1. Your pain relief from trigeminal neuralgia will be immediate (in about 90% of patients undergoing MVD.) About 8% of the patients will experience gradual pain improvement, while the remaining 2% will experience no significant relief.

2. Your postoperative headache will improve very fast, and this will be at its minimal, or very manageable with an oral pain medication, by the time you go home.

3. Your trigeminal neuralgia medications will be reduced to half of the preoperative dosage, with a plan of having you gradually further taper your medication(s) until completely being off over a period of 2-4 weeks.

4. You will be asked to return 10-14 days following your surgery for suture removal.

5. You will use your common sense as to how much or little you do at home. Doing too much will wear you out and at times cause worsening headaches, while doing too little or being sedentary at home may cause dangerous complications such as pneumonia and deep venous thrombosis (DVT) in your calves.

6. My recommendation is to be as active as you can tolerate, going for walks and increasing the overall level of activity on a daily basis.

7. Expect to return to work in 4-6 weeks following surgery in most situations.

8. You will again return for a routine postoperative follow-up evaluation in 6-8 weeks to see me, at which point you will be completely off of all trigeminal neuralgia medications.

1. You will be asked to come into the hospital 90 minutes to 2 hours prior to your scheduled surgery.

2. Just prior to being taken into the operating room (OR), you will meet your surgeon again to go over any last minute questions or concerns you may have, and also meet your anesthesiologist.

3. Once in the OR, your anesthesiologist and the OR nursing personnel will do a “time out” to confirm your identification and the scheduled surgery to be performed, followed by preparing you for general anesthesia and surgery. This includes starting 2 IV lines, an arterial line if needed.  Placement of a Foley catheter is rarely needed (for bladder emptying during surgery) because of the short operative time.  Then, you will “go to sleep” after having an endotracheal tube inserted.

4. Surgery will then begin (by the surgeon) with the proper body and head positioning. For MVD, your head will be fixed in a 3-pin frame for the duration of your surgery.

5. After optimal body/head positioning, an area on the scalp behind the ear will be shaved (as little as possible). The incision is then marked (4 cm incision), followed by the surgical site being prepped with a sterilizing solution.

6. Then, the head and body will be “draped” with only the shaved & prepped incision area of the scalp exposed.

7. Surgery then begins after another “time out”, to confirm that the correct patient is in the OR, and the correct surgery is being performed on the appropriate side of the head/brain as scheduled.

8. Surgery will last about 45 minutes.

9. After surgery, a sterile head dressing is applied, general anesthesia reversed, and the endotracheal tube removed as you “wake up” from surgery and anesthesia.

10. A quick neurological evaluation is usually performed by the surgeon after you “wake up” from surgery, prior to leaving the OR.

11. You will be taken either to the recovery room (“PACU”), followed by a nursing floor or directly to the intensive care unit (“ICU”) for postoperative management.

12. Your will meet your family about an hour or two after completion of your surgery in your room.

13. You will be encouraged to get out of bed and move around from the day following surgery when your diet will also be advanced, as tolerated, to a regular diet.

14. Your hospital stay will vary anywhere from 1 to 2 days.

1. In the few weeks leading up to your surgery, you will obtain the following preoperative evaluations: Chest X-ray, EKG, blood tests (Metabolic panel, CBC, PT/INR, PTT)

2. In preparation for surgery, you will be instructed to discontinue any blood thinners (such as Aspirin, Advil, Coumadin, Plavix, etc.) from 3 to 7 days prior to surgery. If this instruction is not followed, your surgery will be canceled.

3. You will be instructed to not eat or drink anything after midnight prior to the morning of surgery. On the day of surgery, you may take important medications with minimal sips of water (such as medications for hypertension).

4. You will continue taking your trigeminal neuralgia medications, unless otherwise instructed, until the day prior to surgery.

1. Correct diagnosis, based on a careful analysis of the clinical history and examination, is critical to therapeutic success.
2.  MRI must be done to rule out the presence of:

MS

Mass lesion (tumor or cyst)

Vascular compression

3. All trigeminal neuralgia patients should undergo a trial of medical therapy.

4. Surgery is to be considered when medical therapy fails, or the patient experiences significant side-effects.

5. Approximately 50% of patients will eventually require surgery due to failed medical therapy.

6. TN patients should be aware of all – ablative vs. non-ablative – surgical options.

7.   For non-MS patients with evidence of vascular compression on the MRI scan, MVD is  the treatment of choice:

Surgery is simplified (minimally invasive surgery)

4-cm incision,

<2-cm bone opening (“suboccipital craniectomy”)

45-minute surgery

Foley catheter not needed (for bladder drainage during surgery)

Minimal blood loss, avoiding blood transfusion

1-2 days of hospital stay

Negligible permanent facial numbness as compared  to 80% following ablative surgery

The patient is positioned lying flat (“supine position”) with a small area behind the right ear shaved, and the incision marked.

