Well we were in the er again today. I think my son had another “focal seizure” or whatever you want to call it. This time he wasn’t exerting himself. We were car shopping. On top of everything happening my husbands old, old car died and we decided to doate it to Make a Wish. Anyways he started to look not well. His face was red and he said he didn’t feel good, but couldn’t discribe what was bothering him. I called the Drs office we’ve been working with at Children’s in Mpls and they said I could take him to the er or maybe take him home to rest. We decided to take him to the er. On the way I was asking him simple questions like what his Grandma’s name is(my mom) and what his math teachers name was and he couldn’t remember. They did a CT to make sure he hadn’t had a bleed and it came back ok. He seemed confused and didn’t feel well for about an 2 hours and then he seemed to come out of it. We have an appoinment with the nuerosurgen, who does crainiotomies, on Monday. It was scary today and I thank God that it wasn’t a bleed, but it makes us think we should do something soonner rather then later and definatley we are seriously considering the crainiotomy. Also, the nuerologist from Mayo suggested that route for us as well, he is such a great doctor. I’m sure I’ll have more to write soon.
Mary (Jaime’s Mom) said:
Hi Rachel, I’ve just been catching up on the conversation. This is a good thread. First let me say I’m so sorry to read about your son. Reading about your struggle to make the right decision brings back such strong memories. I’m not sure of what to say about the exercised induced symptoms. What I can say is that my daughter always had headaches but once she hit puberty, at specific times of the month, the symptoms were way more accute. By this I mean we could literally see the blood pulsing through her face/nose area. This isn’t the same thing as exercise but I do believe the blood pressure highlighted the problem. The “episode” you describe sounds exactly like an incident which my Jaime experienced. For Jaime this happened at school after her surgery while weaning her off the anti seizure medication. All involved called it a seizure.
As for treatment options, we were told that the smaller AVMs are more risky for bleeding. We were told to think of it like a tree in a storm. If the more mature tree breaks it’s a big problem but, in general, they hold up better than the little saplings. Both can snap but the bigger stronger tree/vein is stronger and less likely to break. It’s a personal decision but we were glad we went with the surgery, none of us could bear the thought of living with this situation for 3 years hoping it didn’t bleed. Then there was the risk of radiation side effects for the rest of her life. It was too much for us. Brain surgery is scary…when you first hear the word you go into shock. How can this scary word be a part of our lives? It’s different for everyone but we were glad we went this route when we found that in addition to the AVM, Jaime had 3 aneurysms lurking in right next to the AVM. I’m assuming if you’ve had the angiogram that this isn’t the case for you. Not sure. As for recovery time, you’d be amazed ! We were at a Paul McCartney concert with my daughter 1 week to the day after crainiotomy. She was running 2 weeks after surgery (not a lot but…it was a start). Her surgery was mid July and she ran cross country that September. It’s amazing how quickly kids heal.
I’ll be praying for you, your son, your husband and family while you weigh your options. Whatever you decide please know that you have our support and that there is a light at the end of this dark tunnel called AVM.
My daughter is 8 and has had two craniotomies to resect AVMs. I cannot speak to the exercise-induced part because my daughter’s rupture was not due to exercise.
I believe the major difference between gamma and surgical resection is that gamma is a process that can take 5 years before you know for sure if the AVM has been obliterated. With surgical resection, it’s gone immediately. So you do have to wait to find out for sure if it’s gone. Both carry risk of damaging brain tissue. The key here is to deal with the AVM before it ruptures, because a rupture runs the risk of major brain tissue damage (depending again on the location of the AVM). I preferred the surgery because it eliminated the AVM immediately and didn’t require radiation.
My daughter has many visual deficits because of her ruptured AVM. She has had four eye doctors we feel like we should trust. In the end, I am trying to listen to each one and make a decision about which one I should simply follow his/her advice and take a leap of faith. If you’re in a major hospital and talking to people you trust, there may be a point when you simply have to make your decision about who to trust based on your gut instinct and your son’s. He’s 13 and old enough to know if he feels comfortable with a doctor or not.
