vester
11-01-2004, 12:44 AM
Hi all...
For those that dont know...Ok - background. Husband is 28 has segmental NF in his sacrum and left leg. We went to Mayo 6 months ago - found all this out. I BEGGED them to do an MRI of his leg (where all his pain seems to be) but they said since they found NF in his sacrum, they will just forgo it, which made me upset.
Fast forward. 6 month check up. I had to BEG three times on the phone for them to do an MRI of his leg. They finally agreed.
Turns out....HALF of his leg is a plexiform neurofibroma. We just found out last Friday.
The good news (there is little) that my husband doesnt FEEL any worse than a year ago - that the MRI's on his sacrum havent shown growth - and that he is doing well with pain because of neurontin and ultram.
The bad news - I am so upset that they didnt do an MRI 6 months ago - so that I could deal with this THEN when I dealt with the whole fact he has NF. I'm SO UPSET that this is so huge...I mean, you would GASP if you saw it on the MRI.
They cant do surgery to debulk because its basically his whole leg. Where do you start? It would cause extensive damage, cause more pain, they would probably grow back and there is no assurance they would get the ones that might turn malignant.
*deep breath*
Ok - so I know that technically he is no different than yesterday - but this knowledge - and the MRI - scared the hell out of me. I mean, it is so huge.
Now we are lucky (I guess) that its only segmental - so he wont probably get this anywhere else. But trust me - this one place is enough. Its huge.
I am so scared.
1. What if this grows bigger (which it will, we all know that) He is only 28. They can manage the pain with drugs, but my God. How terrifying. The pain.
2. The big one. Malignancy. As you all know you cant tell on an MRI if something is malignant...and he has so many. I know the statistics say 5%, but the more you have I have heard the more that rate goes up...and he has so many.
I'm terrified. and upset that they didnt do the MRI like I asked 6 months ago. Then we would have something to compare it to.
I just feel like I've been sent home on some "death watch" to wait. I feel like they are saying...well, they COULD BE malignant now, we just dont know. They could be malignant in 50 years. They could never be malignant. And so here I sit - waiting....wondering if this is the last Christmas I have with him....etc.
I know that the chance of it turning malignant are low - but if you saw this thing....it is huge. And I'm terrified. We really never thought it was that big.
I am doing better now than a week ago for sure. We are pretty sure that this has stabalized, and we have looked into going to KU Med and also going to Cleveland Clinic or MD Anderson. We will see a doctor in 4 months at KU Med for check ups and another MRI for comparison...
Thank you all for sticking by me - and supporting me.
On the flying front- I am flying tomorrow for work to Minneapolis. I have to say I'm not that scared. With everything else - it really puts things in perspective (unfortuantely) Before Iwould have been really nervous of terrorists or whatever the day before the eleciton - now I'm like....whatever. I dont care. I think I'm just numb.
Ok - well I've talked everyone ear off - but if anyone wants to track me :) I will be on Northwest from kansas city to minneapolis at 12:20pm tomorrow --
thanks again for being so supportive over these past few months with my husband and especially with what happened on the other board and what some callous people said about my situation. thank you so much again...
Vester (Annette)
For those that dont know...Ok - background. Husband is 28 has segmental NF in his sacrum and left leg. We went to Mayo 6 months ago - found all this out. I BEGGED them to do an MRI of his leg (where all his pain seems to be) but they said since they found NF in his sacrum, they will just forgo it, which made me upset.
Fast forward. 6 month check up. I had to BEG three times on the phone for them to do an MRI of his leg. They finally agreed.
Turns out....HALF of his leg is a plexiform neurofibroma. We just found out last Friday.
The good news (there is little) that my husband doesnt FEEL any worse than a year ago - that the MRI's on his sacrum havent shown growth - and that he is doing well with pain because of neurontin and ultram.
The bad news - I am so upset that they didnt do an MRI 6 months ago - so that I could deal with this THEN when I dealt with the whole fact he has NF. I'm SO UPSET that this is so huge...I mean, you would GASP if you saw it on the MRI.
They cant do surgery to debulk because its basically his whole leg. Where do you start? It would cause extensive damage, cause more pain, they would probably grow back and there is no assurance they would get the ones that might turn malignant.
*deep breath*
Ok - so I know that technically he is no different than yesterday - but this knowledge - and the MRI - scared the hell out of me. I mean, it is so huge.
Now we are lucky (I guess) that its only segmental - so he wont probably get this anywhere else. But trust me - this one place is enough. Its huge.
I am so scared.
1. What if this grows bigger (which it will, we all know that) He is only 28. They can manage the pain with drugs, but my God. How terrifying. The pain.
2. The big one. Malignancy. As you all know you cant tell on an MRI if something is malignant...and he has so many. I know the statistics say 5%, but the more you have I have heard the more that rate goes up...and he has so many.
I'm terrified. and upset that they didnt do the MRI like I asked 6 months ago. Then we would have something to compare it to.
I just feel like I've been sent home on some "death watch" to wait. I feel like they are saying...well, they COULD BE malignant now, we just dont know. They could be malignant in 50 years. They could never be malignant. And so here I sit - waiting....wondering if this is the last Christmas I have with him....etc.
I know that the chance of it turning malignant are low - but if you saw this thing....it is huge. And I'm terrified. We really never thought it was that big.
I am doing better now than a week ago for sure. We are pretty sure that this has stabalized, and we have looked into going to KU Med and also going to Cleveland Clinic or MD Anderson. We will see a doctor in 4 months at KU Med for check ups and another MRI for comparison...
Thank you all for sticking by me - and supporting me.
On the flying front- I am flying tomorrow for work to Minneapolis. I have to say I'm not that scared. With everything else - it really puts things in perspective (unfortuantely) Before Iwould have been really nervous of terrorists or whatever the day before the eleciton - now I'm like....whatever. I dont care. I think I'm just numb.
Ok - well I've talked everyone ear off - but if anyone wants to track me :) I will be on Northwest from kansas city to minneapolis at 12:20pm tomorrow --
thanks again for being so supportive over these past few months with my husband and especially with what happened on the other board and what some callous people said about my situation. thank you so much again...
Vester (Annette)