A 4 to 4.5 cm-incision is marked (1 ¾”) behind the right ear.

The size of bone opening (“craniotomy” or “craniectomy”) shown above is 15 mm, which is less than the diameter of a dime (18 mm).

Exposure of the right trigeminal nerve (“N”) and the surrounding vein (“V”) and artery (unmarked, on the far side between the vein and nerve).

Surgical instruments – suction on the left and bipolar electro-cautery forceps on the right – being used through the bone opening.

The offending artery (“A”) is being dissected away from the nerve (“N”) with a micro-instrument (appearing blurry, just below the letter “A” marking the offending artery).

The offending artery is completely separated far away from the nerve.

A Teflon felt is placed between the trigeminal nerve and the surrounding artery (now covered by the felt), completely relieving pressure off of the trigeminal nerve, thereby completing the surgery of “microvascular decompression” (“MVD”).

Surgery is considered when (1) medical therapy fails to adequately control trigeminal neuralgia, (2) patients are unable to tolerate medications’ side-effects, or (3) patients do not like the prospect of being on long-term medications. 

Surgical Options:

A) Ablative (“to destroy a function by application of a noxious substance”) Surgery:

For some unknown reason, when a segment of the trigeminal nerve is “damaged” (by way of “lesioning” or “ablation” applied to it) by a noxious agent, trigeminal neuralgia pain disappears or improves.  There are several surgical means of creating a focal area of “ablation” to the trigeminal nerve, and these include:

Gamma Knife (GK) Radiosurgery –

A single shot, focused radiation targeted to the trigeminal nerve

Balloon Compression Rhizotomy –

Lesioning by way of a mechanical compression to the nerve

Glycerol Rhyzotomy –

Chemical lesioning to the nerve by a type of alcohol

Radiofrequency (RF) Rhizotomy

Thermal (heat) lesioning to the nerve by RF

Long-term success rates:  Glycerol 60%, Gamma Knife 65%, Balloon 67%, RF 75%

Advantages:

Short operative time (15 to 45 minutes)

Avoids general anesthesia, performed under IV sedation/local anesthetic

Good initial pain relief

Same-day procedure and quick recovery

Disadvantages:

Permanent facial numbness – RF 80%, Balloon 50%, Glycerol & GK 30%

Significant pain during surgery (performed without general anesthesia)

Need to repeat procedures due to relatively high pain recurrence rates

      Indications for Ablative Surgery:  (When to proceed with ablative surgery?) 

1. Trigeminal neuralgia patients with MS (multiple sclerosis).
2. Trigeminal neuralgia patients with no clear vascular compression on the preoperative MRI.
3. Trigeminal neuralgia patients with significant medical illnesses which preclude major surgery under general anesthesia.
4. Patient’s personal choice after thorough discussion of all options.
5. Which specific ablative procedure to be done depends on the individual surgeon’s personal experience and choice.

B) Non-Ablative Surgery: Microvascular Decompression (MVD)        

The only non-ablative surgical technique available for trigeminal neuralgia patients is microvascular decompression (MVD).

Indications for MVD: 

1. Trigeminal neuralgia patients with clear vascular compression on preoperative MRI.
2. Patients healthy enough to undergo 1 hour of surgery under general anesthesia.
3. Patient’s personal choice after discussion of all treatment options.

Advantages:

High success rate (95% when patients are carefully selected)

Low risk of permanent facial numbness

Minimal complications (when surgeon is experienced)

45-minutes of operative time, avoiding Foley catheter or blood transfusion

Small incision and craniotomy (bone opening)

Fast recovery (1-2 days of hospital stay) 

Disadvantages:

            “Brain surgery” with its associated risks (very small, but present)

            Requires general anesthesia (<1 hour)

Personal Recommendation:  Based on treating trigeminal neuralgia patients for nearly 30 years, my personal recommendation is MVD as it guarantees a high success rate with a low risk of permanent facial numbness.  (95% success rate initially, 75-80%  long-term success rate, <5% permanent numbness)

All trigeminal neuralgia patients should undergo medical therapy initially as many patients respond very well to medications.  Anti-seizure medications work well in treating trigeminal neuralgia.  The best medication for trigeminal neuralgia is Tegretol (Carbamazepine) which relieves trigeminal neuralgia in about 60% of patients initially.  Other trigeminal neuralgia medications include, either as a single agent or in combination, Dilantin, Neurontin, Baclofen and Keppra.  Success rates for these medications are in the range of 30-40%.

