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Dan8490

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So this may be a bit long, I apologize. My mom is currently in a hospital on a ventilator right now and we've yet to really yet to get a diagnosis. She's been through multiple doctors over the last few years, some have said ALS or MS and some have ruled it out. So I'm hoping to get some answers or at least some advice here.

About 10 years ago, my mom tripped and fractured her left shoulder. She went to the hospital and they put it in a sling and sent her home. She had some therapy for a few months and everything seemed to be fine. Well a little while after her therapy ended, she started having some weakness in the left arm, it started in the fingers. My mom worked most of her life in an office, so it was assumed to be carpal tunnel and they did surgery to fix it. The weakness progressed to her wrist and forearm, so they also did surgery on the elbow. The same thing also began to happen with her right arm although not as severe. Eventually the weakness affected both arms from the upper arm down. At this point the doctor speculated it could be her rotator cuff and wanted to do surgery on that. My mom had enough of the it could be surgeries and went to another doctor who recommended a neurologist. My mom went to this neurologist, he did tests and said he didn't see anything and to go this research hospital in Gainesville. Well she did and they did a battery of tests and concluded it was not cancer, ALS, or MS, but there is 1001 other things it could be. They gave my mom a medication for muscle inflammation and that was it. At this point my mom pretty much gave up, she couldn't afford this medication (nearly $1000 per refill) or to go to this hospital. By 2008, her arms were really weak and had little use of them. She could move her shoulders and two fingers but that was it.

For four years my mom made it work, she just decided to live with it and the weakness pretty much stayed the same. Nothing else was ever affected just her two arms. In 2012, she slipped and fell again, this time she fractures her right hip. The way she fell sent her back/neck slamming against the wall. I mention this cause after this fall she mentions that she feels sensation in her fingers and hands again something that she hadn't felt in a while. Well she goes to the hospital and they repair her hip. When my mom mentions the sensation to her doctor, he says its a good sign cause it's probably not a muscle or nerve disease because she's regained sensation and because of the onset of her symptoms in the beginning. He gives an MRI of the neck which shows compression in the C4,C5,and C6 disks. They rule that as the cause of my mom's condition and refer her to a spinal surgeon. My mom sees the spinal surgeon and he relieves the compression and he informs us that its unclear how much strength my mom would get back,if any, but that this would at least stop it from getting worse. Now before the neck surgery, a few weeks after the hip surgery, the hospital had my mom walking around with assistance of course. They also had her walking after the spinal surgery. The doctor ordered her to receive intensive therapy on her arms and legs at a facility followed by continued therapy at home. At the facility, they refused to do therapy. Their claim was their therapist's assessment is it's unwarranted as she is a quadriplegic with a muscular disorder. Her insurance wouldn't allow her to be transferred so were stuck with arguing with a therapist who wouldn't listen. My mom remained bed ridden for six months, in that time she developed a drop foot in the right foot. She was discharged home and finally able to get the therapy that the doctor prescribed.

She was getting therapy for a few months and they were concerned about her drop foot but noted that it was getting better. Worse case scenario she would need a brace. Her other leg was fine. Things started to get bad when the OT therapist refused to do therapy on her arms cause she was more interested in waiting to see if my mom would need a wheelchair and what it would look like. This OT therapist also worked at the facility my mom was in. The leg therapy was going well until the doctor's prescription ran out and we had to get a new one. Unfortunately, we had to get it from my mom's primary this time. This doctor is the only doctor in town who makes house calls. This doctor doesn't even bother coming to the house and instead writes that my mom is quadriplegic and refuses to write a script for therapy or an assessment. At one point writing that my mom was an amputee. He was forcibly retired when they discovered he was suffering from dementia for a while. So after a few months of little to no therapy, my mom gets a new doctor who right away writes a prescription and my mom is getting therapy again. She was making some real good improvements, the drop foot wasn't as bad, and she was able to move her fingers in like a waving motion.

