Saturday, March 23, 2013
An Appointment With Doom
Last week, we went to see Dr. Doom, who is Bob's ENT (ear, nose, throat specialist). Dr. Doom is probably one of only two doctors I totally trust. Which is rather sad to say, as Bob has 7-8 different doctors...
We went there to get a second (well, actually fourth) opinion on Botox treatments for Bob's cervical dystonia.
The opinions we've gotten so far on this are thus:
First neurologist: "Botox injected in his neck would be fatal. Do you want to kill your husband?"
Second neurologist: "Fatal? No. It won't be fatal if it's done correctly. And it will help him hold his head up!"
Third neurologist: "The Botox could leak through to his larynx and paralyze it which will cause even greater swallowing/aspiration/speaking problems."
And I wonder why I'm having problems making this decision...
So basically, I paid Dr. Doom a $35.00 co-pay just to talk to him and get his expert opinion on this matter.
Now Bob's been seeing Dr. Doom since around 2001, when it was Doom who diagnosed and successfully treated Bob's cancer. Doom is not his real name. It's the name Bob dubbed him back then, because Dr. Doom will tell it like is. He does not sugar coat things. And he will lay it all out, worst case scenario, so there won't be "any surprises".
Dr. Doom also does Botox injections. Though he does this "on the side" for cosmetic purposes.
And it's Dr. Doom who has been ordering the swallow videos, so he's familiar with Bob's dysphagia.
So I figured he'd be a good go-to guy for a fourth opinion. I figured he'd tell it to me straight.
And Dr. Doom's opinion was this: "If Bob were my brother, I'd tell him to go for it. The chance of side effects being that bad are pretty slim. The benefits certainly outweigh the risks. In my opinion, Botox is one of the safest drugs around. And even if he has a side effect, it will only be temporary and will wear off in 3 months or so. He could have those injections, Diane, and be holding his head up straight next week! And look at the pain and discomfort he's in now."
And: "The reason that first neurologist told you it could be fatal, in my opinion, is that the doctor just did not want to do the procedure."
And: "Really, Bob's swallow is so terrible, I doubt anything could make it much worse."
And: "Totally safe to do Botox on warfarin. Worse that could happen is Bob develops a hematoma on the injection site. That's sort of like getting a bump on your head. It will go away."
And: "Just make sure the insurance is going to cover it, first. For a procedure like that, the drug alone will cost around $3000."
And: "Ask them to do it to his toes too. Heck, I think it's worth a shot."
Unfortunately, Dr. Doom does not do Botox treatments for cervical dystonia. I asked, as I would be much more comfortable if he did the procedure. But he highly recommended the neurologist who would be doing the injections. He said he's known that doctor for 18 years and has, in the past, actually done Botox injections with him for patients who require Botox on their vocal cords.
So I'm leaning more and more toward the Botox. Though this is still a scary decision to make. I do plan to ask the neurologist about using Phenol instead of Botox. Dr. Doom was not familiar with Phenol as an alternative...
We see the neurologist next week.