Hi everyone here on Braintalk 2, It’s me Baerbel and Les.

I don’t know if some of you remember ,I was the one that had posted all of my husbands TN history and MVD surgery result’s under the threat: My husband is going in for MVD.
I been trying to log on to the Brain talk Forum for quite some time now with no luck. What happened?
Through a search Engine I stumbled up onto Braintalk 2 and recognized some of the names.
I sure hope that all of you are doing well and are hopefully pain free by now. Les is doing great , still completely pain free and off all meds.
I am sorry that I have not been more active with everyone that is still suffering. I love to help in any way I can. I will never forget all the help and good thoughts that came from you guys.
I also have some sad news that will explain a little of my inactivity here. My mother that lives in Germany with my Dad has been diagnosed with Colon Cancer and that is were at the moment all my time and energy go to. I am doing a lot of research on my mom’s condition now and hope to find answers in how to beat this thing.
Stay well all of you and I check back here from time to time.
Les send his best wishes to all of you.
Lot’s of love
Baerbel

Hi Baerbel,

I am so glad to hear Les is still pain free! I hope it lasts forever.

I don't think anyone is quite sure what happened to the original Braintalk. Hopefully more and more people will find this one.

I'm sorry to hear about your mother. Good luck, and keep in mind that over 50% of all cancers are cured.

Love,
Jan

Baerbel, I'm so glad you found this site. I still remember how helpful your diary was - following Les through his suffering and then surgery and now, finally, to a pain free life.

I'm sorry to hear of your mother's illness. We will all be thinking of you, and her, and hoping that things go well for you both.

When you have the time and energy do drop in here. As more and more people find this site there will be individuals with questions that you can answer. We're really trying to rebuild the caring community that we knew before. And by the way, I'm sunflower now, I was baywatcher on the old site, I saved that name in case it ever comes back.

My best to you and Les and to your mother as well, Nancy

Hi Baerbel and Les
I'm so happy that les's MVD is holding. Mine is holding as well. I am very disappointed as well that the original BrianTalk is gone. We had posted so much information there. I dont know if it can all be duplicated that easily. I particularily remember one long post you had o there about your experiences and procedures from one doctor to another and the huge decision you had to make going into the MVD on whether or not to cut the nerve if nother was found or not. Information like that for someone suffering with TN and going through the same route is priceless.
I too am sorry to hear about your mother, but knowing a little bit about the type of person you are and how you handled all the decisions and research and recouperation or a patient, I'd say your mom couldnt be in better hands.
Good luck Baerbel and it's great to hear from you
Ella

Hi to you all,
It is so good to hear from you again and thank you all for your kind words regarding my Mom.
I saved Les's diary, so I post it here again.
Talk to you soon
God bless
Baerbel



Les’s 7 year battle with Trigeminal Neuralgia:
For all of our new friends here on the Forum. I want to make sure that you all have enough reading material over the week end.
I kept a diary over the years on Les’s pain , Physicians he had come in contact with and dosage changes in meds. It became in very handy at times when you deal with more than one Physician and sometimes one doesn’t know what the other did.
Les and I want to do as much as we can to help other Patients with TN out there. We are sure that some of you can relate to this and maybe find some help in reading this diary.

Lot’s of love
Baerbel






First of all I like you to know that Les had injured the top of his head by running into the Garage Door on Feb.18th,1999.
He then had his first pain attack on April 11th,1999 , 7 weeks after his incident with the Garage Door which had left quit a big contusion and hematoma on the top of his head.
So far every Doctor that we have seen didn’t think that the injury could be the culprit of Les’s Facial Pain.
And in the end the Doctors were right, it was a huge Artery wrapped around the Trigeminal Nerve that had caused the pain due to the compression.


List of Physician’s that treated Les:

April 22nd,1999 Dr. Adery MD/ Maxi focal Surgeon

Extracted wisdom tooth and molar on upper left maxilla thinking that that was the cause of Les Pain.


April 30th,1999 Dr. White MD Primary Care Physician

Diagnosed Les with Trigeminal Neuralgia !
Started Les on Tegretol 100mg twice per day.

June 3rd,1999 Dr. Ken Wogensen Neurologist
Increased Tegretol to 600mg per day.
Ordered MRI which was done on June 18th,1999. MRI came back negative.
He told Les that his Pain could be physiological and that Les should see a Psychiatrist .
That was the end for us with Dr. Wogensen !

Aug. 20th ,1999 Tegretol increased to 800mg per day by his PCP Dr. White

Sep. 22nd,1999 Tegretol increased to 1000mg per day combined with Neurotin 900mg per day



Dec. 13th, 1999 Dr. Wesley E. Shankland, II, D.D.S.,M.S.,Ph.D.

After reviewing Les Panorama X Ray’s of the maxilla and Mandibular Dr. Shankland discovered some NICO lesions ( Neuralgia Inducing Cavitational Osteonecrosis ) which he remedied. He also extracted the remaining of Les’s Molars on the upper left and bottom.
Unfortunately there was no change in Les’s pain.
We went for a second visit out to Dr. Shankland in 2000 because Dr. Shankland thought that there where more NICO lesions to be removed that could have been the cause of Les’s pain, but again no success in pain relief for Les.


Jan. 2nd, 2001 Dr. Hantman ( Health Care Partners) became our new Primary Care Physician

Referred Les to Dr Stamper


Jan. 2nd, 2001 Dr. Stamper Maxi Facial Surgeon

Ordered CT Scan TMJ (L & R) + Sinuses. CT Scan results: Cyst in right Sinus.

