Questions to ask about Neurosurgeons, Programmers and Deep Brain Stimulation

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www.care4dystonia.org

Questions to ask about Neurosurgeons, Programmers and Deep Brain Stimulation
By Beka Serdans, RN, MS, NP

Your First Task is to:

Get names and phone numbers. Try an Internet search. Several websites list physicians across the country especially the group www.yahoo.com websites of DBSSurgery and DBSforDystonia. Scroll to the physician referral link on major medical center/facility websites in your area as well. An example is:

University of Maryland Department of Neurology
http://www.umm.edu/neurohome/
Maryland Parkinson’s disease and Movement Disorders Center
http://www.umm.edu/parkinsons/index.html

Visit Medtronic’s Website www.newhopefordystonia.com.

Post inquiries on the multiple tremor, PD and dystonia Message Boards that exist online today. Many of these Boards have extensive lists of “Who is Who in Tremor, PD, Dystonia and DBS.” You may need to email others directly to inquire about available medical care in your area.

Ask family, friends, and co-workers for help. Contact your local support tremor, PD or dystonia group or State and County medical societies, Hospital referral services, other doctors or nurses and word of mouth (relatives, neighbors, co-workers). Don’t be shy in asking or learning “Who is Who in Deep Brain Stimulation”. After all it will be your brain that will be operated on eventually. Be aware that you may need “medical clearance “ from your primary care physician or Internist first. Medical clearances generally involve a routine visit to your general practitioner or Internist.

Ask yourself “How far can I travel?” Patients with complex conditions will travel any distance to see a good doctor, if they can. Realistically, driving is very hard on some and impossible for others. Think about what you can consistently manage. Think about in terms of location of your programmer – you want an experienced programmer as trust and confidence are essential in this long-term relationship.

Does my insurance restrict who I can see or where? It is easier to work within your insurance guidelines than outside of your network, but consider all possible doctors, regardless of insurance.

Call to set up an appointment. Call more than one number, if possible. Is there a fee for an interview with a doctor? Generally there is not a fee for so called no-cost interviews.

Share your goals and expectations with the staff after arriving. Sometimes meeting others in the waiting room can clue you in on the office and the quality of care being provided to patients. Tell the receptionist what type of care you expect.

Ask the following Questions:

Is the Physician “Board-certified” in Neurosurgery? Do they specialize in movement disorders? In tremor? In dystonia? In PD ? Where did he/she complete their medical training? Did they complete a “Fellowship” in performing DBS and where ? What are their credentials? How many cases have they performed in actuality ? Are they in the Operating Room the entire time or do they leave their “residents” to pick up the pieces meaning “ sew you up “? What “outcomes “have they had with their patients ? Success rates ? Complication such as infection rates ? Have they participated in any publications about DBS or clinical trials for DBS ?

Is the physician affiliated with a medical center(s) that is approved by the Joint Commission on Accreditation of Healthcare Organizations?
You can find this information on the American Board of Medical Specialties website (ABMS): www.abms.org and Specialty licensing boards: www.abms.org/member.asp.

How many patients with PD, tremor or dystonia does he/she treat on a weekly- monthly basis? How frequently are patients with PD , tremor or dystonia are seen during an office visit? How many DBSs’ are performed on a weekly basis ? How long ( years ) have they been performing DBS ? What criteria do they use to select patient candidacy ? Do they utilize functional assessment scales ? How frequently and when ?

Is the neurosurgeon familiar with Programming guidelines? If so, who does the programming in the office/clinic (i.e. the neurologist/neurosurgeon attending / nurse/nurse practitioner)? If it is a nurse or an NP what is their experience? Have they attended workshops-classes for programming ?? What are their exact qualifications ?

Does the neurosurgeon work with a coordinated team? Is there a neurologist available for consultation such as needed if medication changes are necessary? If there is no team approach available, are these individuals (dietician, physical therapist, social worker, neurologist etc.) easily accessible by referral?

