Hi all,
Pls give me your advice what to do now:
My daugter of 13 years old got an AVM, in the cortical area of right occipital hemisphere. Unruptured, no seizure, only few headache. Homeland doctors one advised to do intervention (embolisation), second told to follow ARUBA - keep it as it is and do following check every 6 months. Doctors from neighbor country Singapore advised to treat by Gamma Knife with very positive diagnose: can be oblirated by 1 time treatment, no visual effect. I went to the third opinion as I got family living in Hungary.
First, Hungarrian intervention doctor advised radiosurgergy by Gamma for my daughter’s AVM. As Gamma in Hungary is not available till May, he recommended to go to Vienna.
Doctors from Vienna (a radiologist and an intervention doctor) checked my girl’s MRI and scan.They both told me: 1. It can not be treated by one time treatment 2.Even 2-3 treatments, they are not sure whether they can cure the AVM (obliration). 3. Its not an easy case plus High risk for visual efect (may lost one side of vĂsion) 4. At Vienna, they often dont advise to take treatment for children.
What should I do now? Pls help
Thank you very much for your attention and advice. I am very scare and confused now.
Hope,
Welcome to the site. I know you’ve been here a little while but welcome!
I think much of what the various doctors say is true – embolisation or gamma knife radiation may well be good treatments for the AVM but neither treatment is guaranteed, neither treatment could be said to work 100% first time. Except if your Singaporean doctor has seen the AVM, he may be more confident he could fix it first time. However, it is difficult to know whether his opinion is to be valued more than those in Vienna. Both will be making judgements and one may simply be showing you a more cautious view than the other.
It is also true that people decide to watch and wait. That may be the right thing to do. I would say that any surgery has risks associated with it and you could take the view that until the doctors tell you that the risk of any bleed from the AVM (which is really the thing we are looking to fix here) is about the same or higher than the risks in the operation, the best thing to do may be to watch and wait. If there is no immediate risk, then there is no need to rush to any kind of surgery.
Which of the doctors do you trust most? Which gave you confidence that they knew what they were talking about? We are looking for very trustworthy people here.
Does that help? Hope so!!
Best wishes,
Richard
At my last appointment I basically was interviewing my doctor. Went in with a list of questions a mile long and didn’t leave until I understood it all. Please don’t be afraid to ask questions then give yourself some time to let it all sink in.
Thank you very much, Richard. You re right, I registered to this network since the middle of March, at the time we discovered the AVM. But as a new comer and was busy to take her around - for DSA and for doctor’s opinion, I didnt post any comment nor question.
Who gave me confident they knew what they were talking about? As I knew through hospital websites and Mr. Google, the best opinion would/should be given by a team of an intervention doctor who do embolisation, an radiologist (Gamma Knife - GK) and an surgeon (open surgery) and/or a specialist (could be a head of neurosurgery or any doctor in this dept). However neither of hospitals mentioned processed that procedure. Only one doctor welcomed us, checked and gave opinion.
Who I trust the most? I trust on all of them, I think they all know the best in what they re experienced. The issue here is: to reply to my most important question “what therapy is the best for my daughter case, wait and watch; embolisation; GK; open surgery or a combination of 2-3 latter therapies?”, they have different anwers. The worst and most complicated for me is while doctors said “it is difficult to anwer and nobody can give you the exact response”. If the doctor said that, how we - without AVM cure experience, knowledge and skill - can decide?
Singaporean Doctors’ advice were based on MRI images. Austrian Dortors advised based on MRI and DSA images. They both recommended we can decide in 6-12 months.
Should I seek for the second opinion from another hospital, another doctors? If yes, can you pls. recommend one? What do you think about on line second opinion from famous American hospitals such as Boston?
Today my girl got headache. I recorded the time and the symptom in order to provide to doctors. I am really worry…
This network is so helpful, not only for the ones who got AVMs, also for parents like me. Highly appreciate the founders and all other active members, you are one among those! Thank you again, Richard!
Hope
My dear Kell,
Thank you for your advice. I listed all Qs I got based on my study and I wanted to know and asked them. If you could share yr Qs, it would be very grateful!
The most important Q, I repeated to all of them was “What is the best therapy - means the lowest risk therapy among wait and watch, embolisation, GK, open surgery or a combination - to apply to my girl’s case?” The latest answer was “This is not easy AVM and difficult to answer. Nobody can tell exactly”. It stops me on my way to take my daughter for treatment because now we got 3 different therapies advised by doctors:
- Wait and watch every 6 months as it complicated, big one, in functional area (visual effect), must take 2-3 GK and not sure about the result of GK and/or embolisation.