At the end of last year, she had to go back to the hospital yet again. This time for surgery on her stomach. While there she also had an esophageal stent put in, as she was having trouble with food getting stuck sometimes, apparently this can happen as you get older. After the stomach surgery, my mom was instructed to get breathing treatments in the ICU every two hours with a spirometer. The ICU did not do any of these treatments and my mom couldn't do them herself. These treatments are to prevent patients from getting pneumonia after surgery. The hospital discharged my mom to an acute care facility until she could be taken home. She was there for a day and then she was having some trouble breathing and was feeling sick. They sent her back to the hospital. The hospital thought it was pneumonia or bronchitis and did a bronchoscopy, my mom had an allergic reaction to the lidocaine they used and coded. She was resuscitated and intubated and has been a ventilator since. Since this point there has been numerous diagnosis. Her first pulmonologist said her diaphragm is paralyzed from her muscle disorder, she's a quadriplegic. When I informed him of the above story, he changed it to COPD. Either way he suggested taking her off the vent and putting her in hospice. The second pulmonologist said her diaphragm was not paralyzed but her lungs were damaged from the lidocaine and it will take time to recover, something that has been said by other doctors as well. She spent three months in this hospital before being transferred to an LTAC facility. There she managed to be off a vent for 16 hours and they were waiting to start nighttime weening. Unfortunately her insurance ran out and she had to be sent to another facility which is less intensive. The first hospital was a nightmare, they tried to ween her off twice, unsuccessfully by just turning the vent off. They put in a wrong size trach which dislodged and ended up causing her to code again. They also refuse to accept the diagnosis of a lidocaine reaction as being the cause of her needing the vent, instead they insist it's because she's quadriplegic and has a muscle disorder. So now because of this, it's in her records, and every new facility she goes to I have to tell the whole story. This also causes a lot of confusion since the first prognosis from each place begins with "well because she has ALS and is quadriplegic." after I tell them what happened, then there is no prognosis.

I know this was really long and thank you to anyone who reads it all. I just don't know what to think anymore. I've heard it is ALS or MS and I've heard its not. Ruling it out as being that seems to disappoint the doctors cause then there is no answer or explanation. However, the assumption and sometimes insistence of thats being it changes their attitude on the treatment. Those who are convinced that it's ALS or something, have an attitude of there is nothing we can do and we're not even going to try. I guess my question is to those who have experienced ALS or have been around something with it, does this sound like ALS? To me, it seems all unrelated and essentially is just my mom having really bad luck over the last ten years but at this point I don't know.

Any advice or thoughts are really appreciated. Thanks again to anyone who takes the time to read this.
 

Atsugi

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Dan, thanks for being so thorough. I'm not a doctor, but I know ALS fairly well. My wife was a doctor for 20 years and then died of ALS in our house. I'll try to give you answers. You might not like what I have to say.

You probably already know what ALS is, but I'll say it again to be thorough. In ALS, motor nerves in the brain are destroyed one by one, so the corresponding muscles don't get the signal to contract. Thus, the muscle stays limp and useless. Usually this starts in the hands and works its way around to the legs and trunk and neck, so the patient becomes totally paralyzed, eventually unable to take a deep voluntary breath or even speak toward the end.

Many tests are used to rule out all other possibilities, and an EMG is done to measure and characterize nerve activity. It's only ALS if nothing else fits, so everything else needs to be ruled out. There's no test for ALS.

There's no treatment for ALS, except to keep the patient as comfortable as possible until they die. Keeping a paralyzed person comfortable is a full-time labor intensive job, and involves medications, including morphine.

Many parts of your story, and the whole progression of the story, do indeed sound like ALS. But, of course, only a specialized neurologist can tell. Of course, you're right, it could just be several other things added up like bad luck.

In Orlando, I would use Dr August Joseph on Lee Road. He was thorough and professional when he diagnosed my wife. We got our second opinion (you should always have a second opinion about ALS) from Dr Kevin Boylan at the Mayo Clinic in Jacksonville. Hospice of the Comforter provided nurses to our home. (BTW, don't expect to find nurses with experience in paralysis.)

