AVM (Arterial Venous Malformation). Basically this was a ticking time bomb that developed in Utero at about 6 to 8 weeks. It is a web of blood vessels that have surrounded themselves around my baby’s thalamus in the very center of her brain. She has had a stroke and a hemorrhage and will need very special medical intervention. Every Mom alarm is going off in my body. I know that a** is never going to touch her. Well we call in our forces in the family who have knowledge of who’s who in the Neuro field, plus my DH starts burning a hole in his laptop searching. Within a couple of hours we are telling Dr. Chopsalot (not real name) to refer us to a specific individual in this field who is the utmost authority in this field and start making arrangements with this Dr. as he assembles his team of real experts.
DD ends up having to wait about 18 hours until a bed in the PICU of Stanford’s Medical Lucille Packard’s Children’s Hospital in Palo Alto, Ca. is ready. She is stable though, on morphine for the pain, IV’s with fluids and Zofran for her nausea. We have her flown over in a helicopter as soon as they can take her. In comes the miracle team who has already met and discussed her case based on scan images stored on the Cd’s that were sent to them. They of course do their own diagnosis and come back with a plan of action. They had to get her BP down for a further CT and an MRI and then another anigio which they intended to not use as just a diagnostic tool but to perform a treatment procedure called an Embolization. She was not bleeding any more but was at great risk. The procedure called for a catheter to be placed in her groin area, then up through a main artery to her brain at which point she (dd), would be brought back up to a form of consciousness in order for the Neuro Radiology Dr. to determine that the area involved will not compromise any motor or neuro functions before he/they proceed. If all is going well at that point the next step is to use a form of medical “Superglue” to seal off a portion of the AVM that is being fed by the artery. This is to be done in several procedures to slowly allow the normal arteries to get use to the new flow of blood and not to over pressure the normal passage way. Also this shrinks the size of the AVM.
At this point today she has gone through two different Embolizations, one on Monday the 1st and one on the following Tuesday the 9th with her next scheduled for this Tues the 16th. She will need at least a total of 4 of these procedures and then will go through different procedure to get rid of the remaining vessels in the AVM. I will talk about this scientific marvel next time. Suffice to say that the way this AVM ruptured and the fact that is didn’t bleed directly into her brain but into her ventricle instead and although it was a significant amount of blood, she is very very lucky. The blood from the original bleeding has already started to “resolve” and is circulating out, which is sort of a spinal meningitis type thing that is temporary. The stats for this AVM are; 2 – 3 % chance of a spontaneous bleed each year. Each episode has a 10 – 15 % chance of death and a 20 – 30% chance of permanent neurologic damage.
My dd is a motocross rider, she has a MX bike, she is a blk belt in TKD, she rides horses and she is a very active girl. Had this thing ruptured in another way we could have been in a very different situation. We are certainly not out of the woods but we did get to bring her home for the weekend and she is only taking vicodin for the pain now which is soooo much better. She had tickets to a freestyle MX event in San Diego this weekend and was bummed about not being able to go. One of her Drs. told her that “Hey think about it, you have had two brain surgeries in the past week, maybe you should take it slow.” Ha Ha….. Whew!!!
So here we are After 5 CT Scans, 1 MRI, 3 Angiograms, 2 Embolizations, 4 trips to PICU, 2 trips to a regular floor and more pokes prods and meds than I can count. All these procedures with her enduring massive massive pain and receiving tons of morphine.
I can’t believe that she has gone through so much and her spirits are so high and she feels so great. She has even joked about being officially “stuck up” now. She also joked with the Drs. About the fact that she hasn’t ever been as bruised or sore as she is now so she doesn’t want to hear any complaining about her motorcycle, which she has never gotten this sore from. What a kid huh? (Proud Ma here)
Sorry, this really is the cliff notes version but I wanted to share with you all since I had never heard of this before and although it is rare it does exist. Furthermore I wanted you to know that getting a second opinion and doing your own research is always always a must. Keep us in your thoughts and prayers.
Thanks, Debbie aka WildPony
