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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."

All righty.

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.


Barb Polan said...

There's your persistence again! I love it, and it's so good for Bob. Use that to fight for insurance coverage for the procedure.

Rebecca Dutton said...

Using a doctor who has experience with a procedure is the only way to go.

Anonymous said...

If you have total trust in Doctor Doom, as it sounds like you do, I wouldn't hesitate to follow his advice, including his suggestion on the neurologist to do the procedure.

As Barb said above, I love you persistence.

Hugs, Dan

Thomas E said...

My brother had botox on his neck for dystonia. It really helped him.

J.L. Murphey said...

In this case experience is critical.

On a lighter note. I had to laugh at Dr. Doom. It's funny how couples nickname their doctors and staff. For us it's 18 doctors between us. We have Dr. No Bullsh!t for his urologist because the doctor is German and often says it. We have the Piss Ant, who is my husband's physician's assistant for his cardiologist to name a few.

Hang in there with time this will all be a memory.

Anonymous said...

Hey Diane, I sympathize with your plight. With stroke there seems to be a lot of decisions that have to be made without complete information to make them. My problems are nothing like Bob's dystonia, but I do have spasticity on my affected side that is gradually getting worse. It now goes from my foot to my shoulder and is starting to creep up my neck. I've talked to my doctor about Botox and he is prepared to do it when I tell him. It's such a large affected area, though, and would require so many injections, I haven't decided to go ahead with it. Whatever you decide it will be with Bob's best interest at heart, so that means a lot. I'll keep reading to see how it turns out and hope for the best for both of you.