Dan, I know it makes sense to press for a diagnosis. It is terrifying to see your mom go through this, knowing that it might just get worse. It's always better to have a diagnosis. But quite frankly, medically speaking, at this point a diagnosis means little. Even in ALS, toward the end of the disease, we focus entirely on making the patient comfortable. We focus on moment-to-moment symptoms, now, not the diagnosis.

Frankly, even the doctors I named might not want to test your mom. They might think, rightly, that it makes no sense to put someone through all the discomfort of testing, when the result will be the same: a patient who needs comfort care.
 

skipper66

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I am so sorry Dan that your mother is going through all this. I will pray for you. I don't know enough about ALS to give you any answers. Really wish I could. Your story breaks my heart. Hugs, Kim
 

ECpara

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Your story was like watching an episode of House MD, without a diagnosis! Your poor mom, such bad luck. I'm like Kim, I certainly don't have any answers. But our Atsugi gave you the very best advice! Blessings to you and I pray you will find answers and that your mom finds peace from all this.
 

lgelb

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Dan,
I am sorry for all that you and your mom have lost. What I am hazy on for the "what now" question (which, as Atsugi says, is different from the "why" question) is your mom's outlook. Are you communicating with her? Does she want to try again to be weaned from the vent? Did she have meaningful quality of life before the stomach surgery? If I am understanding, she was still walking at that point.

There are protocols for determining the feasibility of/procedure for vent weaning, and most managed care networks (is she in one? or is she dual eligible or in traditional Medicare only?) would be happy with the right stimuli to case manage getting her to a facility that would do that (or back to the one that you say was on that path) for cost reasons. Does your mom have a case manager in her plan? That would be my first call, to contact or identify that person and begin to hold them accountable, while ensuring that the necessary physician orders/documentation for which that accountability exists are in place. As you know, you can't rely on any hospital staff or agency to interpret what the network or Medicare is saying or requiring.

And if the payor thinks she is in fact quadriplegic, yeah, they are going to be less interested in vent weaning. But from what you say, she's not. If she still wants to be weaned and isn't in the right place and a physician's transfer order has been refused, if necessary, call the plan medical director's office in your region -- obviously, you won't speak to that person, but make it clear to whomever takes your call that you are fully prepared to make the plan a page one headline.

Assuming she can move something below the waist on command, drag a reporter, UR/UM nurse, whoever over to her bed and watch her do so. Get the chart notes where she was off vent for 16 hours, copy them and send them everywhere. This (Woman who can walk is held hostage to ventilator in hospital bed) is not a headline anyone in the food chain wants to read.

The last decade does not sound like ALS to me, but whatever it is, the immediate issue seems like maintaining competent, compassionate care for your mom. It sounds like you now have a semi-rational pulmo and PCP to draw on. Where are they in this? There are concrete assessments for diaphragm paralysis vs. lung injury -- what has been done and charted? Are they on board with weaning? Who is her attending physician? If they don't have privileges at this facility, they should know someone who does. That person should be able to intervene with the plan via care management, again with a plan and proper documentation.

I encourage you, as Atsugi says, to focus on her present before her future, which I know you have struggled to keep pace with, and enlist the best available medical and managed care support available for her -- and you.
 

Dan8490

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Thank you all so much for taking the time to read my post and for all the kind words, prayers and advice.

Atsugi-Thank you for the referrals and advice. I'm sorry for your loss. I understand what you're saying about a diagnosis meaning very little at this point, medically speaking, and normally I would agree. The reason I'm pressing for a diagnosis is there's proof of progress. My mom can move her legs, she can move her feet, and her toes. The only issue with her legs is the drop foot she got in that rehab facility that chose to do nothing for six months. Upon returning home, that was improving. Her arms and hands were improving as well, though much slower. The spinal surgeon and neurologist believed there was a possibility my mom could recover and even the therapists had said she had made quite an improvement since the beginning. The problem is some of the doctors now since she's been on a vent, they want to dismiss her need for the vent as being part of her paralysis and therefore there is nothing they can do and it affects their attitude and how they treat her. If it's ALS or something that won't get better and comfort care was the only option, I could accept that. As horrible as it is, I know i would have no choice. What I can't accept is condemning my mom, to live the rest of her life bed ridden, when there is a real possibility she could recover, and the only obstruction is some doctors who just seem to want to take the easy answer and say she looks like a quadriplegic so there's nothing we're going to do. Which is why I'm going to contact those neurologists, hopefully she can get another EMG. If it's the test I'm thinking of, where they poke you with the needle and measure activity, she's had that done three times and each time it was apparently normal. A diagnosis or at least a new theory is more in hopes that it will change the game plan in terms of the vent weening, so they aren't always just dismissing it.

