My Wife is sleeping almost the whole day everyday Her GP says she’s deteriorating
I’ve a feeling it could be that it’s the shunt that’s maybe causing her to sleep that maybe the pressure in her VP shunt is the problem I called the Hospital and spoke to one of the Neuro Sisters about someone possibly coming to our home to do the Pressure test on her shunt . She did speak to the On Call Registrar who advised my wife must come in to the hospital. She isn’t able to go to hospital as her muscles have wasted in her lower back and therefore gets terrible back pain if she is moved .
My question therefore is Is anyone aware of this test being done at home . I know it only takes a few minutes to perform this test
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Hiya, I am so sorry your wife is so ill and you are both going through so much. I had my shunt put in in 1983 and had a valve replacement 3 years ago. I was also a nurse for 7 years in my 20's before I also started struggling.
I can well believe they would be able to check your wife's pressure at home if they measure her pressure through her valve that forms part of the pipe that leads from her brain to her peritoneum/abdominal area, this is done with a magnetic device and no needles are necessary, so it is an entirely non-invasive procedure.
My valve is on my chest below my clavicle, your wife's valve may be in a different position. When I have my pressure checked the nurse locates the valve under the skin, presses on it with her specialist magnetic device and obtains a reading, and is then able to increase/decrease pressure the pressure accordingly.
As your wife's health means she is vulnerable and more susceptible to infection and moving her causes pain they may opt to protect her by treating her at home. The Neuro Sister would be more inclined to know whether a home visit is possible. Registrars are still completing their training and may well be merely on a rotation in Neuro and not fully understanding the intricacies of a VP shunt and treatment options.
It may be worth ringing the Neuro Sister and discussing your concerns with her and putting any questions you may have to her, she would then pass the info on to the Neurosurgeon and may possibly ask if you could have a call back from your wife's Neurosurgeon.
If your wife's condition is alarming to either your GP, the Neuro Sister or the Neuro team they could still insist your wife go to the hospital for admission in order to assess and treat her properly. If she does need to go to the hospital you could ask if an ambulance could collect her and take her in as the paramedics are trained to move spinal patients and will be able to move her as safely and with as little pain as possible. Paramedics can also administer drugs to help with her pain during her transfer to the hospital.
I hope that helps, I do apologize if I have been unclear or haven't answered your questions properly when I struggle with a migraine I know I am more befuddled and unclear, or worse, despite my best intentions can sound irritable and abrupt.
Hang in there. I do wish you and your wife everything of the very best it really is not easy, please do take care of yourself too, caring can be very draining.
Please feel free to reach out anytime. Kindest regards
The valve on a VP shunt, which is adjusted with a magnetic device over or on the skin.
What I was hoping for is that they could come to our house with that Specialist magnetic device and get a reading She’s normally 2.5 the maximum.
Wonder if I could buy this device and do it myself or get one of the medical practice or community district nurses to do it I’ve seen it done a few times so have a good idea what to do
What I was hoping for is that they could come to our house with that Specialist magnetic device and get a reading She’s normally 2.5 the maximum.
Wonder if I could buy this device and do it myself or get one of the medical practice or community district nurses to do it I’ve seen it done a few times so have a good idea what to do
Whilst every situation is different, the issue of pressure settings in a shunt is one I have become aware of recently. Until two years ago, I had had 4 shunts for hydrocephalus over a period of 54 years. It stopped working? Surgery time...so the idea of one that can be tweaked without surgery sounded interesting,
At present, I am waiting for the consultant to be allowed to perform the 'turning down the gas' procedure. A frustrating wait, but the world being the way it is, hardly a surprising one.
My guess is that whilst there may be no practical reason the procedure couldn't be done outside a clinical environment, ethical and legal constraints may prevent this, or make it less likely.
My view is that whilst my symptoms are no fun, they certainly don't require immediate intervention, so I'm prepared to wait and monitor for any change myself.
Whilst it is true that the procedure is non-invasive, it is still one that requires skill and knowledge and a safe environment. I have always been prepared to accept what the experts say is necessary and how it should happen. It might put my nose out of joint, because I don't want further surgery, hospitalisation etc, but there is a reason experts are described as such and I'm prepared to let them call the shots.
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