Hi everyone,
I’m going to be having an spinal angio at Barrow tomorrow a.m. They’ll be checking to make sure the AVM hasn’t grown back and to see how the embo in the aneurysm is holding up. Hoping like crazy they won’t need to re-embolize this time around and that I’ll get to leave the hospital after the angio.
Wish me luck!
Oh, and it’s only 110 F in Phoenix right now (4:45 p.m.) - it’s gone down 4 degrees since we got here an hour ago!
I have family in AZ and they posted a picture of the temp reading 120! OMG. Good luck Tori! I hope it is an in and out day for you. Let us know how everything went as soon as you are feeling up to it. GOOD LUCK!!!
Well, I’m still in the hospital. The angio went well, and showed no regrowth of the AVM and the aneurysm is looking good (as far as aneurysms go). But there is some concern about an artery leading to one of the malformations, so they kept me to do an MRI. Had that yesterday about 3:30 p.m., but they were having a hard time getting the images they needed due to the curvature of my spine from the scoliosis. They twisted my body into a pretzel shape and took more pictures, but the doc said this morning that they still weren’t able to get the images they want.
So, they’re going to do another MRI today and said I’ll probably be here until this evening. Hopefully that doesn’t mean another night in the hospital. But after the MRI they said I could strike out and about the hospital and visit the gardens if I want to. Yea, a foot tour!
Thanks for the well wishes Jamie - I appreciate it.
Tori,
I’m a Phoenix native so I know the torture of the summer heat!! At least you are inside and have AC!! Barrow would have been the place I ended up if i’d gotten this thing taken care of 5 years ago when it first started, so I hope they do a good job for you!! They are supposedly the best!!
Well, now I’m just sad. Dr. Spetzler came by to see me. Apparently there was some mis-communication yesterday, and the AVM has in fact grown back.
He said the embo in the aneurysm is holding up well, so that isn’t a concern. We’ll see what the next MRI shows, which, because the MRI dept. is backed up, they won’t be able to do until later tonight or in the morning.
Dr. Spetzler said that if I think my new and worsening deficits aren’t too bad that it will probably be safe to take a wait and see approach with the AVM, and if the deficits get worse they will bring me back for surgery.
Ugh! I’m so disappointed. I thought for sure there would be no way the AVM would come back. Boy, can I ever be so wrong sometimes. But I did think there had to be some reason why the deficits had become worse over the last year and half or so, but I thought it would be due to maybe the fact that the tip of the catheter had become stuck in the glue in the aneurysm and they’d had to break it off and leave it there.
Sigh… and so continues the saga of life with spinal cord AVM and aneurysm.
Tori I am sorry for the bad news . I am being sad with and for you . BUT you are so very determined , strong and worked so hard to come so far that I am also filled with hope for your moving forward again . It is always one moment , one breath , one task at a time … even with a back step , yes ?
Positive thoughts , loving prayers and hugs to you Tori .
Tori said:
Well, now I’m just sad. Dr. Spetzler came by to see me. Apparently there was some mis-communication yesterday, and the AVM has in fact grown back.
He said the embo in the aneurysm is holding up well, so that isn’t a concern. We’ll see what the next MRI shows, which, because the MRI dept. is backed up, they won’t be able to do until later tonight or in the morning.
Dr. Spetzler said that if I think my new and worsening deficits aren’t too bad that it will probably be safe to take a wait and see approach with the AVM, and if the deficits get worse they will bring me back for surgery.
Ugh! I’m so disappointed. I thought for sure there would be no way the AVM would come back. Boy, can I ever be so wrong sometimes. But I did think there had to be some reason why the deficits had become worse over the last year and half or so, but I thought it would be due to maybe the fact that the tip of the catheter had become stuck in the glue in the aneurysm and they’d had to break it off and leave it there.
Sigh… and so continues the saga of life with spinal cord AVM and aneurysm.
Thanks Marianne for the support and good vibes. I appreciate it.
We AVMers are certainly used to taking this all one moment and one day at a time, aren’t we? Many of us could probably do a lot in the way of teaching others about acceptance, patience and making lemonade!
Boredom isn’t a word that is even in my vocabulary, but I’m sure glad I brought my laptop and some I Love Lucy and Leave it to Beaver DVDs. Keeping busy while waiting for whatever is going to happen next (if anything) in a hospital is essential to not going a little bonkers. 
marianne elizondo said:
Tori I am sorry for the bad news . I am being sad with and for you . BUT you are so very determined , strong and worked so hard to come so far that I am also filled with hope for your moving forward again . It is always one moment , one breath , one task at a time … even with a back step , yes ?
Positive thoughts , loving prayers and hugs to you Tori .
Tori said:Well, now I’m just sad. Dr. Spetzler came by to see me. Apparently there was some mis-communication yesterday, and the AVM has in fact grown back.
He said the embo in the aneurysm is holding up well, so that isn’t a concern. We’ll see what the next MRI shows, which, because the MRI dept. is backed up, they won’t be able to do until later tonight or in the morning.
Dr. Spetzler said that if I think my new and worsening deficits aren’t too bad that it will probably be safe to take a wait and see approach with the AVM, and if the deficits get worse they will bring me back for surgery.
Ugh! I’m so disappointed. I thought for sure there would be no way the AVM would come back. Boy, can I ever be so wrong sometimes. But I did think there had to be some reason why the deficits had become worse over the last year and half or so, but I thought it would be due to maybe the fact that the tip of the catheter had become stuck in the glue in the aneurysm and they’d had to break it off and leave it there.