We live in the Midwest. The first surgery was here in our hometown because it was an emergency and we didn’t have the time to second-guess anything. A year later when things were going downhill again, we were referred to Mayo Clinic in Rochester, Minn. Even our neurosurgeon at Mayo only sees about a dozen AVMs a year. When we went to Mayo, the neurosurgeon did the cerebral angio, followed by MRI. Only then did he make a recommendation.
Best wishes. Let us know how your son is doing,
Tina
Hey Tina, We live in Minnesota and have been to the Mayo and Children’s in Mpls. What doctor did you see at Mayo. We saw Dr. Wetjin and Dr. Link both neurosurgens. Dr. Link also does gamma knife. We were basically seeing them for a 2nd opinion and to find out more about gamma knife. They both said they would not do emolization with open brain surgery. The dr. in the cities recommends emobolization. The had thing is getting different opinions from all very esteemed doctors. My son has a smaller lesions 2.5 cm x 1.5(about). An angiogram was done and this is what they recommended.
Once you went to Mayo what was their plan of action? How is your daughter doing now. I pray everything is okay and that you find a wonderful eye doctor that is right for your family.
Tina White said:
Rachel,
My daughter is 8 and has had two craniotomies to resect AVMs. I cannot speak to the exercise-induced part because my daughter’s rupture was not due to exercise.
I believe the major difference between gamma and surgical resection is that gamma is a process that can take 5 years before you know for sure if the AVM has been obliterated. With surgical resection, it’s gone immediately. So you do have to wait to find out for sure if it’s gone. Both carry risk of damaging brain tissue. The key here is to deal with the AVM before it ruptures, because a rupture runs the risk of major brain tissue damage (depending again on the location of the AVM). I preferred the surgery because it eliminated the AVM immediately and didn’t require radiation.
My daughter has many visual deficits because of her ruptured AVM. She has had four eye doctors we feel like we should trust. In the end, I am trying to listen to each one and make a decision about which one I should simply follow his/her advice and take a leap of faith. If you’re in a major hospital and talking to people you trust, there may be a point when you simply have to make your decision about who to trust based on your gut instinct and your son’s. He’s 13 and old enough to know if he feels comfortable with a doctor or not.
We live in the Midwest. The first surgery was here in our hometown because it was an emergency and we didn’t have the time to second-guess anything. A year later when things were going downhill again, we were referred to Mayo Clinic in Rochester, Minn. Even our neurosurgeon at Mayo only sees about a dozen AVMs a year. When we went to Mayo, the neurosurgeon did the cerebral angio, followed by MRI. Only then did he make a recommendation.
Best wishes. Let us know how your son is doing, Tina
Dr. Wetjen did my daughter’s surgery. He did a great job. Surgery was Friday. We were home by Monday night. Dr. Wetjen stopped by every day all weekend to check on my daughter, something I am told is highly unusual for a doctor even at Mayo. Dr. Mack is the neurologist we see at Mayo. I have been told he is one of the best in the country.
First, Dr. Wetjen ordered the cerebral angio. We immediately found out my daughter’s AVM had regrown. He wanted us back in a week for an MRI. Both were done under anesthesia. The day of the MRI, Dr. Wetjen said he thought our daughter needed a craniotomy. We agreed, scheduled a date for about a month later. We had a quick check-in with him morning before surgery, then reported to St. Marys morning of surgery. They did MRI to get correct position before surgery, then operated, then did another angio to make sure the AVM was gone before they closed up the skull with a titanium plate and screws.
Surgery started around 9am and was completed around 3pm. We got to see her around 6pm. She was eating dinner by 9pm the day of surgery. She got up and walked to the bathroom during the night. She ate normal meals and even went to the playroom for a while.
Our disadvantage is that Mayo is about a 4-hour drive. That makes it tough to use them as our regular doctors. We now have a complete set of doctors at Mayo and a complete set at home – roughly 16 total. At Mayo, we have Drs. Wetjen, Mack (they work in tandem), Brodsky (neuro ophthalmology), Brown (fabulous neuropsych), Logan (psychiatrist) and Nash (physiatrist).
