December, 2006 Meeting
John F. Alksne, MD
UCSD Neurosurgery, #8893
200 West Arbor Drive
San Diego, CA 92103-8893
Dr. Alksne (619) 543-5540
Dr. Alksne is also on the TNA Medical
Advisory Board
UCSD Neurosurgery, #8893
200 West Arbor Drive
San Diego, CA 92103-8893
Dr. Alksne (619) 543-5540
Dr. Alksne is also on the TNA Medical
Advisory Board
 |  |
December, 2006 Meeting with Dr. John Alksne
UCSD Division of Neurosurgery at (619) 543-5540 and on the TNA Medical Advisory Board
Recap By: Cherie Sato
Dr. Alksne brought his talk from the Conference so I get to kill to birds with one stone here!!
Dr. Alksne’s speech was “What To Do When The Surgery Fails”
DEALING WITH THE INCONVIENENT TRUTH ABOUT SURGERY FOR TN
You need to be aware in advance of the failure rates of all the procedures. I think that we all go out there to find
the answer that is going to take our TN away forever and that it will be done correctly the first time. There are
times that a compression can be missed if there is more than one. If you happen to get into an auto accident in the
first couple of week of an MVD, the cushion can be bumped out of place and the doctor would have to go back in to
correct it. Any type of head injury within the first couple of weeks can cause the cushion to come out of place. It
takes at least a couple of weeks for the webbing to grow around the cushion and artery in order for the cushion to
stay in place.
No Procedure is 100% effective. MVD has a 15 - 20 % failure over time. The SRS (Stereotactic Radio-Surgery) has a
50 % failure over time and any of the needle procedures have a 50 - 70 % failure over time.
The gamma knife works by a process called Stereotactic radiosurgery, (SRS) which uses multiple beams of radiation
converging in three dimensions to focus precisely on a small volume, such as a tumor, permitting intense doses of
radiation to be delivered to that volume safely.
Discuss with your Neurosurgeon prior to the procedure: Since there are a few different kinds of procedures out
there that may or may not work for you, you need to go over this with the doctor so that you both can decide what
is best for you and which procedure, if any, you are most comfortable with doing. People want to get off the
medications because of the side effects and never have to go back on them. If one procedure fails, you can go back
to the Neurosurgeon and discuss what to do next.
One of the things that I, myself, heard at the conference was to ask the doctor, “How many procedures have you
done correctly?” Of course any doctor would never tell you he has never had any failures. I asked Dr. Alksne what
his response to that was and he said to ask, “How many have you done this year?” If he says, “Three, leave and
go someplace else.”
Have a Plan for What to do if Procedure Fails…. I know that this sounds scary, but it’s important. There are people
that go for years with compression of the Trigeminal Nerve and after about 5-7 years the percentage of an MVD
working goes down.
Recognize that if you do Not Have Classic TN the failure rate is higher: There are classic signs of TN. Tegretol works
right away, you remember exactly when it first started, it goes into remission and there is an electrical shock feeling
that comes from nowhere.
Dr. Alksne’s main point was about the "Bell shaped curve", is that nothing effects everyone the same way. There
are some big winners, some losers, but the majority are somewhere in the middle! A lot of the discussion revolved
around the mechanism of TN.
Dr. Alksne tried to explain that even though we know that either a vessel or MS can cause TN, we don't know why it
comes and goes spontaneously, This next meeting which will be a “Care and Share” meeting is important to all. The
newcomers who will have time to ask questions and share their stories with us how have been around the block,
some of us a few times.
So it will be really nice for those who have been around for a short time or many years with the San Diego Group to
come and share and to give your opinions.
December, 2006 Meeting with Dr. John Alksne
UCSD Division of Neurosurgery at (619) 543-5540 and on the TNA Medical Advisory Board
Recap By: Cherie Sato
Dr. Alksne brought his talk from the Conference so I get to kill to birds with one stone here!!
Dr. Alksne’s speech was “What To Do When The Surgery Fails”
DEALING WITH THE INCONVIENENT TRUTH ABOUT SURGERY FOR TN
You need to be aware in advance of the failure rates of all the procedures. I think that we all go out there to find
the answer that is going to take our TN away forever and that it will be done correctly the first time. There are
times that a compression can be missed if there is more than one. If you happen to get into an auto accident in the
first couple of week of an MVD, the cushion can be bumped out of place and the doctor would have to go back in to
correct it. Any type of head injury within the first couple of weeks can cause the cushion to come out of place. It
takes at least a couple of weeks for the webbing to grow around the cushion and artery in order for the cushion to
stay in place.
No Procedure is 100% effective. MVD has a 15 - 20 % failure over time. The SRS (Stereotactic Radio-Surgery) has a
50 % failure over time and any of the needle procedures have a 50 - 70 % failure over time.
The gamma knife works by a process called Stereotactic radiosurgery, (SRS) which uses multiple beams of radiation
converging in three dimensions to focus precisely on a small volume, such as a tumor, permitting intense doses of
radiation to be delivered to that volume safely.
Discuss with your Neurosurgeon prior to the procedure: Since there are a few different kinds of procedures out
there that may or may not work for you, you need to go over this with the doctor so that you both can decide what
is best for you and which procedure, if any, you are most comfortable with doing. People want to get off the
medications because of the side effects and never have to go back on them. If one procedure fails, you can go back
to the Neurosurgeon and discuss what to do next.
One of the things that I, myself, heard at the conference was to ask the doctor, “How many procedures have you
done correctly?” Of course any doctor would never tell you he has never had any failures. I asked Dr. Alksne what
his response to that was and he said to ask, “How many have you done this year?” If he says, “Three, leave and
go someplace else.”
