Hi,
First time ever in chat room. Dont even know if im doing this right! newly diagnosed…well since Dec 1st. Met my neurosurgeon today after weeks of following up my appt on the phone (clerical errors in sending out my appts etc.).So angry right now. 1st of all, he obviously had not read my notes beforehand and didn’t know anything about my case! He saw my scans for the 1st time during my appt. I thought he was going to set me up with treatment. Instead he has advised me to go back to my neuroradiologist and seek advise re embolization. Couldn,t the radiologist have discussed this with me during my time spent with him for my angiogram? Surgeon was no help at all with regard to advice about whether or not he would recommend surgery. Surely he could have given me some advice.Sorry to sound so negative but i could cry with frustration right now…Need advice. Im living in Ireland.
Gemma,
I’m sorry to hear you’re experiencing all of this frustration. I joined this site in November and it’s been such a help to me. If anything it’s given me an outlet and I know I’m not alone. There are people on here who genuinely care.
Also you mentioned in your post that your neuro recommended embolization… have they talked to you about any other options???
My neuro said that for me embolization isn’t an option and they’re not going to do a craniotomy because mine’s located in a very important area of my brain and if they make one wrong move, I’m history.So my best option is radiation which I’ve been researching… maybe that could be an option for you. The only downside of the radiation is that it takes between 2-3 years.
I hope this helps you in some way and I wish you the best in the future…
God bless.
Jessica
Thank you so much for replying and for your info. Im so glad im came upon this site. Felt so alone today, like i have no one who knows what to do. Know that no-one will give me defintite advice but want information so that i can make an informed decision. thanks again.
Jessica Ables said:
Gemma,
I’m sorry to hear you’re experiencing all of this frustration. I joined this site in November and it’s been such a help to me. If anything it’s given me an outlet and I know I’m not alone. There are people on here who genuinely care.
Also you mentioned in your post that your neuro recommended embolization… have they talked to you about any other options???
My neuro said that for me embolization isn’t an option and they’re not going to do a craniotomy because mine’s located in a very important area of my brain and if they make one wrong move, I’m history.So my best option is radiation which I’ve been researching… maybe that could be an option for you. The only downside of the radiation is that it takes between 2-3 years.
I hope this helps you in some way and I wish you the best in the future…
God bless.
Jessica
Gemma Broughton said:
Thank you so much for replying and for your info. Im so glad im came upon this site. Felt so alone today, like i have no one who knows what to do. Know that no-one will give me defintite advice but want information so that i can make an informed decision. thanks again.
Jessica Ables said:Gemma,
I’m sorry to hear you’re experiencing all of this frustration. I joined this site in November and it’s been such a help to me. If anything it’s given me an outlet and I know I’m not alone. There are people on here who genuinely care.
Also you mentioned in your post that your neuro recommended embolization… have they talked to you about any other options???
My neuro said that for me embolization isn’t an option and they’re not going to do a craniotomy because mine’s located in a very important area of my brain and if they make one wrong move, I’m history.So my best option is radiation which I’ve been researching… maybe that could be an option for you. The only downside of the radiation is that it takes between 2-3 years.
I hope this helps you in some way and I wish you the best in the future…
God bless.
Jessica
Hi
Sorry to hear that…I think you should look for a second opinion or another neurosurgeon…I change my first one because i wasnt happy well or even he said that he wasnt familiar with avms…now the one I had…Im really happy…God luck and take care…God bless…
Thanx for replying. So. Now i. happy im actually talking to people who know what im going through. Now if i can only figure out how to use this computer of my son’s, i no il be able to overcome this blooming diagnosis!!!
Anabel Meza said:
Hi
Sorry to hear that…I think you should look for a second opinion or another neurosurgeon…I change my first one because i wasnt happy well or even he said that he wasnt familiar with avms…now the one I had…Im really happy…God luck and take care…God bless…
Thank you. Now 11.30 pm here in Ireland. Good night and God bless.
Gemma Broughton said:
Thanx for replying. So. Now i. happy im actually talking to people who know what im going through. Now if i can only figure out how to use this computer of my son’s, i no il be able to overcome this blooming diagnosis!!!
Anabel Meza said:Hi
Sorry to hear that…I think you should look for a second opinion or another neurosurgeon…I change my first one because i wasnt happy well or even he said that he wasnt familiar with avms…now the one I had…Im really happy…God luck and take care…God bless…
Hi Gemma. I can relate with you as I’ve had simliar experiences. This whole process can sometimes be so exhausting just dealing with doctors offices and their seemingly endless delays, etc. Hang in there and don’t be afraid to be blunt and honest with them. Look out for you! Don’t be afraid to seek out another opinion as well. That proved big for me. It also helps if your neurologist and nuerosurgeon have some sort of working relationship if that is possible, if not maybe ask for the notes from your visit and share them with the other doctor.
All the best to you as we are all in this together,
Keith