Our daughter has deficits – can’t be avoided with two brain surgeries. But she’s doing pretty well in most respects. The vision remains and will always be her biggest deficit. We are considering letting Brodsky do surgery on the eye muscles to try to improve the double vision. But our daughter is having some neuro type issues right now, so it’s not at the top of our list of concerns – until we can definitively eliminate any brain issues.
Please feel free to let me know if you have any other questions.
Good luck,
Tina
Rachel Dufault said:
Hey Tina, We live in Minnesota and have been to the Mayo and Children's in Mpls. What doctor did you see at Mayo. We saw Dr. Wetjin and Dr. Link both neurosurgens. Dr. Link also does gamma knife. We were basically seeing them for a 2nd opinion and to find out more about gamma knife. They both said they would not do emolization with open brain surgery. The dr. in the cities recommends emobolization. The had thing is getting different opinions from all very esteemed doctors. My son has a smaller lesions 2.5 cm x 1.5(about). An angiogram was done and this is what they recommended. Once you went to Mayo what was their plan of action? How is your daughter doing now. I pray everything is okay and that you find a wonderful eye doctor that is right for your family.
Tina White said:
Rachel,
My daughter is 8 and has had two craniotomies to resect AVMs. I cannot speak to the exercise-induced part because my daughter's rupture was not due to exercise.
I believe the major difference between gamma and surgical resection is that gamma is a process that can take 5 years before you know for sure if the AVM has been obliterated. With surgical resection, it's gone immediately. So you do have to wait to find out for sure if it's gone. Both carry risk of damaging brain tissue. The key here is to deal with the AVM before it ruptures, because a rupture runs the risk of major brain tissue damage (depending again on the location of the AVM). I preferred the surgery because it eliminated the AVM immediately and didn't require radiation.
My daughter has many visual deficits because of her ruptured AVM. She has had four eye doctors we feel like we should trust. In the end, I am trying to listen to each one and make a decision about which one I should simply follow his/her advice and take a leap of faith. If you're in a major hospital and talking to people you trust, there may be a point when you simply have to make your decision about who to trust based on your gut instinct and your son's. He's 13 and old enough to know if he feels comfortable with a doctor or not.
We live in the Midwest. The first surgery was here in our hometown because it was an emergency and we didn't have the time to second-guess anything. A year later when things were going downhill again, we were referred to Mayo Clinic in Rochester, Minn. Even our neurosurgeon at Mayo only sees about a dozen AVMs a year. When we went to Mayo, the neurosurgeon did the cerebral angio, followed by MRI. Only then did he make a recommendation.
Best wishes. Let us know how your son is doing, Tina
Hi Tina,
It sounds like her last surgery went really well. It must be hard dealing with all of the neuro stuff that comes with it.
Mayo is about 2 hours from us. We are thinking about doing the surgery up here with local doctor. We have another son and it might be easier for us to closer to home. The doctor up here is very good and I’ve got a lot of good feed back from people who have used him. There is another mom on this site whose daughter just had surgery done by him and they were very happy with him. It is such a rare condition, I guess we are blessed to have gotten opinions from the top docs in our area. Thank you so much for all of the details. I’ll be praying that your daughters neuo problems get better and that her eye sight can be fixed. Rachel
Tina White said:
Rachel,
Dr. Wetjen did my daughter’s surgery. He did a great job. Surgery was Friday. We were home by Monday night. Dr. Wetjen stopped by every day all weekend to check on my daughter, something I am told is highly unusual for a doctor even at Mayo. Dr. Mack is the neurologist we see at Mayo. I have been told he is one of the best in the country.
First, Dr. Wetjen ordered the cerebral angio. We immediately found out my daughter’s AVM had regrown. He wanted us back in a week for an MRI. Both were done under anesthesia. The day of the MRI, Dr. Wetjen said he thought our daughter needed a craniotomy. We agreed, scheduled a date for about a month later. We had a quick check-in with him morning before surgery, then reported to St. Marys morning of surgery. They did MRI to get correct position before surgery, then operated, then did another angio to make sure the AVM was gone before they closed up the skull with a titanium plate and screws.
Surgery started around 9am and was completed around 3pm. We got to see her around 6pm. She was eating dinner by 9pm the day of surgery. She got up and walked to the bathroom during the night. She ate normal meals and even went to the playroom for a while.
