We had a meeting with Katies nuerosurgeon yesterday. The first five minutes of the appointment went well, he was very happy with her progress in terms of getting her movement back, he didnt think that much more would return and that from now we would only see slight improvements. But overall he was happy, and arranged an appointment to see her again in 18months time and at that time they would review her medication and look to see if she could start coming off it, great news. Then he asked “does anyone have any questions” and i opened my big mouth and asked about the AVM at the back of her head. The response we got was worrying, he could not remember the avm at the back of her head. We have been under the impression since the surgery that it had been embolized at the same time as the one she had removed, and that it was all nearly over this is not the case.
So, he brought up all her MRI scans and angiograms on screen, and then his face changed, yes there was an avm at the back, but wait there is something else. Before we knew it he was on the phone, 3 doctors came racing in, all of them huddled infront of this computer screen, mumbling all the medical jargon that of course we dont really understand, i kept hearing words like “feeders” and just thought “crap”.
So heres the score, theres a venous malformation also at the back of her head, we have been told not to worry about that one, that theres not a real possibilty of it bleeding. But the AVM needs obliterating. They neglected to tell us from the beginning the exact location of the AVM until now, apparantly it is extremely close to the area that controls your sight. So again, Katie has been given three options, Surgery but she could go blind, embolization but she could go blind, and radiation but she could go blind.
Unfortunately, according to these three doctors the risks with each are significant because of the location of the AVM and there isnt really a less risk option in terms of the blindness thing, obviously a craniotomy comes with extra risks.
We are all devastated.
Wow… That’s awful. How could the neuro have missed this? Obviously someone had mentioned it to you in the past, was it a different doctor, or did this neuro simply “forget” that it was there?
Well he knew it was there, we just had to remind him, nope it was the same guy…were all pissed off as well as upset. Feeling extremely lost and have hundreds of questions going through my head. Im beginning to wonder if the presence of her AVM’s are what caused her spina bifida…
My sister had, had 30 operations by the time she was 5, and has had probably another 30 by now, im wondering how much more bad news she can possibly take. Dont know how she does it.
Hi Helen,
Words cannot express how awful I feel your and Katie’s experience was. I don’t know if another doctor will tell you anything different, but I think it’s worth getting a second opinion.
Best wishes to both of you.
Debbie
Helen,
I have my AVM in pons~brain stem, but really bad location. My doctor also told me I may go blind with embolization, but I need my AVM fixed, so I will take embolization on 23rd. My doctor will form a special team for me, the nerve doctor(I forgot his position) will monitor my optic nerves & muscles by using very very fine needles to poke in my eyes, so if there is any pressure/complications on my optic nerves or muscles during an embolization, they will stop performing any further procedure. I cannot tell you the result yet, since it is scheduled on 23rd, but I will Let you know when I come back. Please keep searching more opinions with different doctors.
helen,
i am so sorry…this news must be breaking the hearts of you all…i cant believe this wasnt discussed with you guys earlier…as far as continued progress in katies recovery dont lisen…katie will continue to improve it has only been a year since her op…i am now 20 months post surgery and still seeing improvements…although the improvements tend to slow down …improvements are still always happening…thinking of you guys…have you, katie and your family in my prayers xxxx
Helen, you should take Katie to a different neurosurgeon’s office for another opinion. Your family is in my prayers.
Hi!
Im sorry, about what you guys are going througt…I had a craniotomy done on 04/11/09 and we were in the believed (md) that everything was removed (avm)…I was schedule for angiogram done and results were that I still have tiny litlee, veins (avm) that there were reforming again in dangerous spots. Im waiting for radiation I had an appoitment on 12/3/09.
It is hard to believed what is happen…We have to have hope…
The best wishes to you guys…
Hey guys, katies been given muscle relaxants to try and help her regain movement in her hand, hopefully that will help, it seems my suspiscions were correct, I asked wether it was possible that the AVMS could have had something to do with her spina bifida, it seems they think there must be a link but they arent sure what yet. I asked her rehab nuerologist about it, and lucky my mam teaches his son so hes got no way of getting away from us! haha, hes going to get her notes from when she was younger and look into things so hopefully all our un answered questions will start disappearing!. My mam has asked katies surgeon to give her some time to think about things and mentally recover from the last surgery…it has only been 6 month since her craniotomy and we think she deserves a break. They are writing to sheffield to get an opinion from them about the radiation treatment, but they seem to think that sheffield wont take her as a patient…but at least it buys her a little time.
So onto the next hurdle, we have to meet with her Pulmonary AVM surgeon next week, hopefully no more bad news!!!
Also, i really think that there must be some other reason why katie is getting these avms, i mean to have them in her lungs and her brain, and to also have venous malformations?, everything thats happened to her CANT just be bad luck, its just not right, if anyone has heard of anything else that causes AVMs other than HHT please let me know, we already know that katie doesnt have that, but if theres something else that could cause them i would be interested to hear about it.