Hi! I have found this site to be an invaluable resource and think the stories and people who post here show such strength. I would really like to have some feedback on this situation involving a loved one (so please forgive me if all of the details are not as precise as they could be, I can clarify if you have questions). My loved one is only 25 years old and has Klippel-Feil (T3 to T 4 is where the problem is focused with a butterfly vertebrate) with no history of prior intervention. He has tried all of the usual physical therapy, massage therapy, and injection avenues.
In February, we went to a great neurosurgeon who told us that spinal fusion and VCR from T2 to T10 would be an option in the future (10 + years) based on MRI imaging from June, but to manage pain with a combination of injections and OTC painkillers in the mean time. He assured us there was no imminent risk of the spine collapsing or any emergency to worry about and surgery would be a choice if the pain became unbearable. From that point forward, my loved one has been very active. He is able to run regularly, take long hikes, he lost weight, and is the picture of health overall. We tried injections and they offered temporary relief, but he still would have good and bad days (mostly good though). For him, when the pain would hit, he typically would have to lie down or take painkillers. Pain-wise, this has been one of the best years for him.
One week ago, he started to have a new sensation of relentless tingling in the upper back, and a difference in sensation on each side of the back, that has not let up since. This was coupled with weakness in the legs (he could barely go up the stairs), which did stop after a few days (but his legs still feel a little weaker than normal). The Neurosurgeon's office ordered an MRI and based on that they have since recommended that he needs a Spinal Fusion with VCR from T2 to T10 ASAP. We have scheduled an appointment to ask questions, but I would like some feedback from people with experience here. This recommendation was based on the fact that the new MRI (compared with the older imaging he had seen in February) showed that the spine was stretching and had evolved too much.
My understanding is that the surgery is necessary to prevent permanent irreversible nerve damage, but when I have searched for stories and found a few, it is very uncommon to see anyone getting a fusion of this many levels without being in pretty debilitating pain. The new upper back tingling has caused some a shift in his shoulder, and has prevented him from being able to work as much, but he is still able to go on walks every day, run, etc. Is it normal to do a surgery of this magnitude, with all of the attendant risks, if your quality of life has been pretty good (or the best ever for him) for the last year?
Has anyone had such a sudden shift that required them to do a surgery this quickly after being told it was not necessary, without a major trauma / accident? I guess this could be based on the fact that the MRI the doctor saw in February was from June, but he also took X-rays at that time. Also, the actual report accompanying the MRI by the radiologist does not indicate any major change in the conditions from the prior MRI. Does this mean anything?
On one hand, I think it helps that he is 25 and very healthy, meaning he could recover, but on the other hand, I am scared because he is only 25 and doesn't have his daily activities limited that much, but I don't know if the spinal stretching or nerve damage would be something we would only see the impact of down the line.
The neurosurgeon is very confident and wants to do the surgery in a few weeks, so we don't have time to get a second opinion (and other neurosurgeons have ranged from saying it's too risk to do it to recommending the surgery when the pain becomes unbearable).
Any advice would be much appreciated from people who have had similar situations! Thank you in advance.