Our disadvantage is that Mayo is about a 4-hour drive. That makes it tough to use them as our regular doctors. We now have a complete set of doctors at Mayo and a complete set at home – roughly 16 total. At Mayo, we have Drs. Wetjen, Mack (they work in tandem), Brodsky (neuro ophthalmology), Brown (fabulous neuropsych), Logan (psychiatrist) and Nash (physiatrist).
Our daughter has deficits – can’t be avoided with two brain surgeries. But she’s doing pretty well in most respects. The vision remains and will always be her biggest deficit. We are considering letting Brodsky do surgery on the eye muscles to try to improve the double vision. But our daughter is having some neuro type issues right now, so it’s not at the top of our list of concerns – until we can definitively eliminate any brain issues.
Please feel free to let me know if you have any other questions.
Good luck, Tina
Rachel Dufault said:
Hey Tina, We live in Minnesota and have been to the Mayo and Children’s in Mpls. What doctor did you see at Mayo. We saw Dr. Wetjin and Dr. Link both neurosurgens. Dr. Link also does gamma knife. We were basically seeing them for a 2nd opinion and to find out more about gamma knife. They both said they would not do emolization with open brain surgery. The dr. in the cities recommends emobolization. The had thing is getting different opinions from all very esteemed doctors. My son has a smaller lesions 2.5 cm x 1.5(about). An angiogram was done and this is what they recommended. Once you went to Mayo what was their plan of action? How is your daughter doing now. I pray everything is okay and that you find a wonderful eye doctor that is right for your family.
Tina White said:
Rachel,
My daughter is 8 and has had two craniotomies to resect AVMs. I cannot speak to the exercise-induced part because my daughter’s rupture was not due to exercise.
I believe the major difference between gamma and surgical resection is that gamma is a process that can take 5 years before you know for sure if the AVM has been obliterated. With surgical resection, it’s gone immediately. So you do have to wait to find out for sure if it’s gone. Both carry risk of damaging brain tissue. The key here is to deal with the AVM before it ruptures, because a rupture runs the risk of major brain tissue damage (depending again on the location of the AVM). I preferred the surgery because it eliminated the AVM immediately and didn’t require radiation.
My daughter has many visual deficits because of her ruptured AVM. She has had four eye doctors we feel like we should trust. In the end, I am trying to listen to each one and make a decision about which one I should simply follow his/her advice and take a leap of faith. If you’re in a major hospital and talking to people you trust, there may be a point when you simply have to make your decision about who to trust based on your gut instinct and your son’s. He’s 13 and old enough to know if he feels comfortable with a doctor or not.
We live in the Midwest. The first surgery was here in our hometown because it was an emergency and we didn’t have the time to second-guess anything. A year later when things were going downhill again, we were referred to Mayo Clinic in Rochester, Minn. Even our neurosurgeon at Mayo only sees about a dozen AVMs a year. When we went to Mayo, the neurosurgeon did the cerebral angio, followed by MRI. Only then did he make a recommendation.
Best wishes. Let us know how your son is doing, Tina
Our first craniotomy was done on an emergency basis in our hometown. We absolutely love that neurosurgeon, but he was a “floater” and only there for a short time. What a miracle it was to have a skilled surgeon who has amazing bedside manner when we arrive with our daughter in very bad shape.
If you’re comfortable with your local neurosurgeon, that’s terrific. We have a total of three children, so that juggling was very difficult and stressful. My husband and I rotated sleeping at the hospital and rehab center with our daughter.
Best wishes. Please keep me updated how your son is doing. You’re very fortunate to catch this before it bleeds. Remember that’s a very positive thing.
– Tina White
Rachel Dufault said:
Hi Tina, It sounds like her last surgery went really well. It must be hard dealing with all of the neuro stuff that comes with it.