What is the waiting time to get an appointment for consultation and the procedure? Weeks? Months? What is the usual waiting time in the office before you actually see the neurosurgeon? Are family members allowed to attend appointments? Is there someone ( ie .programmer, neurosurgeon etc. ) on 24-hour emergency call? How easily can you contact them?

Does the office/center carry patient education material about PD, tremor or dystonia? Is the Patient’s Bill of Rights posted and visible in the office/center? Is there any material offered in the office from Medtronic, the company that makes the DBS technology ?

Does the physician accept your medical insurance policy? Are there any out-of-pocket expenses? The cost of DBS in the US is typically in the $75,000 range and is usually covered by health insurance.

Will you have access to your medical records including CT Scans, MRIs? Are prescriptions updated on a consistent basis?

Ask as many questions as you need. Ask to speak with another patient who is being currently treated for PD, tremor or dystonia with DBS.

Evaluate the office/center-staff:

Was the receptionist/office-center staff courteous and helpful? Was the office/center clean or cluttered? Are OSHA policies in effect?

If paperwork needs to be completed, how difficult was it? Are forms in Spanish or other language available?

Was the waiting room comfortable? Is the office-center handicapped-accessible?

Is there possible assistance with transportation to/from appointments? Is there a 24-hour appointment cancellation policy?

What to ask about DBS- the procedure :

What is Deep Brain Stimulation ? Can you explain it to me in simple non-medical terms ?
Do you have a sample model of the device and hardware to show me ?
Is there an age limit to having DBS ? How old has the oldest-youngest persons been that you have operated on – what were their outcomes ??
What are the risks involved in DBS ? Percentages ?
What are your infection-hemorrhage-stroke- rates ?
What precautions do you use post-operatively to minimize the risk of infections ?
How long will the procedure be ? ( Ask about time, etc. )
Will I be awake during the procedure ? ( until the IPG placement )
What are the risks associated with general anesthesia ?
If the procedure will be performed with me being awake, what sedative medications ( ie. Versed, Fentanyl, Valium etc. ) will be used ?
What anti-emetics ( anti-nausea ie. Zofran ) will be used in the Recovery Room ?
Will pain medications be available to me after the procedure ? If so, what ?
When is the pre-DBS MRI performed ? Under controlled sedation ?
When is the post-CT Scan of the head performed after the procedure ?
Which device would be better for me – the Soletra or Kinetra ?
How visible will the IPG be ?
What is the battery life for the Soletra ? Kinetra ?
Will the leads be placed bilaterally and where ? STN area ? GPI ? Thalamus ? Or a combination of those areas ?
Where do you place the IPG – subclavicular area , abdomen ?
Please explain the micro-lesioning effect ? How will that affect me post-operatively ? How long does this effect last ?
What will the length of my hospital stay be ? 24 hours or more ?
How many incisions will I have ? How do I care for them when discharged from the hospital ? What are signs of infection ? Stapilitis ? Redness ? Discharge ? When can I remove the dressings ?
When can I take a shower ?
When can I go back to work ? School ? My usual Routine ?
Do you use the Lasker frame or IGN Navigus System ?
Do I have to shave my hair off ? Will I lose my hair ? How long will it take to grow back ?
Is microelectrode mapping used during the procedure ? If so, why ?
What is my participation during the surgery when I am awake ?
Will I have a catheter placed in my bladder ( Foley ) ? What are signs of a UTI ( urinary tract infection ) ?
Will I be given antibiotics before/after the procedure ( Zosyn, Vancomycin etc. ) ?
Should I stop my medications before the procedure ? ( ie. Sinemet, Artane, Baclofen etc. ) ? Will they need to be restarted after the procedure ? By whom ?
What will the positive effects of DBS be on my disease ? ( PD vs dystonia vs tremor vs other condition etc.)
Will there be any negative effects depending on my disease ? Its duration ? My age ?
When will I be turned “ ON “ ? What will I feel ? Will it hurt ?
Under what circumstances is a person turned OFF ?
Can you explain programming terminology – voltages, pulse widths and rates ?
How often will programming be performed ? Frequency ? Adjustments ? By whom ?
Will I be provided a print-out of my settings during each office visit ?
What are the usual reasons for device removal ?
How often does hardware failure occur ? If so, how will I know ?
How often does lead migration and breakage occur ?
How will I know if my battery is failing ? Is there any advance warning ?
If my battery or hardware fails, how soon should I expect a reoccurrence of disease symptoms ? How soon can the battery be replaced ?
How is the battery replaced ? General anesthesia or local ? In-patient or Out-patient basis ?
What are side-effects of over-stimulation ?
Should I keep a log or diary of each office visit post-DBS/adjustment session ?
Should I avoid saunas, hot tubs, roller-coasters and other strenuous activities ?
Should I avoid MRIs post-DBS ? What are the facts about this ?
What is the Access Review patient programmer ? When should I use it ? How do I use it ?
Will I be able to change-regulate my own settings ? Is this an option for my disorder ?
What precautions should I take when being in the airport ? Walking thru anti-theft devices ?
Can I go near microwaves, use cell phones etc. ?
Should I wear a Medic Alert Bracelet ??
What are the incidents of post DBS depression, anxiety and suicide ?
What do you, as my physician, and I should expect DBS to do for me ? For my specific disorder ?