For many patients, toxicity (e.g. bone marrow and liver toxicity for Tegretol) and side-effects (drowsiness, dizziness, imbalance for all trigeminal neuralgia medications) are not insignificant, and when taking Tegretol, blood tests are required on a regular basis to monitor the liver and bone marrow functions as well as the blood drug level.

Medical therapy must be closely monitored to achieve the goal of pain relief while minimizing side-effects.  At times, when treating trigeminal neuralgia that is refractory to a single agent, a second (or third) medication may be added to adequately control trigeminal neuralgia as long as there is not a significant extent of side-effects.

When evaluating a new patient with trigeminal neuralgia, MRI with and without Gadolinium is done to make certain that there is no underlying mass lesion along the course of the trigeminal nerve (e.g. meningioma, schwannoma, epidermoid, or very rarely, skull base cancer).  At the same time, a special MRI protocol (“CISS” or “FIESTA”) is performed to look for any possible “vascular compression” on the trigeminal nerve.

35 year old female patient’s MRI showing a large tumor arising from the trigeminal nerve (trigeminal schwannoma) as the cause of her trigeminal neuralgia.

72 year old female patient’s MRI showed a massive tumor (meningioma) causing severe compression on the trigeminal nerve causing trigeminal neuralgia, in addition to other symptoms (R sided weakness, walking difficulty and headache).

42 year old patient’s MRI shows the trigeminal nerve (*) compressed by the adjacent arterial loop. Due to the compression, the trigeminal nerve appears thinner than the trigeminal nerve on the opposite side. Additionally, the nerve is “bowed” compared to the nerve that is normal and straight on the opposite side.

Epidemiology (“How common is it, and how is its distribution?”)

1. The incidence of trigeminal neuralgia (“How common is it?”) is about 40/million population/year.
2. Trigeminal neuralgia is more common in the female sex (F:M 1.7:1).
3. Over 80% of trigeminal neuralgia patients are older than 50 years of age at the                           time of onset.
4. 5-8% of trigeminal neuralgia patients have a brain mass (i.e. brain tumor or cyst) causing direct compression on the trigeminal nerve.
5. 2-9% of trigeminal neuralgia patients have multiple sclerosis (MS).
6. 2-4% of MS patients have trigeminal neuralgia.

Natural History

1. 25% of patients experience spontaneous resolution after the initial episode(s), and experience trigeminal neuralgia recurrence months to years later.
2. Approximately 50% of trigeminal neuralgia patients initially managed medically will eventually require surgical intervention due to:
   1. Failed medical therapy
      1. Ineffective medical therapy
      2. Significant side-effects
   2. Personal choice

Etiology (“What causes trigeminal neuralgia?”)

For patients other than those with MS or brain lesions found to be causing trigeminal neuralgia, the “vascular compression theory” is the popular one explaining the cause of trigeminal neuralgia in the majority of patients.  Aging leads to mild brain sagging as well as blood vessel elongation, hardening and dilatation, all of which lead to the nearby blood vessel(s) coming into direct contact with the trigeminal nerve.  This “vascular compression” on the trigeminal nerve leads to certain changes (“demyelination”) within the nerve, ultimately resulting in “short-circuiting” among nerve fibers, which in turn causes the trigeminal neuralgia’s typical electrical shock-like pain.

I have always felt a great sense of gratitude towards all my former patients who taught me so much about the profession I love.  Two of the most important personal principles of mine in medicine (& neurosurgery) are (1) to treat each patient as family, and (2) to regard each patient as a teacher.  It is this second principle that motivated me throughout my career to conduct research studies, write academic papers, and learn from each of my patients so that my future patients will receive better and improved care.  This handbook is a small token of my deep appreciation to all my patients – my real teachers.  As you read this Handbook, please take a moment to thank those who came before you, without whom this Handbook and the improved care I am now able to provide today would not be possible.

It is my wish and intention that this handbook will give trigeminal neuralgia patients enough basic information about their newly diagnosed condition so that their anxiety is eased, and they are better equipped to make educated treatment decisions.

It is also my great wish that the facts outlined in this handbook will give them hope.  Rather than asking “Why me?” as they suffer through excruciating pain, I want all those who read this to finish the handbook on a positive note, having hope that they indeed have excellent treatment options available to them that will result in relief of this awful condition.

With best wishes,

Joung H. Lee, M.D.
President, Valley Neurosurgical Institute &
Co-Director, Hollywood Presbyterian Neuroscience Institute
www.ValleyNI.com