Mayo is about 2 hours from us. We are thinking about doing the surgery up here with local doctor. We have another son and it might be easier for us to closer to home. The doctor up here is very good and I've got a lot of good feed back from people who have used him. There is another mom on this site whose daughter just had surgery done by him and they were very happy with him. It is such a rare condition, I guess we are blessed to have gotten opinions from the top docs in our area. Thank you so much for all of the details. I'll be praying that your daughters neuo problems get better and that her eye sight can be fixed. Rachel
Tina White said:
Rachel,
Dr. Wetjen did my daughter's surgery. He did a great job. Surgery was Friday. We were home by Monday night. Dr. Wetjen stopped by every day all weekend to check on my daughter, something I am told is highly unusual for a doctor even at Mayo. Dr. Mack is the neurologist we see at Mayo. I have been told he is one of the best in the country.
First, Dr. Wetjen ordered the cerebral angio. We immediately found out my daughter's AVM had regrown. He wanted us back in a week for an MRI. Both were done under anesthesia. The day of the MRI, Dr. Wetjen said he thought our daughter needed a craniotomy. We agreed, scheduled a date for about a month later. We had a quick check-in with him morning before surgery, then reported to St. Marys morning of surgery. They did MRI to get correct position before surgery, then operated, then did another angio to make sure the AVM was gone before they closed up the skull with a titanium plate and screws.
Surgery started around 9am and was completed around 3pm. We got to see her around 6pm. She was eating dinner by 9pm the day of surgery. She got up and walked to the bathroom during the night. She ate normal meals and even went to the playroom for a while.
Our disadvantage is that Mayo is about a 4-hour drive. That makes it tough to use them as our regular doctors. We now have a complete set of doctors at Mayo and a complete set at home -- roughly 16 total. At Mayo, we have Drs. Wetjen, Mack (they work in tandem), Brodsky (neuro ophthalmology), Brown (fabulous neuropsych), Logan (psychiatrist) and Nash (physiatrist).
Our daughter has deficits -- can't be avoided with two brain surgeries. But she's doing pretty well in most respects. The vision remains and will always be her biggest deficit. We are considering letting Brodsky do surgery on the eye muscles to try to improve the double vision. But our daughter is having some neuro type issues right now, so it's not at the top of our list of concerns -- until we can definitively eliminate any brain issues.
Please feel free to let me know if you have any other questions.
Good luck, Tina
Rachel Dufault said:
Hey Tina, We live in Minnesota and have been to the Mayo and Children's in Mpls. What doctor did you see at Mayo. We saw Dr. Wetjin and Dr. Link both neurosurgens. Dr. Link also does gamma knife. We were basically seeing them for a 2nd opinion and to find out more about gamma knife. They both said they would not do emolization with open brain surgery. The dr. in the cities recommends emobolization. The had thing is getting different opinions from all very esteemed doctors. My son has a smaller lesions 2.5 cm x 1.5(about). An angiogram was done and this is what they recommended. Once you went to Mayo what was their plan of action? How is your daughter doing now. I pray everything is okay and that you find a wonderful eye doctor that is right for your family.
Tina White said:
Rachel,
My daughter is 8 and has had two craniotomies to resect AVMs. I cannot speak to the exercise-induced part because my daughter's rupture was not due to exercise.
I believe the major difference between gamma and surgical resection is that gamma is a process that can take 5 years before you know for sure if the AVM has been obliterated. With surgical resection, it's gone immediately. So you do have to wait to find out for sure if it's gone. Both carry risk of damaging brain tissue. The key here is to deal with the AVM before it ruptures, because a rupture runs the risk of major brain tissue damage (depending again on the location of the AVM). I preferred the surgery because it eliminated the AVM immediately and didn't require radiation.
My daughter has many visual deficits because of her ruptured AVM. She has had four eye doctors we feel like we should trust. In the end, I am trying to listen to each one and make a decision about which one I should simply follow his/her advice and take a leap of faith. If you're in a major hospital and talking to people you trust, there may be a point when you simply have to make your decision about who to trust based on your gut instinct and your son's. He's 13 and old enough to know if he feels comfortable with a doctor or not.
We live in the Midwest. The first surgery was here in our hometown because it was an emergency and we didn't have the time to second-guess anything. A year later when things were going downhill again, we were referred to Mayo Clinic in Rochester, Minn. Even our neurosurgeon at Mayo only sees about a dozen AVMs a year. When we went to Mayo, the neurosurgeon did the cerebral angio, followed by MRI. Only then did he make a recommendation.