Make your Choice:

If you’re satisfied with the Answers, go for it! But, remember “it’s your time and your brain.” Ask yourself whether you are ready for this procedure mentally, emotionally and socially ? Do you have family and friend support available ? Do not enter the procedure with immediate and high expectations. Immense PATIENCE is required. Utilize support systems if need be on a regular basis.

Use your intuition and well-informed information when coming to a decision. If you “feel uncomfortable” with the neurosurgeon or the office/center, they most likely are not the “right” neurosurgeon for you. One basic element to remember is that “Not all Neurosurgeons are DBS Specialists “ . Reread this sentence again. We often don’t realize the meaning or importance of this basic element. Bear in mind : Trust your gut feelings also. Your main goal is to interact with each doctor and programmer, checking for a comfortable fit and ability to work together as a team. Keep in mind – DBS involves brain surgery.

Your final task is to begin writing all of your symptoms and questions in a diary/log or in a note pad. Questions can easily be forgotten when visiting a physician. This “diary” becomes your own personal medical record of PD, tremor and dystonia. And it may be prove to be of great value to both you and your chosen healthcare provider.

Good Luck!

Useful Websites:

Yahoo BBs : www.yahoo.com DBSSurgery and DBSforDystonia
http: www.rewiredforlife.org
www.medtronic.com
www.parasphotography.com/beka.html
www.care4dystonia.org

American Medical Association Online Doctor Finder:
www.ama-assn.org/aps/amahg.htm
WebMD: http://www.my.webmd.com
Doctor Directory: http://www.doctordirectory.com
Web Guide: http://www.docguide.com
Interactive website: http://www.findadoc.com

About the Author : Beka Serdans, RN, MS, NP is a practicing RN in the Open Heart Unit at New York-Presbyterian Hospital in NYC. She is Founder of the non-profit Care4Dystonia, Inc., an published author, speaker, educator, and strong patient advocate for persons suffering with dystonia. She, herself, has had dystonia for over 20 years and underwent DBS in December 2004. Email : infoc4d@aol.com

Permission granted for copying and distribution to patients, families and additional healthcare providers. ( rs05) Reviewed by Medtronic, Inc. Staff August 2007.
With Sincere Thanks to Joseph McGrath at Medtronic, Inc. ~ beka

My mom and I wanted to thank you for hosting such a great symposium this year. This was our third year and we are looking forward to next years. E. Mathews