Chiari Online Support Group

Finding a Doctor


#1

Bens Friends Doctors We Like:

Recommended Doctors List

This list is a list Doctors recommended by our members based on their own experience.

Finding a new doctor can be difficult, and very scary.  Being prepared can make the whole experience much easier on you and on the new doctor.  Remember that the doctor works for YOU, and if you are uncomfortable, then you are free to keep searching for someone else.  The best doctors are ones that spend time with you, listen to your concerns and take them seriously, and are willing to work with you to find the treatment that is best for you.  If you find that the doctor is NOT listening, NOT spending ample time on a thorough exam, or NOT taking you seriously, run the other way!!

Furthermore, you may want to read great tips  from Mayo Clinic's article, "Preparing for your Appointment" through this link. The link has useful information that will help you get ready for your appointment, and some ideas about what to expect from your doctor.

 

For your part, the best thing you can do is write up your medical history.

You should include:

  • Any conditions you have and when they were diagnosed
  • Your current medications with the dosages
  • Past medications and why you no longer take them
  • Any allergies you have and what happens with them
  • Any treatments you are currently on (C-PAP, physical therapy)
  • Your surgical history with dates
  • A list of your doctors with phone numbers and addresses
  • A list of recent radiology tests and the dates, and where they were done
  • The date of your last bloodwork
  • A list of all your current complaints, no matter how small, with the approximate dates they started


Other things you should bring with you:

  • Insurance card or information
  • Necessary insurance referrals
  • Driver's license or ID
  • Your medical records from previous doctors, if you have them.  Otherwise, contact all of your doctors in advance and request that they mail or fax them to the new doctor.  You will need to fill out a release in order for the records to be forwarded.  These should include all test results and doctor notes.

 

Chiari-Specific Questions to Ask Neurosurgeon or Neurologist:

If a surgery is being discussed, find out exactly what is performed/what kind if decompression is done. Every surgeon differs in their approach and for different reasons. Here are the most common procedures that come with the surgery:

Bony decompression only - only removal of sub-occipital skull. Some people that have this done will eventually have another surgery to open the dura.

With plate to the back of the skull - why or why not does the surgeon place a plate?

Duraplasty - the dura matter is opened to create more space, then a material is sewn in to replace it - why or why not? you might wish to ask about the incidence of CSF leaks for this particular surgeon. Some surgeons will not open the dura because they have a higher rate of CSF leaks.

Laminectomy - removal of the back of C1 or sometimes C2 and 3 to create more space for the spinal cord.

I would also raise the questions if you have:

Hypermobility syndrome/ Elhers Danlos Syndrome - common among Chiarians, it can cause instability of the spine and at the cranio-cervical joint.

Dysautonomia - deregulation of the autonomic nervous system, it can be treated with medication.

General

1. Family members may have chiari, should an MRI be ordered for them?

2. Do I need to see a neurologist?

3. Is surgery necessary?.  What is the mm of the herniation?

4.  What are the options of the MRIs?

5.  What causes Chiari?

6.  Will you check for Ehlers Danlos, Dysautonomia,  or other related conditions?

7.  Are there any other tests that need to be done?

8.  What exactly is causing symptoms? (explain or have a list of your symptoms)

9.  Should there be any restrictions of current , horseback riding, bike riding?

10.  Recommended Books, brochures or websites, support groups?

11.  Genetics - % that other children, how soon?

If Surgery is not recommended, here are additional questions:

1. What is the treatment plan/what are the options available?

2.  Pain Management?

3.  How often to be monitored?

If Surgery is recommended, here are additional questions:

formed?

Do you shave off the tonsils?

What are the risks and compWhat are the risks and complications if I choose not to have surgery performed?

What are the positives to come from surgery?

Success rate with surgery?

What kind of surgery do you do? Endoscopy, Bone decompression, PFD w/duraplasty - what kind of patch?

How many surgeries do you perform per year?

How is the surgerys the surgery continuous?

Will my hair be shaved?

Have any of your patients died or had complications?

How long does surgery usually take?

What time does surgery usually start?

How many surgeons are in the OR?

Do the surgeons take breaks...or ie shaved off or just in the area of surgery?

Will someone give my family current updates?

How big is the incision?

How is the incision closed? i.e. stitches, glue, staples

How long does it take the incision to heal?

Is there any blood loss?

Should we donate blood?

Is there any plates, screws, etc. used?

How can we and should we prepare for surgery?

Are there counselors or social workers that we can speak to?

After having this surgery, could there be further surgeries?

If we travel, are there any recommended places we should stay?

How do we get in contact with them?

How many days do we need to be there before surgery day?

Does anything go on before the surgery day?

What are the charges for surgery? Hospital? Doctors? etc.

Personal insurance questions insert here!!!

Questions about Syrinx:

Is there any, where, how many, and how big?

If yes, will they go away or shrink after surgery?

Can they be drained?

After having surgery, can more appear later?

Questions about Tethered Cord:

Do I have a tethered Cord?

If no, could I still have it....and just not be able to see it on the MRI?

If yes, do I still need surgery to repair that?

Is this a separate surgery?

How long is that surgery?

Can it be cone while the other surgery is done for the Chiari?

After Surgery Questions

Will I need special PJs for and after surgery? Suggested items I need to bring from home after the surgery?

Will I be in ICU after surgery?  How long?

How soon after surgery can my family see me?

How long will I be in the hospital?

How often can my family visit me while I am in the hospital?

How long do we need to stay in the area after being released from the hospital? (If traveling)

Will there be any delays after surgery? i.e.  physical, cognitive

Will I have to wear a brace, supports? How long?

Recovery time...general?

Will I need Physical Therapy?

When can I resume work or school?

Any restrictions after surgery? ie, roller coaster, sports, etc.

What will I be given for pain?

Can my husband/parents/wife stay overnight with me?

Can I get something to eat after surgery?

Any test performed after surgery?

Visitors after surgery? like friends

Will I have my own room or a shared room?

What is the likelihood of me coming down with meningitis after surgery? Hydrocephalus?

What signs and symptoms do I need to watch for after surgery?

Preferred method of transportation back home?

Will I have rechecks with the neurosurgeon? How often do I need to come back for check ups?

Recheck MRIs - how often, how many, and for how long?

When sent home, can a full report and suggested aftercare/treatment plan be given to my GP?

Do we still need to see a neurologist after surgery?

How do we contact (doctor) neurosurgeon after we get home with any other questions?

By: Ben Munoz

Common Symptoms Reported By Members*:

  • Severe head or neck pain
  • Occipital Headache (top of neck/base of skull) made worse by coughing, straining, laughing, yelling, vomiting
  • Loss of sensation or pain in upper arms
  • Dizziness
  • Balance problems
  • Double or blurred vision
  • Nystagmus
  • Sensitivity to bright lights
  • Sensitivity to loud noises
  • Tinnitus
  • Hearing heartbeat in ears
  • Loss of gag reflex
  • Loss of sensation/numbness in hands or feet
  • Pins and needles sensation in hands or feet
  • Sleep apnea
  • Muscle weakness
  • Scoliosis
  • Chronic pain
  • Pressure in head and/or ears
  • Problems swallowing
  • Problems with word finding
  • Memory problems
  • Mental fog
  • Fatigue
  • Breathing problems
  • Sensitivity to smell/loss of smell
  • Strange sensations on/under skin
  • Vomiting
  • Insomnia
  • Depression
  • Problems with hand coordination/fine motor skills
  • Face/jaw/scalp/sinus pain
  • Restless Leg Syndrome
  • Loss of bowel/bladder control

*Not all of these symptoms are directly related to CM nor are they all common