Best wishes. Let us know how your son is doing, Tina
Hi Rachel…we were faced with the same decision Gamma vs surgery. We were told by one surgeon that our son was inoperable because of the location and we did get other opinions as well as research, research, research to try to decide what to do. My husband was leaning toward Gamma for a short time (but I never was). For for us…after a few opinions and lots of research, surgery was what we felt was the best decision for Trevor. We did get several opinions and discussed at lenght with each doctor why they felt one way or the other. We were told pretty much the same information that Susan Troop has relayed in her replies. Whenever possible, they choose to resect the AVMs in kids; Smaller AVMs tend to be more likely to bleed; gamma although specific it is not as specific as surgery and can affect other areas. You will not see the true deficits until years into the process whereas surgery the deficit will be apparent immediately (if there is one) and rehab would be needed then. For us, one of the reasons that we decided surgery (and there were many reasons) was that if he did wake with deficits, he was at a young age where his brain had a tremendous ability to re-learn/re-wire to accomplish task. If we went with gamma then we wouldn’t know what his deficit would be and his brain would be more hard wired therefore potentially harder to re-learn what he needed. We didn’t like the potential risk of a bleed over time. Trevor had already bled once so there was an increase risk that he would bleed again. I know they say that a bleed can happen at anytime whether exercising or not but to me the idea that he would be actively playing sports,increasing his blood pressure dramatically was too scary that it may cause a bleed. Believe me if the various opinions did not feel that surgery was an option then we would be going down the gamma road but based upon the information we had at the time, we decided surgery. Thankfully our Trevor is AVM free and has NO deficits. Perhaps you could go for another opinion. For one doctor, we were able to just send Trevor’s records and scans and he was able to give an opinion without us even traveling. Wishing you clarity as to which direction to take. I know it is such a difficult time for you all.
Thank you for the information. We have decided to do the crainiotomy. Our surgeon recommends emoblization first to prevent excessive bleeding during surgery. Did your son have embolization before his crainiotomy?
We are looking at the 23rd of Dec for his crainiotomy, but we are still working on coordinating the the date with the embo. It is nice now for our family all to be on the same page. Thanks again for joining the discussion.
Alyse (Trevor's mom) said:
Hi Rachel.....we were faced with the same decision Gamma vs surgery. We were told by one surgeon that our son was inoperable because of the location and we did get other opinions as well as research, research, research to try to decide what to do. My husband was leaning toward Gamma for a short time (but I never was). For for us....after a few opinions and lots of research, surgery was what we felt was the best decision for Trevor. We did get several opinions and discussed at lenght with each doctor why they felt one way or the other. We were told pretty much the same information that Susan Troop has relayed in her replies. Whenever possible, they choose to resect the AVMs in kids; Smaller AVMs tend to be more likely to bleed; gamma although specific it is not as specific as surgery and can affect other areas. You will not see the true deficits until years into the process whereas surgery the deficit will be apparent immediately (if there is one) and rehab would be needed then. For us, one of the reasons that we decided surgery (and there were many reasons) was that if he did wake with deficits, he was at a young age where his brain had a tremendous ability to re-learn/re-wire to accomplish task. If we went with gamma then we wouldn't know what his deficit would be and his brain would be more hard wired therefore potentially harder to re-learn what he needed. We didn't like the potential risk of a bleed over time. Trevor had already bled once so there was an increase risk that he would bleed again. I know they say that a bleed can happen at anytime whether exercising or not but to me the idea that he would be actively playing sports,increasing his blood pressure dramatically was too scary that it may cause a bleed. Believe me if the various opinions did not feel that surgery was an option then we would be going down the gamma road but based upon the information we had at the time, we decided surgery. Thankfully our Trevor is AVM free and has NO deficits. Perhaps you could go for another opinion. For one doctor, we were able to just send Trevor's records and scans and he was able to give an opinion without us even traveling. Wishing you clarity as to which direction to take. I know it is such a difficult time for you all.
