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Topic Doctors off the wall with treatment. Go to previous topic Go to next topic Go to higher level

By Knoosy On 2013.01.11 14:04
My friend just came back from the hospital after constipation issues-apparently a common occurrence in PWP.
He has a little back pain, occasional leaning and was diagnosed with degenerative scoliosis. His doctor who is either off the wall or has a brain that computes at light speed and knows something the rest of us don't know, concluded and announced that the scoliosis is the reason for his constipation and that he needed surgery for that right away. I saw the scoliosis and as a physical therapist I can say that it is still minor and surgery is not needed at this point. In order to cause constipation the scoliosis must be very advanced. Constipation from scoliosis is rare.
The doctor's additional reasoning for the immediate back surgery is that since back surgery can't be done after DBS, which I somehow doubt, the back surgery has to be done as soon as yesterday followed by DBS. In this doctor's perfect imaginary world, this patient will heal from back surgery in 4 months instead of 6 even tho he's 70 and has PD in such a stage that he is frozen off a lot more than on. The pills working less and less. How do they figure will he be able to do physical rehabilitation therapy and recover at this assumed speed when he can't exercise? I just see further and scary degeneration down the line with this approach. Go figure, as I said this one may just be off the wall. That's why I'm scheduling a second opinion.

Next - the same doctor also upped his sinemet from 2x 25/100 pills 7 times a day to 9 times two pills. Since there are only 24 hours in a day, he is supposed to take one dose at bedtime 11pm, one at 2am and one at 5am. Excuse me, but when is he supposed to sleep? There can't ever be more than 3 uninterrupted hrs of sleep. That can phuque any person up. And, how is he supposed to do that? With an alarm clock set for 2am and then having to set it again for 5am? The doctor knows that my friend doesn't have a 24 hr caregiver and a person waking you up at those times would become hated in a short period of time I imagine...There was just a nurse at my friend's house who said that she has never seen a PWP take so much sinemet. Have you? He was also given a flu shot and pneumonia shot at the hospital since it was convenient for them while he was there.
That's not all: The following drugs were added by said doctor together with the existing pill schedule to total this:

Sinemet 2 x 25/100 9 x day
Comptan (Entecapone) 8 x day
Donepezil 1 x day
Seroquel 1 x day
Clonepezil 1 x day
Mirapex .5mg 3 x day
Miralax 1 x day
Docusate for constipation 1 x day
Two different painkillers, I forgot the name, BTW he has very minor pain
Vit B
Vit D
Something rectal for hemorrhoids

With all these prescription drugs, we could open a black market selling pills to finance a 24 hour caregiver to administer the meds around the clock. Just a bad joke. LOL
My friend displays confusion since he's back from the hospital. I wonder if the newly prescribed drug cocktail has something to do with it.
Does the above seem like overkill to you? thanks.

By LOHENGR1N On 2013.01.11 15:31
Yes the sinemet is a pretty high dose, conventional wisdom now is about 800 mg total a day is therapudic upper end (however many here take more myself included) pain killers are a big question as a rule the stronger the pain killer the the more adverse effect it has on the Parkinson's Disease (makes it worse). Is this doctor a neurologist? I doesn't sound like he knows what he's doing and isn't going to listen to anyone else either. Get Him to His regular neurologist as quick as you can because some of those drugs cannot be cut cold turkey and he will have to withdraw slowly from them, so the sooner he gets to someone who knows him and the disease the better off he will be. Good luck.

By Knoosy On 2013.01.11 16:07
This doctor is his main neurologist. They work as a team together with the surgeons and psychiatrist. The neuro makes all the decisions. The new meds such as painkillers and seroquel were just ordered at the pharmacy. I'm reluctant to have him start those before we get a second opinion because of potential withdrawal symptoms as you suggested. We may have to switch doctors...again.

By lurkingforacure On 2013.01.11 20:06
Do it, this is scary. Serequel can have horrible side effects, they put my mom on it and after watching her for three days and nights I withdrew my authorization for them to give her that drug and they had to discontinue it. Don't buy the "it can take two weeks for the drug to start working" BS, either. You sound smart and capable of doing the research needed to help your friend, he is lucky you are helping him:)

We ran away from a neuro who wanted to radically change our med regime, we told him we were not comfortable with all the new changes and new drugs he wanted to add and he still insisted on writing scripts for it all anyway. We never filled them and never went back. Thank God, too.

