Living with the symptoms of gentamicin poisoning is a highly awkward and frustrating experience. Besides the obvious outward physical limitations, most gentamicin poisoning victims feel as if they are losing their minds. Their short term memory is diminished, they lose their executive functions, and are hardly as independent and productive as they used to be. Despite the devastating reality of gentamicin poisoning, there is help. This section is dedicated to helping readers learn more about from the practical realities of living with gentamicin poisoning.
During the course of my practice, I have interviewed or examined the medical records of over 70 victims of gentamicin poisoning. I have gone on to represent a majority of these persons, and have had an opportunity to observe firsthand how victims cope with this life-altering event. What follows is a summary of my observations on how gentamicin poisoning victims best deal with gentamicin poisoning.
Perhaps the most frustrating component of gentamicin poisoning is the difficulty encountered when trying to communicate to others how radically one's life is changed. You may not initially realize that it is normal to have memory and concentration loss, and try to mask these difficulties to others. Person who cope best are open and honest with their family and friends, and have copies of resources such as "For Relatives and Friends" printed to give them.
It is admittedly much more difficult to exercise when you can't walk in a straight line, but consistent exercise is critical to the well being of a gentamicin poisoning victim. Although it may take some getting used to, get a recumbent stationary bike. Get simple upper body exercisers made from surgical tube that can be placed in a door jam. These can be used sitting down. One good example is a product called "Fit-Stik™" which is illustrated.
In any event, regardless of how uncomfortable it may be, find creative ways of constantly exercising to maintain good body weight and strength. Persons who push themselves physically without creating dangerous situations seem to do much better than those who do not.
I have observed that many persons are given a cane to assist in ambulation. Many victims and several experts have told me that a walking stick or staff is much better, since it doesn't cause one to shift weight or balance. A cane or walker is designed to hold up weight: absent any orthopedic problem, the gentamicin poisoning victim needs assistance in balance only, not with weight bearing. A walking stick, or staff, is longer, and provides an additional visual reference for stability. It might take getting used to, but it is definitely worth the effort to obtain a staff or walking stick and try it in a number of environments. The following diagram illustrates the difference in posture and balance when using a staff as opposed to a cane. Notice also that the staff is much longer, and can reach a further distance from the person's feet for greater stability.
It is advisable to get a full ENT consult with a competent Otolaryngologist who specializes in balance disorders or with a Neuro-otologist as soon as possible after the onset of vestibulopathy. Often, treating physicians are slow to realize the permanent nature of the problem, and slow to refer for vestibular rehabilitation. The earlier that vestibular rehabilitation begins, the more likely it is to improve your quality of life. It is totally frustrating for a person to be suffering from imbalance and oscillopsia and have his or her physician, who most likely prescribed the gentamicin in the first place, try to blame the condition on everything but the gentamicin. A competent evaluation with fill vestibular testing will give you the objective information that you need to assess and act on your situation.
Persons who recognize that their memory may be impaired, and that they may not be able to process information as quickly before, and who use memory aids to compensate, seem to do better than those who do not. Carry a notebook to keep to-do lists and notes of conversations. Take notes of important conversations. Let your spouse and friends know what you are going through so that they can help you remember things. This is not to suggest that anyone would just resign themselves to their condition and give up: on the contrary, it is your responsibility to do everything possible to compensate for your loss and to live as productive a life as possible.
Unless you have the specific approval of a qualified balance disorder specialist, or unless you are one of the fortunate few who have had a significant portion of their vestibular system spared, DO NOT DRIVE A CAR (or anything else), especially in the first 6 months to a year after receiving gentamicin. It is dangerous not only to you, but to others around you.
If you believe that you have been a victim of medical malpractice, consult a qualified attorney. It is important not only to know if malpractice was involved, but also whether there was no malpractice. I have seen many cases where a person has harbored intensive ill will against their physician for years, only to find out later that there was actually no medical error, or the ototoxicity was the fault of a pharmacist or nurse that the patient had no idea was involved.