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Wednesday, February 27, 2013

Finally, A Diagnosis That Makes Sense

Bob's neck/head still stuck in this position....
When Bob was hospitalized, I met Dr. K., a neurologist, who had been sent to see Bob by the vascular surgeon. Dr. K. is  new in town and I had never met him before. We talked about the stroke and he asked me about Bob's neck problem.

Those of you who follow this blog know that Bob's neck suddenly tilted and became sort of "stuck" on his shoulder last spring. Immediately, I had taken him see his neurologist who told us that, unfortunately, the CIDP (chronic inflammatory demyelinating polyneuropathy) had become active again and there was nothing we could do about it except get a neck brace and do PT, i.e. neck stretching exercises.

I never did fully accept this doctor's diagnosis. As it didn't sense to me. It is true that when Bob had full blown CIDP, he could not hold his head up. Back then, his neck muscles were weak and his head dropped forward. He often wore a neck brace. But this is different. This is like his neck is "stuck" on his shoulder...  His muscles are tight and his head is tilted to the side. And wearing a neck brace is now too painful. Also, since the CIDP disappeared post-stroke, I have not seen any other evidence of this dread disease. There has been no "nerve tingling" pain or weak muscles on his unaffected side, which he had pre-stroke. In fact, his left arm is now very strong. Stronger than it ever was. And then there's this problem with Bob's toes on his unaffected side. Which have been curling inward and making it horribly difficult to practice walking. And the neurologist said that, too, was from CIDP. But Bob certainly didn't have a problem with his toes pre-stroke.
Bob's toes 

This is not the first time I've disagreed with Bob's neurologist. After the CIDP vanished, post-stroke, I did some reading about this phenomena and found that CIDP does often go into remission, and does sometimes completely disappear. No one knows why this happens but it does happen. Bob's neurologist and I argued about this. He told me that, in so many words, I was nuts. That CIDP will only become "quiet" but never totally go into remission and certainly it does not ever completely disappear. And Bob will have CIDP for the "rest of his life".

Since then, Bob has gotten a variety of different diagnoses on his neck problem. Everything from it's all my fault for keeping the head of his bed elevated too high at night to a brachial plexus injury. To the onset of scoliosis to a side effect from Lyrica. None of these, however, explained what's happening with Bob's toes. Also, nothing I have done, from neck stretching exercises to lowering the bed and repositioning him at night to taking him off Lyrica has seemed to help.

Then in walks a new neurologist, Dr. K. Who tells me that this neck/toe problem is most definitely not from CIDP.  That CIDP would cause the neck muscles to weaken, and Bob's muscles are not weak, but tight. He also says the magic words: CIDP does sometimes just go away and not come back.

At the hospital, Dr. K. gave me his business card. He told me that he'd like to look into Bob's case, do some tests and consult with another neurologist on his team.

We went to see Dr. K. on Monday. We met with both Dr. K. and another doctor on his team. The consensus of both neuro doctors is that Bob's neck and toe problem are both the result of "dystonia".  Dystonia happens when a certain portion of the brain is damaged from a stroke or other brain injury. Afterwards, that area of the brain attempts to heal itself and somehow, in the healing process, the "wires get crossed" and that's when muscles spasm and contract and "get stuck".

And that explains why these symptoms didn't show up until a year or more post-stroke.

Bad news is there is no known cure for dystonia.

Good news is there is treatment.

The best and usual treatment for dystonia is botox injections in the affected muscles followed by physical therapy. Botox is said to paralyze the tightened muscles, thus loosening them up. The problem with botox injections in the neck is that they have been known to also paralyze the larnyx. Doctors said there was about a 20% chance of this happening in the "average" population and of course Bob is nowhere near "average".  If this happened, it would exacerbate Bob's swallowing problems and make him even higher risk of aspiration. He may, in fact, choke on his own saliva. It would also make it even harder for him to speak. Then, because of the warfarin issue, a "hematoma" could form at the injection site.  Both doctors told me to "think about it", weigh the pro's and con's, risks vs. benefits, as Botox is the best treatment available and usually works and any bad side effects would disappear in 3 months or so. But I don't know, all of this sounds risky and scary to me.... so I'm not sure if this is the way to go.

Bob's regular neurologist had previously told me that botox to the neck could be "fatal" to someone on warfarin and so I asked these new doctors what they thought, but they said it would not be "fatal" but might cause a hematoma which would "uncomfortable" and the biggest issue is the swallowing concerns....

So I am really not sure what to do. Lord, I hate making decisions like this.

There was also talk about two different medications we could try. One a very slow acting oral medication that "might" help. The other being some kind of "intrathecal" medicine--which the doctors want to do some more research on, i.e. see if it would be safe in Bob's case.

Right now, the thought was not to do anything drastic until Bob completely recovers from lung pleurisy.

We did leave with a prescription for Zanaflex, a stronger muscle relaxant than the Baclofen that Bob has been taking.  I am supposed to start him on a very low dose and see how he responds before increasing it.

We see Dr. K. again in a month.

Oh, and I asked Dr. K., before we left, "How would we know if the CIDP had returned?" And he said, the first sign would be overall muscle weakness and pain.

I tell you, my Bob has one darn strong left arm and hand. So I really doubt the CIDP has returned. And I am thinking that we finally found a doctor who actually knows what he's talking about....


J.L. Murphey said...

Happy you found a reasonable explanation for Bob's neck. It makes sense to me.

I am on a combination of zannaflex, baclofen and valium for my muscular tightening. A word of warning about can drop or raise his blood pressure, so keep a watch on it. I also do the Botox injections. You'd think I would have muscle spasms with all of that in my system, but still it is an issue.

Have you discussed Phenol with your neurologist? It might not affect his larynx so bad.

Diane said...

Thanks Jo, for the info on Phenol. I just googled it and see if was used before Botox for dystonia. I will definitely ask about it.

Rebecca Dutton said...

When a physician starts descibing the symptoms I actually have I always feel reassured.

Anonymous said...

Dr K sounds like a winner for you and Bob. I believe it's best to take his suggestions slow and easy for the treatment of the dystonia. Use what is available that has the lowest risk, and move on from there, with a lot of research involved too.

Great picture of Bob!!

Hugs, Dan

GirlWithTheCane said...

My friend Pamela writes a blog on dystonia. I don't know that it's the same type that Bob has, but if nothing else maybe her links will be useful...

Glad that you're finally getting some answers.