Rachel, I’m sure it feels good to have made a decision. It is still very stressful, but at least you have a direction, and healing in sight, and can focus your energy in that direction. It took a while for us to coordinate the IR for the embolization the day prior to surgery. They both had very different schedules for the holidays, so we got pushed to January. We will continue praying for your family. I am expectant that it will go well, especially because of location. It sounds very similar to Lindsey’s AVM. Please let me know if you have any questions. We set up a caring bridge site for Lindsey’s surgery, and found it very helpful for keeping people informed and encouraging as well. We have a link to the site on Lindsey’s page. Feel free to look at it. It helped me to explore other people’s experiences prior to her surgery.
Yes Trevor did have an embolization in May and then a couple weeks later in June he had a craniotomy. I know some patients have had the embo and craniotomy the same day but for various reason the doctors did not want to do it that way. All the doctors were there for the craniotomy and Trevor did have an angio also.
I am glad to hear that you have made a decision. I know for me I felt better when I knew what direction we were going and could focus on what the next step was. I know it is such a difficult time and I will keep you and your family in my prayers.
My son had the embo the day before the surgery, he was admitted to the Hospital the same day he had the embolization.
keeping you in my thoughts and prayers during this difficult time.
Thank you so much. They said the embo would be 48 to 72 hours before the surgery, but they’d keep him in the hopital til the surgery. We’re meeting with the embo guy on Monday. It is so weird…he is doing so good, you look at him and you think he looks like a normal healthy kid, he’s joking around, going to school, hanging out with friends, but then he could have a siezure or worse yet a bleed at any time. It’s just crazy. I feel horrible having him go through this surgery, all of the pain and the unknowns, but it’s horrible to think what could happen if we don’t do it. We’ll just keep praying and God will get us through.
Diane Faherty said:
My son had the embo the day before the surgery, he was admitted to the Hospital the same day he had the embolization. keeping you in my thoughts and prayers during this difficult time.
Thank you for the information. I have been thinking about setting up a caringbridge site. I just haven't had the time. How is your daughter doing. Are you still waiting on the bump. Does it seem to have gone down at all?
Susan Troop (Lindsey's Mom) said:
Rachel, I'm sure it feels good to have made a decision. It is still very stressful, but at least you have a direction, and healing in sight, and can focus your energy in that direction. It took a while for us to coordinate the IR for the embolization the day prior to surgery. They both had very different schedules for the holidays, so we got pushed to January. We will continue praying for your family. I am expectant that it will go well, especially because of location. It sounds very similar to Lindsey's AVM. Please let me know if you have any questions. We set up a caring bridge site for Lindsey's surgery, and found it very helpful for keeping people informed and encouraging as well. We have a link to the site on Lindsey's page. Feel free to look at it. It helped me to explore other people's experiences prior to her surgery.
Thank you. We have so many mixed emotions right now, I’m glad we have finally come to a decison on his treatment though that is one less stress to deal with.
Alyse (Trevor’s mom) said:
Yes Trevor did have an embolization in May and then a couple weeks later in June he had a craniotomy. I know some patients have had the embo and craniotomy the same day but for various reason the doctors did not want to do it that way. All the doctors were there for the craniotomy and Trevor did have an angio also. I am glad to hear that you have made a decision. I know for me I felt better when I knew what direction we were going and could focus on what the next step was. I know it is such a difficult time and I will keep you and your family in my prayers.
You’re giving your son the best possible for chance for an awesome outcome. Yes, the next week will be very difficult. Brain surgery is scary for parents, but you have to believe that all will be OK. Then in a few weeks, he will be back to hanging with friends and playing games with his friends like nothing happened. My daughter tired a little more easily after second brain surgery, but she did great, so I believe your son will, too.
Take care. Prayers for all of you for a successful week.
– Tina
Rachel Dufault said:
Thank you so much. They said the embo would be 48 to 72 hours before the surgery, but they'd keep him in the hopital til the surgery. We're meeting with the embo guy on Monday. It is so weird...he is doing so good, you look at him and you think he looks like a normal healthy kid, he's joking around, going to school, hanging out with friends, but then he could have a siezure or worse yet a bleed at any time. It's just crazy. I feel horrible having him go through this surgery, all of the pain and the unknowns, but it's horrible to think what could happen if we don't do it. We'll just keep praying and God will get us through.
