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Wednesday, May 15, 2013

Once again, I am The Bad Guy

Yesterday, we went to see the newest neurologist. I say "newest" because this is the third neurologist Bob has seen. The second neurologist, Dr. K., was absolutely wonderful. In fact, he was one of the best doctors I've ever met. Unfortunately, he is leaving to work for a children's hospital and so we have been referred on to Neuro Doc #3. This neurologist will be handling the Botox treatments for Bob's dystonia.

The appointment started with the nurse/assistant. She looked at Bob's neck and at his left leg (which he can no longer extend straight out) and the curled toes on his left foot. She told me these were all "muscle contractions" and the cause of it was from "being immobile". She said that "evidently" I was not getting Bob enough exercise. And that this type of symptom is often seen in nursing home patients.

Those of you who follow this blog know this is simply not true. I have done my darnest to keep Bob in physical therapy and when he doesn't have professional PT, have been exercising with him at home faithfully--until recently that is. Until this dystonia caused him to drop out of PT. I told that nurse all of this and she looked at me like she didn't believe a word I said...

Then the neurologist came in and looked at Bob and told us that Bob's toes were "too far gone" and that Bob's neck was also "probably too far gone", and that Botox would not help him. Then he said that I should have brought Bob in at the "onset" of these symptoms and I should not have waited an entire year before bringing him in. Because now, it was too late.

I told that neurologist that I did take Bob to see his "old neurologist" immediately after the onset of the symptoms and that neurologist told us the symptoms were due to "neuropathy" and that there "was nothing that could be done about it". And when I asked that neurologist about Botox, he told me that "Botox in the neck would be fatal" and that was the end of the subject.

This new neurologist tells me that the first neurologist was "100% WRONG".

This new neurologist tells me I should have told that first neurologist that he was wrong.

I should have told the neurologist he was wrong? Huh? What do I look like--a freaking doctor?

Though I didn't stop there because the neuropathy diagnosis didn't seem right to me. I asked every single other doctor/therapist that Bob has what they thought of his symptoms and was given diagnoses of everything from "brachial plexus injury" to "torticollis from a drug side effect" to an agreement of the neuropathy diagnosis, to "nerve impingement" to "scoliosis" to a posture complication from keeping Bob's head of the bed elevated to high, to a "possible side effect of his poor vision".... and I even took Bob to a podiatrist to look at his toes and was only given a bunion cushion--- and it wasn't until Bob was hospitalized in February that we met Dr. K. who came up with the "post-stroke dystonia" diagnoses and told us there were treatments out there including Botox--and that Botox would not be fatal if injected into the neck.

So, after much debate, the new neurologist has agreed to "try" the Botox in Bob's neck and also in his hamstring muscles, but will not do the toes--because they are "too far gone".

Botox is set for July 2nd. 

And Bob is being referred to a foot surgeon to be evaluated for surgery... 

We left that doctor's appointment and Bob was nearly in tears...

And once again, it's all my fault.

Jeepers.




10 comments:

oc1dean said...

Your new neurologist is an asshole and doesn't know squat. For toes I would think serial casting might be tried before surgery. That nurse/assistant doesn't know how spasticity works. So much wrong in that office and so little brains being used.

Jim Sparks said...

I know it's easier said than done, but try not to let them make you feel guilty. So many people in the medical field fall prey to the God complex. It takes a strong individual to resist it and it sounds as if the ones you describe have succumbed. No one knows more about Bob's condition than you, and no one else could have cared for him like you have.

Anonymous said...

Diane, you are not the bad guy and is not your fault. You have done everything to help Bob, and you have trust the Drs. they are the ones who keep throwing the ball to each other and making you go in circles.
Never ever aloud them to make you feel down, you are doing as much as you can.
Hugs,
Yadira

Joyce said...

Where do these idiots come from??? Nurses do not diagnosis. What the h___ did she think she was doing telling you that crap. Excuse my language. But this lack of insensitivity and brains makes me really angry. Diane, I do not know what else you could have done to seek treatment. Anyway, now that I have that off my chest, I wish you and Bob good luck. Hang in there.
Joyce

kdstentzel said...

Every time I read about one of your doctors I want to take them by the shoulders and SHAKE THEM. Seriously.

I've been lucky that Mike's doctors have all been mostly on the same page and have been VERY sensitive when we need to change something/do something better.

I tend to catch more flack about the paperwork stuff, like programs I should have applied for, benefits Mike could have, etc. Honestly, the information that gets dumped on me is enough to bring on an anxiety attack. What I wouldn't give for a program that gave all us caregivers our own personal assistants to deal with all this crap. Sigh.

J.L. Murphey said...

Diane,
Poor, misunderstood doctors . They can't accept fault because their malpractice insurance is too high. Actually they are only human and make misdiagnoses all of the time so they have to blame someone. Often it's the wife or caregiver.
We are not to blame or have to take it!

Don't accept the blame. I refuse to after ten years because I know more about what is going on with my husband than they do. So do you. You didn't accept their diagnosis or multiple diagnoses, did you? No, you kept searching and kept on treating Bob. You have no right to accept blame where no blame should be placed. It's a fabulous doctor cop out, "I wish you had brought him to me at onset."

So this doctor won't fix Bob's toes. He is sending him to a specialist for feet and toes. That's a good thing. I know you fear amputation but that's not the case. There are many treatments for spasticity, Dean mentioned a few. I agree with casting. I know if the Botox doesn't work on my ankle and toes that is my next stop...my podiatrist.

As far as Bob's neck being too far gone. That is his opinion. At least he is willing to give him the shots unlike his previous neurologist. I had severe doubts (so did my neurologist) that Botox would work on my fingers and hand, but it did. I managed a slight grip. That's progress. I'll take progress over nothing every time.

Rebecca Dutton said...

I'm so sorry this doctor and nurse made you feel guilty. Those of us who read your blog know how hard you and Bob work.

Barb Polan said...

Please do not feel guilty after how hard you and Bob have worked on his recovery. Your "new" neurologist MUST be a moron to tell someone what he/she SHOULD HAVE done; those comments reflect a complete lack of decent interpersonal skills. But, it's results you want, so as long as he's willing to step outside his little box and take the action you think he should, it might be worth it to keep him.

And yes, you are an expert at this, and the "professionals" are apparently not.

Jenn said...

You've good advice and support from your readers. I ask the Universe to help you and Bob get what you need and ask for when you ask for it. Boldly continue on dearest ones. <3

Grace Carpenter said...

I'm so sorry about what you and Bob have to go through. I'm thinking about you guys.

There was an article in the NY Times about dystonia today, and the lack of awareness of some of these conditions:
http://www.nytimes.com/2013/05/19/opinion/sunday/disease-and-the-public-eye.html?ref=opinion&_r=0