- Embolisation first than may add GK as it is medium.
- GK as embolisation only can do for very small AVM. And GK is lowest risk for this case. No visual effect.
1 & 3 is conflict, what should I decide now? Thank you for follow up my story and bright me! I really need help from you,Richard and others.
Hope
Hi there,
I got GK treatment done from Sheffield and to my experience I highly recommend them, GK treatments are their main speciality, and I have been told that they dont accept the cases if they dont think GK treatment can help the patient. The place is affiliated to NHS in UK but I think you can approach them privately as well. I can PM you with details if you are interested.
My treatment plan was prepared based on my symptoms and my general well being + the likely complications which may occur with each of these options and age is an important factor too.
Good luck in making this tough decision! I have a 13 yr old as well and I can fully understand what you are going through.
Dear Ky1,
I am very grateful for your help. Pls. send me the details of Sheffield.
Hope
First, take some deep breaths. I had a small AVM in my right occipital lobe. The iccipital lobe has much to do with vision. I had a hemorrhage when I was 9 in 1959. I lost all vision to the left in both eyes. I had a craniotomy, and the AVM was obliterated. I am a mom, a grandma, I was a paralegal for a long time. I think I tried harder than a lot of people. Things can turn out well. Don’t give up.
Beans
My son had severe headache and vomiting when he was 16 years old. He could not keep food in, and was laying in bed most of the time. 3 visits to the Accident & Emergency section of the hospital did not help much.
It was a month after his initial severe headache that we met up with a neurosurgeon and upon our worry that it might have some connection with meningitis that he arranged for a spinal tap. The extraction was yellowish and they suspected that he had some bleeding and arranged for a CT scan. Confirmed bleeding in the brain - diagnosed as AVM at left posterior occipital area
He was given 2 options - embolisation and surgery. We agreed to embolisation as it appeared to be less invasive form of treatment. 1 year after the first successful embolisation, a scan showed there was still blood flowing at the AVM location. A second embolization was arranged. Again after 1 year, blood was still flowing to the area.
We considered radiosurgery as the next step but when we tried to arrange for it, another neurosurgeon suggested that open surgery would be better for him as the location was accessible for open surgery. If we went for radiosurgery, the effectiveness can only be determined after 3 years. Should the radiosurgery be not successful, the last option would be open surgery. The deciding factor for his case was when we were told that the radiosurgery might not be so effective in his case as he had gone for embolization.
He had his open surgery in Jan this year (24 years old) - 8 years since his AVM bleeding. Post operation, he had difficulty to recognize words and to spell words. He would ask us on what the eqivalent English word for a Chinese word. He went for speech therapy and physiotherapy sessions and took medication to prevent fits for about 3 months.
At the last neurosurgery clinic session, they told him that he was ok and did not need to come back anymore.
The surgeons said his open surgery took more time then estimated as it became more difficult from the material that was used for the embolization.
This may be confusing to you but since you mentioned doing embolization before GK (which is a radiosurgery and the effectiveness may be affected by the material used for the embolization - which was their concern in my son’s case), I thought my son’s case can help you make a wiser decision.
Dear Mah,
Thank you for your valuable information. Understand how hard it was with your son’s treatment complications. You and he help me stronger. How is he now?
The combination between embolization and radiosurgery and/or open surgery is the recommendation from my homeland’s doctors for my daughter’s case. However, I
read one study on the efficient rate of each therapy, this combination is less efficient. Besides that, second opinion shows different choices. And now your son’ story cleared our doubt. Thus I am almost sure dont use this therapy for my girl.
Your email helps me much, Mah. Thank you again and best wishes, Hope.
Incredible, Mrs. Beans! I feel lucky to know this network and have chance to learn and to be inspired from you and other members. Since we discovered the AVM, I cried inside whenever I saw my daughter playing or having headache. After joining the network and receiving sharings from you and others, I feel better, feel stronger and understand more the role of myself in keeping family members in normal life. Highly appreciate, Mrs.Beans. Looking forward to hear more from you.
Hope
You can just call me beans. I was called beans as a nickname when I was a kid because it rhymes with my real first name.
Thank you, Beans.