tag0620
Distinguished member
- Joined
- Nov 18, 2008
- Messages
- 175
- Diagnosis
- 11/2008
- Country
- US
- State
- ut
- City
- park city
Just had our second appt with our new neuro (the last one was 6 weeks ago)
He sounds pretty certain now that this isn't als, has shown all of our images to a neurosurgeon who has agreed to see us, and has written the referral.
He says that he can't promise that the neurosurgeon will want to do the surgery..but "it's likely"..he just can't say that as it's up to the surgeon to decide.
Whatever weakness/progression the neuro was looking for in the upper body was not there and in fact Jim appeared stronger in the upper body than at the last appt.
His sensory issues are consistant with the herniated disc and myelopathy and he feels the fact that he has the spinal cord damage in the thoracic region may be compounding potentially continuing problems in the lumbar region from his back break/fusion.
He said that als just doesn't localize in the lower body and not move. All of the emg findings are only in his legs and thoracic paraspinals which are all explained by the spinal cord injuries..there was NOTHING in his cervical or bulbar regions.
IF the surgeon agrees to the surgery..it'll most likely be a very BAD one with up to three weeks in the hospital following surgery...but we told him we'd gladly take it.
He was very diplomatic when it came to his colleagues...but said that they "waffled" and stopped looking..and you don't do that with a terminal diagnosis. He also said he was impressed with our tenacity!
SO...it's not over yet (we need this surgeon to agree to surgery), but it feels like we're on the right path and don't feel like we're staring down the throat of this horrible diagnosis anymore...we just need to save his legs...I HOPE I HOPE I HOPE!
THANK YOU EVERYONE! I'm not going anywhere though..and you can be sure I'll continue to update and follow everyone!
Much love and appreciation,
Tracy
He sounds pretty certain now that this isn't als, has shown all of our images to a neurosurgeon who has agreed to see us, and has written the referral.
He says that he can't promise that the neurosurgeon will want to do the surgery..but "it's likely"..he just can't say that as it's up to the surgeon to decide.
Whatever weakness/progression the neuro was looking for in the upper body was not there and in fact Jim appeared stronger in the upper body than at the last appt.
His sensory issues are consistant with the herniated disc and myelopathy and he feels the fact that he has the spinal cord damage in the thoracic region may be compounding potentially continuing problems in the lumbar region from his back break/fusion.
He said that als just doesn't localize in the lower body and not move. All of the emg findings are only in his legs and thoracic paraspinals which are all explained by the spinal cord injuries..there was NOTHING in his cervical or bulbar regions.
IF the surgeon agrees to the surgery..it'll most likely be a very BAD one with up to three weeks in the hospital following surgery...but we told him we'd gladly take it.
He was very diplomatic when it came to his colleagues...but said that they "waffled" and stopped looking..and you don't do that with a terminal diagnosis. He also said he was impressed with our tenacity!
SO...it's not over yet (we need this surgeon to agree to surgery), but it feels like we're on the right path and don't feel like we're staring down the throat of this horrible diagnosis anymore...we just need to save his legs...I HOPE I HOPE I HOPE!
THANK YOU EVERYONE! I'm not going anywhere though..and you can be sure I'll continue to update and follow everyone!
Much love and appreciation,
Tracy