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| New SCI For people, families, and friends with recent spinal cord injuries |
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#1 |
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Senior Member
Join Date: Dec 2003
Posts: 135
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Need advice from Wise--new TBI
Sorry for being off-topic, but I figured somebody could point me in the right direction.
A cousin of mine was given an accidental dose of insulin (September time frame--hospital admits mistake) and has sustained serious brain damage. EKG and physical response indicate very little brain activity. Her parents are being told that there is nothing more the hospital can do, and that they should seek a long term care facility. I've been encouraging them to, at the very least, seek out a true expert to evaluate the medical records, or even see the patient for a week to provide some sort of expert prognosis. My question is: Do the TBI model centers consider admitting or reviewing records for a patient in this condition (sounds like PVS, but I don't have all the information)? I don't know if the TBI centers deal exclusively with traumatic injury and GSW, etc. Or, would the parents be better off getting an opinion from a coma specialist or maybe even an expert in stroke recovery? I'm advising them to get the medical records looked at by one of the model centers. My fear is that if they commit her to a long term care facility, the staff will not recognize possible recovery signs or serious complications. Since the injury is so new, I'm strongly encouraging her parents to seek another opinion from an expert. Any thoughts, Wise? Any facility recommendations? |
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#2 |
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Senior Member
Join Date: Aug 2001
Posts: 3,988
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Espousal, I'm so sorry. As the mom of a son with TBI as well as SCI, I know how tough it must be for her parents.
I don't know of any 'model' TBI centers such as those for sci rehab; I can recommend Dr. Jonathan Fellus at Kessler Institute in East Orange, New Jersey. He's the neurologist in charge of the TBI program at Kessler, and I can't say enough good about him - very proactive, very willing to go the extra mile. Here's a link to the TBI program at Kessler; you can also search on the site for Dr. Fellus' information: Kessler TBI program _____________ Tough times don't last - tough people do. |
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#3 |
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Moderator
Join Date: Jul 2001
Location: USA
Posts: 41,520
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Where is this woman located? Local resources would be preferred to decrease costs.
Unfortunately if she is truely in a persistant vegatative state (PVS) (Rancho Coma Scale of 1-2 with no improvement) then you will probably not find a TBI program that would consider admitting her. Most have criteria for Rancho III or higher to even evaluate the patient, since no interaction or rehabilitation intervention really will be effective below that. I do think it is imperitive to determine if she is truely in this state though, as it would be tragic to miss a diagnosis like locked-in syndrome (although this is unlikely in an insulin-induced coma like this). Has she an attorney? This type of error should be pursued legally ASAP. Good long term coma care is very expensive, and if she should have any recovery, any rehabilitation will also be very expensive. If you have engaged an attorney, the attorney can advance funds to hire an expert to evaluate her. There are a number of excellent TBI expert physicians who could do such an evaluation, and most could be reached through one of the Model TBI centers. Many do take legal cases as experts (they will need a testifying expert for such a case). A good attorney who has handled a number of medical-malpractice suits involving brain damage should already have contacts (or be able to get them) for a competent expert. (KLD) |
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#4 |
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Senior Member
Join Date: Dec 2003
Posts: 135
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Marmalady and Sci-Nurse,
Thanks for the responses. The family is located in Indiana. The IN hospital paid for transfer and "treatment" of the PT to a hospital in Michigan. The family has strong ties to the area and additional family support in MI, so that made some sense. Problem is, after a couple of weeks there the MI hospital is recommending transfer to long term care. Before taking that step, I would really want somebody with serious experience to have a look at her. There is a model TBI center associated with U of M near Ann Arbor (SEMTBIS). That might be the best bet for a contact. However, for the purpose of evaluation or confirming her condition, nearly any top notch facility would do. I'm really hampered by the third hand info I get, and also by my own ignorance. I've learned a lot about SCI in the past year (wife, C6/7 incomplete ASIA C, 1 year post injury), but I'm starting from scratch on the brain injury knowledge. For instance, I hadn't heard of the Rancho Coma scale. The legal aspect is not my primary concern. The father is smart enough to pursue any legal recourse. He has spoken to a couple of attorneys, but it sounds like he's been cowed down by a state malpractice cap. The at-fault hospital has agreed to cover the care cost, at least for now. It doesn't sound like the family has thought much beyond the immediate care. We all know that long term care could range into tens of millions, depending on condition. I assume the father is smart enough to not sign away any future settlement rights. So, can I just call up one of the TBI centers and explain the situation? I contacted Craig for my wife's admittal, but I had the help of a medical social worker while she was in the ICU. Bottom line: The family can probably get the cost of an evaluation covered by the initial hospital. It's just a matter of process and how to go about it. Obviously the initial hospital is not going to bend over backwards for anything that sounds like expert witness evaluation. What I'm trying to ask is how does the family go about getting an eval done? Does it need to be handled through an attorney or can the family make contact with a model center and handle the arrangements themselves? Thanks again. |
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#5 | |
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Administrator
Join Date: Jul 2001
Location: New Brunswick, NJ, USA
Posts: 37,988
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espousal, your cousin probably is comatose and requires care not at a TBI center (which specializes in traumatic brain injury and the acute care of these conditions) but rather in a hospital that has facilities for and expertise in treatment of long-term coma. There are many resources available on internet, including
http://www.ninds.nih.gov/health_and_...s/coma_doc.htm http://comarecovery.org/ http://healthlink.mcw.edu/article/921394859.html http://www.geometry.net/detail/healt...ive_state.html Health cyclopedia > Persistent Vegetative State Linkspider UK site on persistent vegetative state http://www.montana.edu/wwwai/imsd/diabetes/coma.htm Although there are some general statistics relating to the probability of survival and recovery from deep coma, there are exceptions to almost every prediction, as the following articles suggest: http://home.vicnet.net.au/~borth/PVSPLUM.HTM http://home.vicnet.net.au/~borth/PVSILM.HTM http://www.catholicculture.org/docs/...cfm?recnum=831 http://www.rense.com/general44/vege.htm Her parents should get opinions from neurologists who are experienced in the care of people with coma. I am sure that there are neurologists in the hospital who have been contacted. However, be aware that there are deep divisions even within the neurological community concerning the meaning of awareness and responses in people with PVS. http://reason.com/links/links102303.shtml http://www.tn-elderlaw.com/prior/010910.html The AMA report on the subject takes a conservative approach that tends to side with a physician's decision and recommendation to withdraw life support. There are times when such decisions are best for the family. The decision of where to draw the line is a difficult one. Families are put into a difficult situation when there are examples of some people recovering from severe brain injury but are at the same time faced with the anguish of prolonged coma. In the case of your cousin, I assume that she was young, neurologically intact at the time that she received her overdose of insulin, and is currently comatose. Her prognosis depends on many factors. Did she have diabetes? Were there other mitigating circumstances that might influence her recovery? How much and where is brain damage present on MRI scans of her brain? What precipitated the coma (ketoacidotic, diabetic hyperosmolarity, or hypoglycemic coma)? I just did a literature search on the subject and found relatively few papers reporting persistent vegetative state from insulin induced hypoglycemic coma: Quote:
Wise. |
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