I have some good news from my last post. I am able to make my appointments without worry, long story short. My problem is that I don’t think I’ll be able to get gamma knife in the future with who I want due to my terrible health insurance. I’ve seen posts online about how people have gotten treatment from Barrows, UCSF, Sheffield, Mayo, etc. Meanwhile, I am looking limited so far. The biggest hospital I’ve had access to wasn’t feeling comfortable doing the procedure for me. So I even went through a situation where I’ve had access but doctors were feeling uncomfortable. How can one go through it like that… With what morale?
At the end of the day, the doctors with the right experience will be comfortable doing it, so it is a good idea not to push getting it done locally if they’re not comfortable.
You could send your reports to Barrow et al for a relatively small charge ($100-$400 I believe) through their remote second opinion program to see that they feel they would operate with gamma knife or whether their recommendation is to leave it alone, as well. You could self-fund that, I guess, not be dependent upon your insurance.
If the international centres like those also say ‘no’ then you know your answer. If they say ‘yes’ then you’ll need to work towards getting the right coverage to get sorted.
Sorry I worded it wrong. I actually sent Barrows my scans and angiogram back in 2025 and they recommended gamma knife (but with a less than 50% success rate and with its risks). That was my 2nd opinion after UC San Diego denied me treatment and recommended a yearly check up. I’ve been wanting to get treatment since, but my insurance keeps me from doing so and it’s made all the more harder when I have to be choosy with who.
Ok, well, it gives you an answer, which is that you need to find a treatment centre that is comfortable to treat you and within your coverage.
A bunch of people have pushed docs to do things the doc has advised against and come off worse, so if it were me, I’d want to find someone I’m confident in who is speaking positively, confidently about treatment, that insurance will cover.
Are you limited to in state or something? Can you get broader cover when it comes to renewal? I’m an Englishman, so I don’t have to fight with this stuff: I’m not familiar with it.
Yes, it’s limited by state. I hate how healthcare is managed in the US overall. I deal with constant headaches, weird sensations in my head, can’t bend, can’t carry heavy things, ear pain, have to watch what I eat, and have trouble sleeping because my head starts to hurt when I lie down. And that’s not even including my neck/shoulder injury. But nope, I don’t have the luxury of getting treatment because of my insurance. My experience has been getting rejected by those who have experience due to insurance or because they don’t feel comfortable. It stresses me out having this time bomb inside of my head while it relies on a system like this. It sounds easy; to get better insurance and a doctor who is willing to treat me but that’s what I’ve been trying to do all this time to no avail. Sorry for ranting. I just feel defeated these days and see no light. And today was a bad day at work.
No, it makes sense that it is a stupid system that is too limited and it’s hard to do at the point that life is already hard.
I found that lying not flat at night but with my head propped up on quite a few pillows helped me sleep when I had similar weirdness and dizziness going on. I know what it is like and it isn’t good.
Are there any AVM studies you can go to that insurance covers? What state are you in? I’m originally from the U.S. and I’m a counselor so I’m familiar with their insurance. I know there are many factors that go into insurance coverage. I also know someone who knows all the doctors that are comfortable doing surgery in the US. What Richard is saying, please correct me if I’m wrong here, is that you have to comfortable with your surgical team. 50% is still like half likely you won’t make it after surgery from gamma knife, and half likely you will , so I don’t think communication is key with your surgical team and being limited by your insurance doesn’t change that!
I am from the UK and I am now being faced with having to discuss with my Neurosurgical team who organised my embolisation for my Dural Fistulae about 2 years ago, what to do about a change that was noticed in my MR investigations last month - a dominant vein. There are just a few problems: this clinic discharged me 8 months ago (did they miss this change or think it was no big deal?) and an ENT Consultant from another hospital organised these scans as I am in increasing pain from very loud Pulsatile Tinnitus. I have been able to raise a ‘Management of Care’ concern through the hospital Patient Advisory Liaison service and now my Neuro team are suddenly throwing out serious options like chocolate Smarties (sorry, can’t think of a better analogy! )
They are showing all the signs of being uncomfortable too. So in a different way, I get where you are coming from with trying to find a way through the confusion. It absolutely messes with your peace of mind and makes the head pain even more frightening. They are reacting instead of thinking and even though I am very hurt and angry, I am trying to focus on doing the thinking for them and work out exactly what the situation is inside my brain before I rush into more scans and treatment (worked out very badly for me last time round). I am pushing for a new referral elsewhere to a different Neurosurgical team with more brain injury expertise but have been told that it wouldn’t be called for (really?!)
If your second opinion from Barrow said that Gamma knife would only be 50% successful, is it possible that they can give a bit more explanation as to why? Would they expand upon that and suggest what the next best option would be for your case? I guess this would be my first reaction. Like you, I also have a legacy of neck and shoulder related injury and my ENT Consultant advised that this can cause further nerve related pain and distress in my head BUT this is a bit more under my control and I can do things to get help for this. Would your insurance perhaps allow you to make some progress there?
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