Living with Dystonia Is Not Fate: A New Beginning After Treatment

Living with Dystonia Is Not Fate: A New Beginning After Treatment

Dystonia twists not only the muscles but also the spirit, paralyzing social life. Sitting at a café and trying to enjoy tea, trembling while signing documents, fearing crowds, avoiding people’s gaze, and experiencing heightened stress… Dystonia patients endure more than physical pain—they also face serious social isolation, loss of confidence, and depression.

So, what happens after treatment? What will you feel? What changes?

Will life magically improve the moment you leave the operating table or after that Botox injection, or is it a journey that requires effort and patience?

Based on Assoc. Prof. Dr. Mehmet Sorar’s experience with thousands of patients over the years, let’s explore what comes after treatment—the moment the real story begins, the path to recovery and reintegration into life.

Comfort and Quality After Botox

For patients receiving Botox, the process is fast and practical, but there is an important detail: immediate results are not visible.

First 3–7 Days: The medication needs time to settle into the nerve endings and take effect. Don’t worry if you don’t notice improvement immediately.

Second Week: The effect fully sets in. The neck relaxes, eyes open, tremors stop. This is typically the period when patients actively engage in social life.

3–4 Months Later: The effect gradually diminishes. Small contractions may return. This does not mean the condition has worsened—it simply indicates the “charge” is running out. It’s time to schedule the next appointment with your doctor.

After Deep Brain Stimulation (DBS)

The process for patients with a DBS implant is slightly different—exciting but requiring patience.

After surgery, the device is not activated immediately.

Why?
Because small swelling (edema) occurs where the electrodes are placed. It takes about two weeks for the swelling to subside and the brain to settle. This is called the micro-lesion effect, and sometimes tremors stop temporarily even before the device is turned on.

Device Activation

Once the stitches are removed, the patient returns to the clinic. Dr. Mehmet Sorar and his team connect remotely to the chest-implanted device using a special tablet (think of it like a Bluetooth system).

The moment the DBS is activated and voltage is delivered, seeing your hand that trembled for years or your twisted neck stop instantly is an emotional and unforgettable moment—for the patient, loved ones, and the medical team.

Fine-Tuning Process

Activation does not mean everything is perfect. Think of the DBS like a custom-tailored suit, not an off-the-rack outfit. Initial settings are coarse, and adjustments are made over weeks and months.

Voltage is increased, frequency adjusted, and electrical direction fine-tuned. The goal is maximum benefit with zero side effects. This process can take 3–6 months. Some temporary increases in muscle contractions are normal and corrected during follow-ups.

Social and Psychological Recovery: Stop Hiding

Even when physical contractions subside, the subconscious effects of patient psychology take time to resolve. Someone who has hidden for years cannot immediately reintegrate into crowds—it is natural and human.

If your neck has twisted right for years, the left-side muscles are weak, and the right-side muscles shortened. Even if the DBS stops contractions, intensive physical therapy is required to restore balance.

If the DBS does 70% of the work, your effort and physiotherapy complete the remaining 30%. Professional support to manage anxiety improves the overall quality of recovery.

Daily Life Guide (FAQ)

Q: Will I trigger X-ray machines or mall security gates?
A: Airport or mall detectors will not damage your DBS or change its settings. Depending on metal content, devices may beep. Show your DBS Patient ID Card provided after surgery and request a manual check for safety.

Q: Can I have an MRI with a DBS implant?
A: Older-generation devices were incompatible, but Dr. Mehmet Sorar uses new-generation MR-compatible devices. With specific settings (DBS in MRI mode), you can safely undergo full-body MRI. Always consult your doctor and inform the radiology technician before scanning.

Q: Is using a mobile phone harmful?
A: No. Just avoid carrying your phone in the chest pocket with the device. Normal phone use, social media, Wi-Fi, microwaves, and TVs do not affect the DBS.

Q: Can I exercise?
A: Absolutely! Recommended activities include swimming, walking, and light jogging. Avoid contact sports like boxing or wrestling, or activities where your chest area may be hit.

Life Does Not Wait

The contractions that forced you to live in isolation, build walls between you and loved ones, or “teach” you to adapt to dystonia do not have to define your fate.

The medical world opens new, reliable doors every day, and the key to that door is now in safe hands in Ankara with Dr. Mehmet Sorar.

He and his team do more than treat your condition—they work to restore those simple, priceless normal moments and recover the years lost to dystonia.

It is never too late. But remember, life doesn’t wait. Let’s plan comfort, reliability, and a normal life together. Don’t let your life wait.