Diane Faherty said:
My son had the embo the day before the surgery, he was admitted to the Hospital the same day he had the embolization. keeping you in my thoughts and prayers during this difficult time.
Thanks for asking. Yes, we are waiting for her surgeon to get back in town. She still has the bump. It doesn’t seem to be going anywhere, but it doesn’t seem to be growing either. We are basically in a holding pattern until he gets back. I’ll definitely post when we know what it is!
Rachel Dufault said:
Thank you for the information. I have been thinking about setting up a caringbridge site. I just haven’t had the time. How is your daughter doing. Are you still waiting on the bump. Does it seem to have gone down at all?
Susan Troop (Lindsey’s Mom) said:
Rachel, I’m sure it feels good to have made a decision. It is still very stressful, but at least you have a direction, and healing in sight, and can focus your energy in that direction. It took a while for us to coordinate the IR for the embolization the day prior to surgery. They both had very different schedules for the holidays, so we got pushed to January. We will continue praying for your family. I am expectant that it will go well, especially because of location. It sounds very similar to Lindsey’s AVM. Please let me know if you have any questions. We set up a caring bridge site for Lindsey’s surgery, and found it very helpful for keeping people informed and encouraging as well. We have a link to the site on Lindsey’s page. Feel free to look at it. It helped me to explore other people’s experiences prior to her surgery.
Our surgeon's nurse said that sometimes the clamps can come loose. I wonder if something like that happened and then became calcified? At least she doesn't have a temp and isn't in any pain, so hopefully that rules out any infection. I'll keep her in my prayer. Let us know what the doc says.
Susan Troop (Lindsey's Mom) said:
Thanks for asking. Yes, we are waiting for her surgeon to get back in town. She still has the bump. It doesn't seem to be going anywhere, but it doesn't seem to be growing either. We are basically in a holding pattern until he gets back. I'll definitely post when we know what it is!
Rachel Dufault said:
Thank you for the information. I have been thinking about setting up a caringbridge site. I just haven't had the time. How is your daughter doing. Are you still waiting on the bump. Does it seem to have gone down at all? Susan Troop (Lindsey's Mom) said:
Rachel, I'm sure it feels good to have made a decision. It is still very stressful, but at least you have a direction, and healing in sight, and can focus your energy in that direction. It took a while for us to coordinate the IR for the embolization the day prior to surgery. They both had very different schedules for the holidays, so we got pushed to January. We will continue praying for your family. I am expectant that it will go well, especially because of location. It sounds very similar to Lindsey's AVM. Please let me know if you have any questions. We set up a caring bridge site for Lindsey's surgery, and found it very helpful for keeping people informed and encouraging as well. We have a link to the site on Lindsey's page. Feel free to look at it. It helped me to explore other people's experiences prior to her surgery.
Hello Rachel
Our son’s have many similarities. He did not have a brain bleed and had a very similar episode. I’m glad you came to a conclusion on what to do. I know this has to be taken care of, but i still fight with the idea and my son’s surgery is Monday. You look at a healthy looking child and constantly second guess yourself with decisions. Eric had his embolization on Nov. 24th and is scheduled for his surgery on Monday Dec. 6th at John Hopkins. The anxiety is the worst. I’ll keep you posted if you’ld like. Hope all goes well with your son.
How did your son’s emolization go? Did he go home between the embolization and the surgery. I’ll be praying for him tomorrow. Let me know how his surgery goes. Where is his AVM? My son’s in in his left frontal lobe and pretty superficial, so hopefully that will make the surgery less complicated. Good luck tomorrow.
Rolf Strobel said:
Hello Rachel Our son’s have many similarities. He did not have a brain bleed and had a very similar episode. I’m glad you came to a conclusion on what to do. I know this has to be taken care of, but i still fight with the idea and my son’s surgery is Monday. You look at a healthy looking child and constantly second guess yourself with decisions. Eric had his embolization on Nov. 24th and is scheduled for his surgery on Monday Dec. 6th at John Hopkins. The anxiety is the worst. I’ll keep you posted if you’ld like. Hope all goes well with your son.