Have a Plan for What to do if Procedure Fails…. I know that this sounds scary, but it’s important. There are people
that go for years with compression of the Trigeminal Nerve and after about 5-7 years the percentage of an MVD
working goes down.
Recognize that if you do Not Have Classic TN the failure rate is higher: There are classic signs of TN. Tegretol works
right away, you remember exactly when it first started, it goes into remission and there is an electrical shock feeling
that comes from nowhere.
Dr. Alksne’s main point was about the "Bell shaped curve", is that nothing effects everyone the same way. There
are some big winners, some losers, but the majority are somewhere in the middle! A lot of the discussion revolved
around the mechanism of TN.
Dr. Alksne tried to explain that even though we know that either a vessel or MS can cause TN, we don't know why it
comes and goes spontaneously, how the anti-epileptic medicines stop it and how the vessel causes it or why the
SRS stops it! On the left side at the start of the Curve would be those who have not had surgery and on the right
side would be those people who have had surgery and it failed. The lines in the middle on either side of the Curve
are those who have had surgery.
Have a Plan for What to do if Procedure Fails…. I know that this sounds scary, but it’s important. There are people
that go for years with compression of the Trigeminal Nerve and after about 5-7 years the percentage of an MVD
working goes down.
What to do if surgery fails……. OPTIONS AVAILABLE:
You may have to resume your medications if you don’t want to be in pain. TN may respond to a lower dose after a
surgical procedure and then slowly try going off it all together.
You may have to repeat the procedure. Find out how long you have to wait after a SRS. Consider a different TN
procedure. Most of all…….
Don’t Give Up!!! Talk With Your Doctors! Explore Your Options!
A Story from one of our TN members
After going through my second MVD on May 4th, 2006 I felt that I should tell you my story.
It was exactly 11 yrs to the day that my pain came back. I had dental work done on my right side of the face in
December 2005. Only a few days after the work was completed the pain came back.
I did not have to go and see a specialist this time, because I already knew the signs. My name is Debbie Goldstein. I
am a mother of two grown kids. My son Scott is 21 and will graduate in May from Rutgers in NJ and my 18 year old
daughter Lauren is going to American University in Washington, DC. Both of my kids already watched me experience
the pain that I had gone through with having Trigeminal Neuralgia.
I called Dr. Peter Jannetta's office right away to schedule my surgery. I did not want to have to take medication and
be out of it mentally like I was the first time. When I spoke to Ann (his surgical nurse) she had told me to first
contact my Neurologist. I did and he put me on a high dose of Topamax. I was on it for only 4 months before I went
to have my second MVD.
On May 4th my life started again without the stress of waiting for that electric jolt of electricity going through my
body. It has been 5 months since my surgery. I only have numbness from my right eye down to my left lip and
tongue. I guess if this is what I have to live with so be it!
My biggest fear is going to the dentist (which I have not gone to since January 2006). I only can hope that my pain
will stay away! Dr. Peter Jannetta still has hands of gold. He is a wonderful neurosurgeon and I would highly
recommend him to anyone who is having TN pain. I only hope that I helped someone with my story.
Debbie Goldstein
That is most people’s fear, going to the dentist.….Cherie Sato
How To Be Prepared When First Going To The Neurologist
Be prepared! The more organized you are prior to your appointment, the more beneficial the appointment will be
for both you and your Health Care Provider.
Bring a notebook with you to your appointment with the following information in it about your face pain and be
prepared to discuss these topics with your HCP:
1. Give a clear and concise description of your pain including
Onset: When did the pain begin and how long did it last? Has the pain recurred? If so, how long after the initial
episode did it recur? How often is the pain occurring now?
Location: Point to where on your face does the pain start and does it spread. If it does spread- where?
Character: What does the pain feel like? Is it sharp, electrical, burning, dull, throbbing. Is it constant or
episodic? Are there specific triggers to your pain? What makes it better? What makes it worse?
Severity: Is your pain mild, moderate, severe, or incapacitating? Has the severity changed over time?
2. List the medications that you are currently taking for your face pain including
Dosages and administration schedule
Effectiveness
Side effects
3. List the medications you have tried in the past for your face pain including
Total daily dosages
How long you took the medication
Effectiveness
Reason for discontinuing
4. List all medication allergies and your allergic responses.
5. Medical and Surgical history
List concurrent medical problems
List prior medical problems, surgical procedures, and dental issues and procedures.
6. List evaluations and treatments by other HCP to date, and outcomes:
Bring copies of prior imaging studies (MRI, CT scan, X-rays) and reports
Bring copies of consultations, treatment and/or operative procedure reports
Did any procedures/treatments help?
If so, for how long?
7. Share your views on what you think is causing your pain
8. Ask, “Do you think I have Trigeminal Neuralgia”?
Why or why not?
9. Ask about treatment options available to treat your specific face pain
Medications
Surgery
Complementary/Alternative
10. Inquire about the health care provider’s specific medical and/or surgical experience in treating patients with
Trigeminal neuralgia:
Do you specialize in treating patients with Trigeminal neuralgia and/or face pain?
How many patients with TN do you see each year?
What diagnostic tools and treatments for TN are available at your institution?
What treatment option (s) do you recommend for my pain and why?
What are the pros and cons of each surgical procedure for treating my TN?
What is the success rate of each procedure in your hands?
What is the complication rate of each procedure in your hands?
If I wanted a second opinion regarding my diagnosis and/or treatment options, who would you recommend I see?
The above section is off of the TNA website. I did this because some people do not have computers……..Cherie Sato
