DBS — What questions to ask the DBS neurosurgeon?

[Kingdomcome]

I have an appointment with the DBS neurosurgeon next week for evaluation before the surgery, should I decide. I’ve already had the brain MRI and the Neuropsych evaluation. I’m 70 yrs old, female, 86 lbs, and diagnosed 6 1/2 yrs ago. I’m on C/L only, one tablet, 3 times daily. I’ve tried other meds with C/L but had adverse effects with all of them. Dyskinesia and tremors on left arm/hand, and left leg/foot. Also spasms under front ribs and upper back. Slow movement, impaired balance, shortness of breath, shallow breathing. Was also diagnosed with Lymphedema 2 yrs ago. Fortunately, sleeping in an inclined bed helps keep the swelling in my legs at bay. Any help would be appreciated.

[MBAnderson]

1) how many of these procedures have you performed?

2) what percentage of those people are totally happy with their results? I am not asking what percent you consider successful. I am asking what percent of patients consider it successful?

3) how many significant deficits have occurred??

4) how many visits does it take to get the settings correct?

5) at what interval are those visits?

6) what's the purpose and waiting a full month in between setting adjustments, i.e., if the setting is clearly wrong why not meet me sooner?

7) how many different symptoms and which ones will I experience relief from?

8) how long should I expect the benefits the last?

[MBAnderson in reply to MBAnderson]

PS. How tall are you? Have you been treated for cancer?

[Kingdomcome in reply to MBAnderson]

I’m 4’ 10”. No cancer.

[Kingdomcome in reply to Kingdomcome]

Also diagnosed with severe osteoporosis. My PCP said there’s no cure for my Lymphedema.

[Kingdomcome in reply to Kingdomcome]

Thank you so much!

[felixned in reply to Kingdomcome]

Do you drive? If so ask him when do typically people resume driving after surgery?

As far as lymphodema I had really bad one while on Miraplex. After I stopped it and started using compression pump on my legs daily I experienced what my vein doctor called a "remarkable recovery"

[Kingdomcome in reply to felixned]

I stopped driving because I have double-vision sometimes.

That’s great about your recovery from lymphedema. Your legs don’t feel like they’re stuffed? My legs don’t appear to be swollen but they feel stuffed, some areas anyway. I should see a vein doctor. Thanks for the info.

[felixned in reply to Kingdomcome]

I experience stuffed legs only when in off state. I would show them to your neurologist.

[Kingdomcome in reply to felixned]

Is the skin on your legs dry and flaky, and dark patches in some areas, and itchy sometimes?

I’m wondering if the “stuffed-legs” feeling is a PD symptom, not lymphedema symptom.

[Kingdomcome in reply to MBAnderson]

Thank you so much!

[MBAnderson in reply to Kingdomcome]

If you have the option of researching a few of the DBS providers near where you live, I would look for a neurosurgeon with experience. You can probably find that info online.

[Kingdomcome in reply to MBAnderson]

I live in Los Angeles, CA. I’m a patient at Cedar-Sinai Medical Group in L.A./Beverly Hills. I’ve previously met with the surgeon who explained DBS, in general, to me and my daughter. Unfortunately, I wasn’t prepared with any questions.

I can confidently say that the surgeon looks mature enough to have adequate experience with DBS. Cedar-Sinai is a reputable medical group and I’m satisfied with their service.

I’m having a bad day today; no energy and feeling light-headed. Thank you.

[MBAnderson in reply to Kingdomcome]

Clearly, they are very well-regarded institution.