lgelb-Thank you for your kind words and advice as well. I still can communicate and she does want to keep trying. She's a fighter and her outlook is fairly good considering. Really the only problem she has with weaning is she gets really bad anxiety whenever there are new doctors or therapists, and thats more because as I said the first hospital she was at was a nightmare. Their idea of weaning is to turn off the machine until she can't breathe. She coded twice, and one day when I was there the vent stops working and starts flashing red so I run to get a nurse and she asks "what do you want me to do?"and leaves my mom there for ten minutes before getting help. So gets really nervous at first but eventually settles down, she did it at the second facility she was at and managed to make 16 hours a day without the vent. Before the stomach surgery, her quality of life was okay. She wasn't walking but was about to start again. She was getting therapy and doing well.

As for her insurance, I'll admit I don't know too much. I know she is Medicare and Medicaid. I know that it was a big battle getting her into the second facility because they didn't want to pay for her to attempt to get weened off. In fact at point they told us they wanted to send her home and didn't even want to pay for 24 hour nursing/vent care, they wanted me and my uncle. the only person who can take care of her, to get trained and quit working so she can come home. The only case manager I know of, is the one she had while at home but all she really did was just come in sometimes, see how my mom was and what supplies she might need.

Do they consider her quadriplegic, I don't know at this point. One of the major problems is that diagnosis and opinions and attitudes seem to change with every new doctor or nurse. I remember one week, Monday, a doctor comes in says he's very optimistic about getting off the vent, it's a lung injury and it will take some time. Later that day a nurse comes in tells my mom, you're never getting off the vent, get used to it. Wednesday, another doctor comes in, he says you're mom's a quadriplegic and her diaphragm is paralyzed, take her off the vent, send her to hospice, she doesn't have long. After I explain the story to him, he cracks a joke at me about my mom and leaves. The first doctor comes in, the following day and says the other guy is completely wrong that they can't even test her for diaphragm paralysis while on a vent. At the end of the week, the second doctor comes back this time saying it's from your mom's smoking, she has COPD. Then he went back to the quadriplegia diagnosis. Then there is even respiratory therapists picking what treatments they want to do based on which doctor they like. So all this stuff is going in her chart and it's all affected by their attitude and if they want to consider anything else besides paralysis and unfortunately the word quadriplegia gets bought up and seems to just be the easy answer. So I'm not really sure what her insurance company considers her anymore. As I said earlier, one doctor even tried to claim her to be an amputee.

The insurance company required her to leave the second facility that she was doing so well at and go to this third facility that is apparently less intensive than the LTAC. This is where she is at now. The only PCP and pulmo she has are the ones there, and when I talked to the pulmo, he was very optimistic. He thinks its a lung injury and she is capable of weening, it will just take some time. So I'm happy that he is willing to look deeper and actually try to help my mom. Unfortunately, she has been there since the end of February. Spent two weeks there before getting sent to the hospital with an infection and pneumonia. After a week and a half they sent her back to the facility. She stayed one day before she had to go back to the hospital with low hemoglobin and a uti. Just about a week and a half ago they discharged her back to the facility again. Apparently though at the hospital she developed pneumonia again, and she's still on antibiotics and it's been clearing up all last week. So they haven't been able to do any weening, cause of all the secretions and weening would be really stressful. Though I'm also being told, that with the combo of that esophageal stent the first hospital put it around the time of her stomach surgery and being on the vent, she's going to be constantly susceptible to pneumonia. She just finished the antibiotics the other day and they've been getting the secretions managed. So hopefully this week, they can start attempting to ween her again.
 
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