Posts by Raymond Campbell49

So, here is how things currently stand: we are going to perform a catheterization once again. They thread it through a vein in the leg straight to the heart to get high-resolution imaging; it’s really the only way to get an accurate reading on just how much thickening there actually is. We discussed the possibility of surgery about four years ago, and I recall him mentioning that those specific procedures weren't being performed here in the States. So, if surgery becomes necessary, the plan would be to head over to Italy. Before making any final calls, I am definitely going to seek out a second opinion from an outside specialist to get a clear picture of the reality of the situation. As far as the condition itself goes, it exists, but THANK GOD there aren't any symptoms—aside from taking Inderal, a beta-blocker, which keeps his heart rate from spiking during running or other strenuous activities. Regarding the financial side of things: if you want to go abroad for the operation, a medical board has to convene to determine if such a procedure is standard practice in America. If they decide it isn't, they won't cover it; if they do agree to pay, they usually dictate exactly where you have to go. Now, maybe similar things have been done for adults in the US, but honestly, why risk an operation where 😳the surgery is deemed a success, yet the patient passes away? Four years ago, the cost in Italy was around 15,000 Euros for the procedure alone, not including the hospital recovery, which lasts about 30 days. And believe me, staying in a hospital isn't cheap by the day. That is all I have for now; if you happen to come across any new information, please let me know. Thanks!

How can you say it doesn't exist? It absolutely does. Think of it this way: you have increased muscle mass on your left side, which essentially means the blood flow through that area is being restricted. Which doctor were you seeing for this? As for me, I'm currently facing a similar weight on my shoulders, having to weigh all the options regarding a surgical procedure for my son.

I’d like to open the floor to anyone here who might have some insight regarding this condition—please, feel free to weigh in. From what I understand, a procedure of this nature hasn't actually been performed here in the States; instead, people typically head over to Italy or other countries to find those specific specialists.

I have some firsthand experience dealing with this hereditary condition. My son was actually diagnosed with it when he was just two months and ten days old. Since that diagnosis, he’s been on beta-blockers to help ensure there's sufficient blood flow to his brain. Just yesterday, I accompanied him to Cleveland for his routine checkup, where Dr. Ahel suggested we should start considering other alternatives—surgery being one of them. He’s eight years old now, and honestly, facing a decision like that is incredibly heavy; it's not something you can just brush off like a minor injury.