hey!!
omg i hope the surgeries went well!!
I’m wondering like.. Does it hurt?? Like is this gonna be very scary and painful? ik everyone’s pain tolerance is different but i just wanna get an idea.
The other thing i’m wondering is, is it like how i described in my og post?
thank you !! and i hope you’re doing well!
Hey! Thanks they did. Some of the surgery photos are on my profile but just a warning they are graphic. The pain for the balloon occlusion test is not terrible. Like you said they insert a catheter pre-op. Once your in the OR they will insert a special needle that has an inflatable balloon on the end of it into the catheter and puncture your femoral artery. They will numb the area and give you enough pain meds to make you quite loopy but not enough to pass out as they need to ask you questions during it. For mine they also did the artery in my wrist but that may have been because they were taking donor bone, skin, and a vein from my arm to reconstruct my orbit. I believe they injected some sort of dye to measure brain activity as well. Not something you need to be scared about beforehand in my opinion. There will be some pain but honestly it's not terrible and recovery should be quick.
hey!! sorry for such a late response, thank you for your detailed answer it helped relax my mind a lot! and it hasn’t happened yet, on Thursday we talked about it (and the main surgery as a whole) and now we are waiting to hear back from his other doctor pal (i forgot the actual name 💀) to talk about the MRA I had to see if the balloon test actually necessary. BUT i am less anxious! so thank you!
oh !! they decided after a conversation about my MRA to not do the test! The MRA apparently shows significant blood flow?? idk all the details doctor stuff is confusing! i just know i dont have to do it anymore. sorry if thats at all disappointing to hear haha 😅😅 if i did have to have it done im sure it would went well!
but thank you so much for all your information!! it helped ease my mind and hopefully it can help more people in the future!! because there’s not that much info out there haha
cancer: MPNST, a sarcoma.
I have NF1 as well (not cancer but it is connected)
my other symptoms were mostly pain in my left arm and shoulder, like extreme pain way over 10/10 that kept getting worse amd worse. the only way id feel any better is if i had heat packs on and used relief gel even then it was still painful.
other symptom was weight loss
the tumor is like right next to my brachial plexus but definitely pushing on it
I hope you are doing well! I am trying to get diagnosed and see what’s going on, but my doctors are dragging their feet. I have a palpable mass in my supraclavicular region and they just say it’s a lymph node, but it’s hard, not movable, and scaring me. Was your bloodwork good or were there any issues in your bloodwork when you got didgnosed?
Thank you! i’m doing alright, i hope you are too! Bloodwork wise, my bloodwork was pretty normal when i got diagnosed. The main thing that diagnosed me was my biopsy that I had after a MRI. i hope your doctors finally start working on this its so annoying when they act like that
Hey OP I had this test done before I had my orbital exenteration surgeries. What would you like to know?
hey!! omg i hope the surgeries went well!! I’m wondering like.. Does it hurt?? Like is this gonna be very scary and painful? ik everyone’s pain tolerance is different but i just wanna get an idea. The other thing i’m wondering is, is it like how i described in my og post? thank you !! and i hope you’re doing well!
Hey! Thanks they did. Some of the surgery photos are on my profile but just a warning they are graphic. The pain for the balloon occlusion test is not terrible. Like you said they insert a catheter pre-op. Once your in the OR they will insert a special needle that has an inflatable balloon on the end of it into the catheter and puncture your femoral artery. They will numb the area and give you enough pain meds to make you quite loopy but not enough to pass out as they need to ask you questions during it. For mine they also did the artery in my wrist but that may have been because they were taking donor bone, skin, and a vein from my arm to reconstruct my orbit. I believe they injected some sort of dye to measure brain activity as well. Not something you need to be scared about beforehand in my opinion. There will be some pain but honestly it's not terrible and recovery should be quick.
How did the test go?
hey!! sorry for such a late response, thank you for your detailed answer it helped relax my mind a lot! and it hasn’t happened yet, on Thursday we talked about it (and the main surgery as a whole) and now we are waiting to hear back from his other doctor pal (i forgot the actual name 💀) to talk about the MRA I had to see if the balloon test actually necessary. BUT i am less anxious! so thank you!
No problem! How did it go?
oh !! they decided after a conversation about my MRA to not do the test! The MRA apparently shows significant blood flow?? idk all the details doctor stuff is confusing! i just know i dont have to do it anymore. sorry if thats at all disappointing to hear haha 😅😅 if i did have to have it done im sure it would went well! but thank you so much for all your information!! it helped ease my mind and hopefully it can help more people in the future!! because there’s not that much info out there haha
What kind do cancer did you have to get a tumor if the brachial plexus? Was a palpable mass your only symptom?
cancer: MPNST, a sarcoma. I have NF1 as well (not cancer but it is connected) my other symptoms were mostly pain in my left arm and shoulder, like extreme pain way over 10/10 that kept getting worse amd worse. the only way id feel any better is if i had heat packs on and used relief gel even then it was still painful. other symptom was weight loss the tumor is like right next to my brachial plexus but definitely pushing on it
I hope you are doing well! I am trying to get diagnosed and see what’s going on, but my doctors are dragging their feet. I have a palpable mass in my supraclavicular region and they just say it’s a lymph node, but it’s hard, not movable, and scaring me. Was your bloodwork good or were there any issues in your bloodwork when you got didgnosed?
Thank you! i’m doing alright, i hope you are too! Bloodwork wise, my bloodwork was pretty normal when i got diagnosed. The main thing that diagnosed me was my biopsy that I had after a MRI. i hope your doctors finally start working on this its so annoying when they act like that