Sigh… and so continues the saga of life with spinal cord AVM and aneurysm.
Hang on Tori!
Tori said:
Thanks Marianne for the support and good vibes. I appreciate it.
We AVMers are certainly used to taking this all one moment and one day at a time, aren’t we? Many of us could probably do a lot in the way of teaching others about acceptance, patience and making lemonade!
Boredom isn’t a word that is even in my vocabulary, but I’m sure glad I brought my laptop and some I Love Lucy and Leave it to Beaver DVDs. Keeping busy while waiting for whatever is going to happen next (if anything) in a hospital is essential to not going a little bonkers.
marianne elizondo said:Tori I am sorry for the bad news . I am being sad with and for you . BUT you are so very determined , strong and worked so hard to come so far that I am also filled with hope for your moving forward again . It is always one moment , one breath , one task at a time … even with a back step , yes ?
Positive thoughts , loving prayers and hugs to you Tori .
Tori said:Well, now I’m just sad. Dr. Spetzler came by to see me. Apparently there was some mis-communication yesterday, and the AVM has in fact grown back.
He said the embo in the aneurysm is holding up well, so that isn’t a concern. We’ll see what the next MRI shows, which, because the MRI dept. is backed up, they won’t be able to do until later tonight or in the morning.
Dr. Spetzler said that if I think my new and worsening deficits aren’t too bad that it will probably be safe to take a wait and see approach with the AVM, and if the deficits get worse they will bring me back for surgery.
Ugh! I’m so disappointed. I thought for sure there would be no way the AVM would come back. Boy, can I ever be so wrong sometimes. But I did think there had to be some reason why the deficits had become worse over the last year and half or so, but I thought it would be due to maybe the fact that the tip of the catheter had become stuck in the glue in the aneurysm and they’d had to break it off and leave it there.
Sigh… and so continues the saga of life with spinal cord AVM and aneurysm.
Hi Tori,
I’m so sorry to hear about your update and can only imagine how disappointed you are.
Hang in there!
Sending best wishes and hugs,
Patti
chui hl wrote:
Hang on Tori!
chui, I posted a reply but it didn’t come out right - don’t know what I did wrong. Thank you so much! Hanging on! 
Patti wrote:
Hi Tori,
I’m so sorry to hear about your update and can only imagine how disappointed you are.
Hang in there!
Sending best wishes and hugs,
Patti
Thank you Patti, I appreciate it. Yes, I’m very disappointed. But I guess we’re all used to taking the lumps along with the good, and the people and support here help more than anyone knows.
Tori
That’s for sure, Tori. This is one of the BEST websites, with the most positive, encouraging, inspiring and pro-active patients to help lift your spirits when you’re down, or to give back to others as well!
Patti
Tori said:
chui hl wrote:
Hang on Tori!
chui, I posted a reply but it didn’t come out right - don’t know what I did wrong. Thank you so much! Hanging on!
Patti wrote:
Hi Tori,
I’m so sorry to hear about your update and can only imagine how disappointed you are.
Hang in there!
Sending best wishes and hugs,
Patti
Thank you Patti, I appreciate it. Yes, I’m very disappointed. But I guess we’re all used to taking the lumps along with the good, and the people and support here help more than anyone knows.
Tori
Hello Tori! Didn’t see any further posts from you, so I hope that means you’re in a cool place other than the hospital, and that all is well with you. I live in Texas and it’s only been in the 80’s for the last week or so. Hopefully the heat in AZ is DRY! Take care, and I 'm sending wishes for the best for you.
All the best Tori, thoughts and prayers are with you.
How are you, Tori?
Hi Vicki - I was released the afternoon of the 22nd, and we got home to Albq., NM late that night. Yay! We were so happy to be home. I have to go back to Phoenix in March (6 months) for another angio, and hopefully they’ll embolize the AVM then.
It seems like the heat just won’t go away here - it’s been in the low 90’s. Ugh! The temps are supposed to be falling starting today - it’s not quite noon and it’s only 70ºF now, so we’ll see. One can only hope!
Hope you’re cooling down in Texas, too, and I hope you’re doing well and having a great weekend. Thank you so much for the well wishes.
Lesley - thank you so much - I really appreciate it. I hope you’re well today, too.
Tori
Hi Cindy - I’m much better now, thank you. It seems like this angio was harder on me than any of the others have been, and it has taken a little longer to bounce back.
How are you doing? I hope you’re well, and hope you’re having a great weekend.
Tori
Oh, and I can’t believe I forgot to ask the various staff at the hospital if any of them had seen, or worked with Bret Michaels when he was there. Arrgghh! If they had I was going to ask if I could touch them, lol.
I’ll have to write myself a note to ask when I go back in March.
I’m well, thank you. So good to hear you are doing well and are home! (I can empathize with you on that ‘forgetting’ part. I still can not believe that the neurologists in AZ never found the reason why Bret Michaels had his bleed(s). I was hoping for a great outcome for him of course, as well as, hoping AVMs/CMs/VMs/etc. (all these vascular ‘rareties’) would be thrown into the ‘spot light’ when Bret Michaels had his, but sadly, it didn’t get the attention it needs.)
Tori,
Did you ever get an explanation or reason why/how your AVM grew back? (I’ve read there is a chance for it to come back and, in all honesty, that really scares and greatly concerns me. I’ve always been into being & living healthy long before my AVM but knowing there’s a possibility of it growing back makes me want to stay FAR, FAR away from anything that ‘promotes’ vascular growth.)
Wish you Good Luck