Here’s the news. My brother-in-law is now back home because the hospital where he was cannot do anything else for him.
The tumors in his brain are benign. That’s the good news. The diagnosis is intracranial cavernous hemagiomas.
The bad news is, he needs to see a neurologist. He needs to have at least the largest of the hemangiomas removed from his brain—it’s 9cm in diameter, about the size of a baseball.
Because it has been slow-growing, his brain has rerouted around this mammoth tumor, so that until about a week ago, it wasn’t apparent that anything was going wrong. Last week something—we have no idea what—changed, and suddenly he had right side weakness, periods of incoherence, and what has become evident as short-term memory loss.
Now the tumor has become something that, if he is to survive, must be fixed. There are only a few places in the country that can do the surgery required, which involves threading a catheter through a blood vessel in his leg up into his brain, breaking up the tumor, and sucking it out a bit at a time.
The process is nightmarishly risky. Unbelievably expensive.
Not having the surgery, though, is a sure thing, in the worst of all possible ways.
And he has no health insurance, though he might yet be able to get it through work, and it might yet cover this condition. That remains to be seen.
Assuming he can’t, he and his folks are left hoping that a 9cm cavernous hemangioma in the brain, along with smaller hemangiomas, in a 34-year-old patient with few neurological symptoms (so far), and a history of leukemia as a kid, would be a rare enough and tempting enough case to interest a teaching hospital into taking him on for the education he would provide its medical students.
What a turmoil. Sounds like you need to take a few days for yourself and your family and not worry about anything else. It is truly wonderful that you have found a sympathetic surgeon as well as a sympathetic hospital to donate OR, staff, meds and equipment to your brother-in-law. Sometimes miracles happen.
I just wanted to say that you, your brother-in-law, and family are in my thoughts.
My Grandma had a benign tumour a bit bigger than a golf ball that was wrapped around her brain stem. She had many of the same symptoms – slurring her words, loss of balance, personality change – and she also appeared perfectly normal until a few years before she was diagnosed. Despite having the tumour for over 20 years.
In 2005, she was operated on and they got the tumour out. There was only a 10% chance she would survive due to positioning of her tumour but she beat the odds.
It can be done. Your brother-in-law can do it. He needs his family to remain strong. I really hope this can give you even a tiny ray of hope.
Once again, I will be praying for your family.
Praying for your family.
As ever, my prayers and best wishes.
Have you talked to his county hospital? Many of them have teaching programs and offer low and no cost medical care, as well as help with the social services part of things (transportation, equipment, rehab, etc). You don’t mention where he lives (some county facilities are MUCH better than others) but that might be the first place to look. If they can’t help him they can refer him to someone who can.
I know this if frustrating. I was fortunate when I had cancer 4 years ago that I was able to have treatments and surgery locally. Both of our local oncologists are adjunct faculty at Stanford.
As was mentioned above, I would also recommend UCSF or Stanford. Both are world class teaching hospitals. As a UC employee I may be a little biased towards UCSF.
Of course the second challenge is family support once you find a treatment program. The stress of being far from family can put considerable stress on any patient, having local housing for family is a must. I know both UCSF and Stanford have outstanding family support programs.
If your brother-in-law is looking at either of these 2 options and you need help in the San Francisco or Palo Alto area please don’t hesitate to ask.
MD Anderson in Houston might be a possibility.
You and your family are in my prayers. What an awful situation.
How awfully frightening. I also have no practical help to offer, but he and all the rest of the family will be in my prayers. Please keep us posted and if there’s any other way I can be of help, let me know.
I can let my doctor know about this at Duke here in NC this Wednesday. (This doctor is part of the group that took care of Kennedy and his tumors.)
Is there an area/region that would be preferable?
I have contacted several listservs I am on that share info on a different brain problem, but we/they know just about every neuorsurgeon in the country. Could you write to me offline, in case I get a referral for you to call.
Also, try NIH. If you could find a study there, the care is great, and usually free. You might start at clinicaltrials.gov, but call around NIH, also. I missed getting my brain surgery for free in an NIH study seven years ago because the study required two problems. I had the primary problem, but not the secondary one.
And, I am sure you have thought of this, but Yahoo Groups has a lot of medical condition listservs where people share referrals and help.
What a dreadful situation! As Teri said, I have no practical help to offer, but send you all my best wishes for you and your family.
Damn the American health care system sucks. I know the NHS ain’t great shakes, but at least you dont have to worry about paying for surgery along with dealing with your illness. Things can be just tough enough without that!
I hope your brother in law’s employer comes through for him and all turns out well.
I’m afraid I have no practical help to offer, but you have my prayers and best wishes for you and all your family.
Holly, if your family’s interested, I can look into the neurology department here at UNC-Chapel Hill, or I may even be able to take a trip over to Duke about 30 minutes from here and see what I can find out there.
I know the neurology center here at UNC is great, with Dr. William Powers as the chariman. I think that even if the case isn’t tempting enough for the department itself, I might know a few people who can pull some strings.
I know the whole medical center at Duke is spectacular, period. (They may be our biggest rivals, but I can’t lie about that.) I’d be happy to take a trip over there, talk with people, find out who you need to call, etc. I’m all for anything to make this a bit easier for you–talking to people, getting pamphlets, etc. It’s unquestionably a better use of my time than Facebook.
Please don’t hesitate to email me if you’re interested in either of these. You and your family is at the front of my thoughts.
Just looked at the site: they claim to have one of the largest brain tumor centers in the nation.
The hospital I always go to for my CF is UCSF. It’s a teaching hospital in San Francisco, pretty highly rated. I think they might do the kind of thing you’re talking about because I once had to have Bronchial Artery Embolization, and that involved inserting a catheter near my groin and threading it up into my lungs where it then chemically cauterized broken blood vessels. I don’t know if they can do the kind of procedure you’re talking about, but here’s the link: http://www.ucsfhealth.org/
Oh my god. What a horrifying situation. Holly, if there’s anything I can do, or if you need someone to set up a group for donations or absolutely anything that might be helpful, please let me know. I’ll help in a heartbeat.