I hate to be cynical, but it sounds like these guys are trying to get in a very lucrative back surgery in before it's too late to do it. Perhaps same with the DBS. I have never heard of such a rush for back surgery before, and would be very, very careful. Insist on seeing his xrays, MRIs, scans, etc., that purportedly show the scoliosis and have him show you on them, physically, how the scoliosis is causing the constipation as he says....ask him to back up what he says with data, be it your friend's lab work, xray, CT scan, etc. As they say, "trust, but verify"....if he can't, and a second opinion doesn't support his recommendation, there's your answer. Good luck.

By Knoosy On 2013.01.11 21:11
Thanks Lurking. Can I get in trouble for not giving him the Seroquel even though the doctors ordered it? It could be the same issue that we discussed before that they could turn against me with an investigation or accusations of harming the patient's welfare by interfering with their treatment plan. I'm neither his wife nor his family and his family doesn't want to get involved.

Maybe my friend has to tell them that he can't take the seroquel. They prescribed it because they classify him as borderline manic depressive. He's just a bit eccentric and I like that in people. He's the creative type and the doctors are trying to make him docile, "stabilize his mood" as they call it. He seems very subdued since they started him on seroquel and the clonozepil two days ago at the hospital. He tells me he feels foggy.
From the viewpoint of holistic therapy which I practice and study for years, it appears to me once again that conventional medicine only tries to suppress and control symptoms instead of looking for underlying causes and complex human mental/physical/emotional responses to those. It can be blocked emotions or trauma repressed in the subconscious that causes a fight and flight freezing effect and to counter that a natural attempt to liberate oneself from anxiety by being expressive, silly and creative. He may have a mental/emotional imbalance with deep seated issues, but that never gets healed by medicating people and turning them into zombies.

Thank you for all the tips. I'm not intimidated by his doctors but I know they won't like me very much after I ask them all these questions and demand explanations. I feel that behind their air of authority and all their physician titles and degrees, there is quite a load of insecurity especially when they're being questioned. The prescription and surgery crazed one seems to be lingering at a boiling point and I can see that this doc will be flipping out soon, no later than when I start asking for the x-rays and MRI's...LOL got to keep a sense of humor. I plan on staying calm when that happens.
I know this is doing the right thing. I won't let them screw up my friend.

By lurkingforacure On 2013.01.11 22:16
Do you have his medical POA? If so, you can make medical decisions for him if he can't. Not taking a drug a doc prescribes, or not even filling the script he writes (tons of people do this) is not the same as taking someone out of a hospital before the attending physician says it is OK, I don't think. I had my mom's POA and told them to discontinue seroquel and they did, and no one said anything about filing a report or having me investigated for that. I did this with several other drugs they were "trying" on her, by the way.

You probably know already that senior brains/bodies and drugs are different than that same drug on, say, a 30-year old. I've posted about this before, you may want to search the forum for this. Effects, good and bad, can be magnified. Drugs do not clear a senior's brain and body as fast as they do a younger person, and drug companies hardly ever test drugs on seniors to see if the dosage and dosing schedule might should be different. The metabolism of a senior is slower, often much more so...and many seniors are quite thin which could affect drug effects as well. Drugs can build up in the senior's brain and body and instead of reducing the drugs and increasing the time between doses, most staff see the horrific side effects (caused by the overdose building in the senior system) and recommend still more drugs! I'm not a doc, not even in the medical profession, so I don't know stats but this is what I learned dealing with my mom's situation. I remember reading a lot about negative side effects with Seroquel when I was going through this. But as some here have noted, Seroquel has really helped their loved one. Everyone is so different.

I think I would have your friend tell them he can't take the Seroquel if he doesn't want to take it...heck, he can even tell them he doesn't WANT to take it because he doesn't like how it makes him feel. He doesn't have to explain anything, really. I think it would be better coming from him directly, as the patient, but if he can't stand up for what he wants, that's what the medical POA is for.

I'm hoping the second opinion will help you all decide what's best for him. Have you all thought of a different bed, maybe one with more support, or perhaps back stretching exercises? I wonder if any of those things might help?

By Knoosy On 2013.01.12 00:15
I have the health care POA. It may be best that he tells them if he doesn't want to take the drug. He is nowhere near psychotic, very clear most of the time, just a bit up and down which is common with PD. I will also try to do more back stretching and strengthening exercises with him. It's difficult because he doesn't like exercising and gets tired of it fast but knowing that surgery is the other option, he may start working with me. We'll see. Maybe we'll find a chiropractor but first we'll see another neurologist and see what he says. Thank you for all your great advice. Will keep y'all posted.

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