Sacral nerve stimulation (test phase) - Frequently asked questions

When you wake up and the level of stimulation

After you wake up, the test stimulator box will be attached. When the implant is switched on, you will feel a tapping sensation in the genital or rectal area. There are two dials on the top of the stimulator. One will be taped over as you do not need to change the settings on this. The other has numbers on it which you will be able to adjust. This level will be adjusted whilst you are awake.

You can either leave the stimulator at this level so that you can slightly feel it, or set the stimulator just below this level so that you cannot feel it. This depends on what is more comfortable for you.

If you have it slightly below then turn the dial up slightly each morning to ensure that you can still feel it and the equipment is working.

Don’t forget the stimulator box is attached to you. If it pulls, it may dislodge the wire.

What to do if you can no longer feel the stimulation

If, on turning the stimulator up each day, you cannot feel anything at the level previously set, try turning it up slightly more as sometimes over time this will alter.

If, despite doing this, you still cannot feel anything, turn the stimulator off and change the battery. Then go through the process again. If still nothing happens, contact the Specialist Nurse or Consultant.

Precautions

When you move (especially bending/twisting), the wire may move slightly in relation to sacral nerves and the level of stimulation may change, so you could feel a sudden increase or decrease in stimulation.

This is normal but could feel uncomfortable and give you a surprise, and make you jerk suddenly.

For this reason do not drive or operate heavy machinery or dangerous equipment during the test period. If for any reason, you suffer any of the above, turn the stimulator off and on again.

Level of activity

The temporary wire is not stitched in place and is only held in place by the dressings covering the area.

To avoid dislodging the lead:

• Limit your level of activity to low or moderate. For example, filling the kettle is fine but avoid lifting anything heavier, ie wet washing. Gentle walking is okay, but avoid more vigorous exercise, such as aerobic exercise or sexual intercourse.
• Make sure the area around the wire is kept dry/undisturbed; this will also help prevent infection.
• Under no circumstances should you remove the dressing. If it becomes loose, just stick it down.
• Bearing the above in mind, it is important that you continue with your usual activities so don’t just sit in a chair for the entire testing period without moving, as we will not get a true picture of how the stimulation is affecting your incontinence.
• Eat and drink as normal.
• Take medications as you normally would.

Who can I contact for more help or information?

Oncology nurses

Uro-oncology nurse specialist
01223 586748

Bladder cancer nurse practitioner (haematuria, chemotherapy and BCG)
01223 274608

Prostate cancer nurse practitioner
01223 274608 or 01223 216897

Surgical care practitioner
01223 348590 or 01223 256157

Non-oncology nurses

Urology nurse practitioner (incontinence, urodynamics, catheter patients)
01223 274608

Urology nurse practitioner (stoma care)
01223 349800

Urology nurse practitioner (stone disease)
07860 781828

Patient advice and liaison service (PALS)

Telephone: 01223 216756
PatientLine: *801 (from patient bedside telephones only)
Email PALS

Mail: PALS, Box No 53
Addenbrooke's Hospital
Hills Road, Cambridge, CB2 2QQ

Chaplaincy and multi faith community

Telephone: 01223 217769
Email the chaplaincy

Mail: The Chaplaincy, Box No 105
Addenbrooke's Hospital
Hills Road, Cambridge, CB2 2QQ

MINICOM System ("type" system for the hard of hearing)

Telephone: 01223 217589

Access office (travel, parking and security information)

Telephone: 01223 596060