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AVM Survivors Network

Just diagnosed


#41

hi
sorry for the late reply ,the new doctor was lovely and said that looking at the ct scan i gave him ,he thinks he could remove it but wants me to have a angio and another mri ,which cheered me up a great deal
he also said he would leave it up to me to decide as it is a massive decision and only i can make it ,just waiting for appointments to come through but its all a bit more positive than the one from st georges ,hope you are ok ,will keep you updated xx


#42

Hi @carolb01!

I am so happy to hear you had a much better appointment with your new doctor! Its good he ordered another angiogram and MRI to help with your decision. A “bit more positive” is an understatment, It was really brave of you going to seek a second opinion after they way they treated you at st georges, and it paid off! Thankyou, looking forward to hearing how things go.

On my end, ive been told there will be a letter in the post giving the date for my angiogram, which the nurse assured me will be next month. All very slow but on the positive - amitriptyline seems to be working. Only get migraines now when i’ve missed a meal or i’ve over exerted myself. Joined the gym too, only going for light excersize but still working towards some much needed weight loss (and an excuse to leave the house on good days)! Oh and i’ve started applying for grad jobs too for september 2018 which hopefully by then I’ll have completed treatment,recovered and graduated -fingers crossed- :slight_smile:

Hugs, Corrine xxx


#43

hi corrine
happy to hear that you are getting somewhere ,i know the process is slow but we can get somewhere in the end ,
this will be my first angio and i must say i am so nervous about it but its a must ,waiting for an appointment to come is taking ages but it seems everything does

glad that you are getting on with life i think it slows you down at first but after a while when you come to terms with it things seem to slowly go back to normal lolor as normal as they can get
well good luck with it all will let you know what happens
take care
carol xxx


#44

Hi Carol, I would definetly take the advice of the members telling you to get a second opinion as you never know what outcome you may get that may assist you more with your situation…In saying that seeing as you have an AVM you should be consulting someone for check ups from time to time, which doesnt appear to be the case in your situation either… God bless!


#45

Hi Carol. For some reason I stopped seeing your updates on here! I just wondered how u were getting on and if you’ve had any treatment? Sarah x


#46

Sarah,

Carol continues to have a pretty challenging time. Her latest update is here: Fluid leak after craniotomy

Best wishes both!

Richard


#47

hi sarah
thanks for asking after me thats nice ,hope you are well how are things going ?
thing haven’t gone that well had the craniotomy 8 weeks ago ,ended up staying in hospital for three and a half weeks ,he got some of the avm feeders but could not carry on due to bad swelling on the brain so stopped after 10 hours ,he wanted to go bad in and embolise followed by another op the next day ,i refused as have never felt comfortable with the embolise thing ,he was nice and told me to go with my gut feeling ,which was if i had it i wouldn’t survive it ,so he put me forward for radiation and i have my first appointment next thursday at sheffield ,although i’m having a big problem with facial swelling from a csf leak which we are waiting to see if it resolves itself at the moment the other options were to let him open my head up again or lumbar puncture and really did not fancy any of them but think i might have to as it is not getting any better
my worry is that sheffield will not want to go ahead because of the leak and the swelling
like i always say ,if it wasn’t for bad luck i wouldn’t have any and if i end up getting through all this and be avm free i will change my name by deed poll to lucky lol
anyway sorry to chew your ears of hope you are ok and things are looking up
carol xx


#48

Oh bless her. I don’t seem to get notified of emails so just saw this. I hope she’s ok x


#49

Hi Carol. I just saw ur message. No idea why I don’t get notified of emails!
I’m so sorry you’re having such a rough time. Are things getting any better? Did you manage to get to Sheffield?
I’m doing ok thanks. Just need to book in for another embolisation when I feel well enough.
I really hope things are improving for you xxxx


#50

Hi Carol

I really hope you are doing ok and that you managed to go to your appointment in Sheffield

Sarah xx


#51

hi sarah
i did manage to get to sheffield eventually thank you it has been a couple of weeks now ,only went for the pre op so not sure when it will be but hopefully not to long ,just want it over and done with now
how are you hope things are going as they should ,thank you for asking is nice to hear from someone who gets what its all about
take care
carol xx


#52

Carol,

Really happy to hear that it looks like Sheffield has agreed that gamma knife is an option for you?

I’m sorry to hear how difficult things have been post op - it sounds really traumatic. How are you doing now ? Has the swelling gone down and CSF leak resolved itself? Good that you followed your gut and what you felt comfortable with. It is easy to feel rushed into treatment that you don’t feel comfortable about. I would have also chosen the GK route.

Have you suffered any neurological deficits since apart from the swelling and CSF leak?

Im sorry I’ve been MIA for so long to not check in sooner.

Love,

Corrine


#53

hi corrine ,hope you are well ,how are things with you ,good i hope ?
still have the csf leak and swelling although the last week or so it seems to be reducing a bit hopefully
never felt comfortable with the embolising thing so happy that sheffield have agreed to do the gk ,waiting to hear from them anytime from now don’t have a clue how long i had the pre op a couple of weeks ago now ,just can’t wait for it all to be over and done with
thank you for asking after me
take care
carol x


#54

Hi Carol
I’m really glad you managed to get to Sheffield. Any more news in a date yet? Is it one lot of Gamma you need?
I’m just trying to get myself well enough to have another embolisation. I’m suffering from really bad anxiety and depression at the moment and generally very run down so trying to get myself a bit stronger first.
Please keep me posted on how you’re doing. Will be thinking of you xx


#55

Hi Carol,

I’m sorry to hear that it is improving though it must be frustrating waiting, I hope it calms down completely as soon as possible! I totally understand we all tend to have treatments we feel less and more comfortable with. I’m glad to hear that you’ve gotten your pre-op out of the way and that they have given the go ahead. I believe there shouldn’t be too long of a wait between pre-op and your procedure - I look forward to finding out when you do get a date. Awesome your getting it done at the best hospital for it too! It will be amazing to finally have it over and done with, have the swelling and leak cleared up and just get on with life leaving the GK to do it’s its job. I think it’ll all come real soon :relieved: :heart:

I’m doing alright, still have energy problems but im being reffered to an OT for that. I’m continuing to do well with adapting to my new vision and orientation! Unfortunately I’ve found out that my medic team have decided that they just want to monitor me from now on - that both GK and embolisation are not options and my neurosurgeon doesn’t want to do a craniotomy due to its location meaning 100% chance of further extensive right hand (if not all of it) vision loss.

I’m looking into seeing if I can have exact details on just how much vision loss I’d have. If it would be returning to post-embo vision loss I think I’ll be willing to take that in exchange for having this thing gone. If it’s full 100% right side vision loss then that is not such an easy thing to push for or accept to do. I think I need more detail about risks.

I’m looking into trans-venous embolisation where they glue from the venous side and balloon-plug the arterial feeder side until the glue settles. My AVM has recruited several feeders since the embolisation and the flow is apparently high (though not as high as before) and it is likely that the AVM will grow with time. Need to find out also just how likely regrowth would be and if this trans-venous embolisation is an option for me since it looks like the only potential option to eliminate my AVM without 100% chance of more vision loss but it’s very new and complicated.

So yeah… feel a bit bummed out about it but just focusing on getting opinions and on applying for jobs - finally feel well enough to move out of my parents house and work which will feel so good :muscle: :smile:

Do let me know how you get on,

Best of wishes

Corrine