Jan. 7th, 2001 Dr. Hantman referred Les to the Pasadena Rehab Institute for Pain Management with Dr. Ogar, who wanted to wait and see what the Neurologist had to say.
Dr. Hantmann also referred Les to Dr. Girade, new Neurologist

Jan. 17th, 2001 Dr. Girade Neurologist

Increased dosage of Tegretol to 1000mg per day combined with 600mg of Neurontin.
Ordered MRI & MRA. MRI & MRA was done on Jan 30th, 2001 at the Huntington MRI Center
Nothing found compressing the nerve.

Jan. 31st, 2001 Dr. Girade increased the dosage again to 1200mg daily of Tegretol combined with 900mg of Neurontin.

He also wanted a second opinion from his Partner Dr. Spitzer who suffered also from Trigeminal Neuralgia.


Feb. 9th, 2001 Dr. Spitzer Neurologist took over Les’s case
Referred Les to Dr. Giannotta M.D., F.A.C.S.
USC Neurosurgery

Feb. 22nd, 2001 Dr. Giannotta
Gave Les option to have MVD surgery or Gamma Knife.
Wanted Les to see Dr. Petrovich , if Les decided to go for the Gamma Knife procedure.


May 2nd, 2001 Dr. Petrovich, M.D.
Professor and Chairman
Dept. of Radiation Oncology


Advised Les on Gamma Knife surgery.
Les was told that it could take up to a year after the Gamma Knife Surgery before he would feel a difference in his pain or be pain free.



May 10th, 2001 Les under went Gamma Knife Surgery.



May 30th, 2001 Neurontin was increased by Dr. Spitzer to 1800mg per day,
combined with 1200mg of Tegretol.

Dr. Spitzer also advised Les that he could start decreasing his meds if the pain gets less.


In Feb. 2002 Les was finally pain free and off all medication, 9 month post op.


Nov. 12th, 2003
Les experienced his first onset of facial pain again 21month after he had the Gamma Knife.


Nov.17th, 2003
Les started to take Neurontin again 600mg per day.

Dec.3rd,2003
Les combined Neurontin 1200mg with Tegretol 400mg per day.

Nov.12th,2003 Dr. Gomez (Health Care Partners)
Les’s new Primary Care Physician taking over for
Dr. Hantman.

Dr. Gomez referred Les back to Dr. Gionatta Neurosurgeon USC for consultation on second Gamma Knife option since Les by the end of 2004 was on his maximum daily dosage of medication to control his pain. 1200mg of Tegretol combined with 2400mg of Neurontin.

Jan.27th,2005 Dr. Gioanatta Neurosurgeon

Consultation of option for second Gamma Knife.
Dr. Gionatta also referred Les to Dr. Streeter for consultation on second Gamma Knife and possible side effects after second radiation.


Feb or March, 2005
Referral from Dr. Gomez to see Dr. Janjua Neurologist to answer more questions about surgery options.
(Dr. Spitzer is not longer used by Health Care Partners)

Dr. Janjua could not help Les with most of his question she told him that she could only prescribe medication when it comes to Trigeminal Neuralgia.
If cases like Les’s get to complicated and the meds are not sufficient enough any more she would also refer to a Neurosurgeon.


March 18th, 2005 Dr. Streeter
Radiation Oncology in place of Dr. Petrovich


Ordered contrast MRI on 3 Tesla with fine cuts through arteries and 5th cranial Nerve.
MRI was done March 20th,2005.

March 29th, 2005 Dr. Streeter

MRI results again negative. Nothing compressing the Nerve could be found.
Dr. Streeter suggested to see Dr. Merrill D.D.S., M.S. at UCLA Orofacial Pain Practice who specializes also in rare facial pain conditions.
Dr. Streeter advised Les to try any possible treatment other then Gamma Knife or MVD first before under going more surgeries that could leave him with paralyses or permanent numbness to the face.
Or even worse that other procedures could damage the nerve to much that the MVD would have no effect should we decide on that down the road.

June 1st , 2005
As of the present time Les is taking a daily dosage of 1200mg of Tegretol combined with 2400mg of Neurontin.
Les can not afford to even miss one dosage of his medication or his pain becomes unbearable for him to the point that he is unable to speak or eat.

June 8th, 2005
Phone call from Dr. Gomez PCP (Health Care Partners denied second Gamma Knife Surgery and also to have consultation with pain specialist Dr. Merril since he is not on Health Care Partners Group.
Dr. Gomez recommended for Les to see Dr. Janjua Neurologist again to find out what her opinion for Les’s further treatment option would be.


June 10th , 2005
Back to Dr. Janjua Neurologist.
Les’s pain on his current dosage is increasing so Dr. Janjua upped his dosage on the Neurontin from 2400mg to 2800mg combined with 1200mg of Tegretol.
She advised Les that he is maxed out on the daily dosage of Tegretol but could go as high as 4800mg on the Neurontin and that he could increase it himself if he had to do so.
She also told Les that he should go and see the Pain specialist apointed by Health Care Partners and to make sure to get an apointment with Dr. Furdik since he is familiar with Nerve Block injections.
Then she told us to contact the Insurance Company to question them about the denials and in how to go about to get a second opinion if needed.

Aug. 1st , 2005
First apointment with Dr. Furdik Neurologist Pain Mangement with the Pasadena Rehabilitation Institute. Dr. Furdik advised Les of different treatment options for his condition which we through years of batteling with Les’s condition were all familiar with. He told us that Nerve Block injections are all temporay fixes and that they usually do not last long. He questioned the denial of the second Gamma Knife since we did have success with it the first time.
Since Les has such side effect’s from the Tegretol he wanted Les to try a newer Drug Trileptal to see if that would help with Les’s pain.
Dr Furdik gave Les a prescription for Trileptal starting at 600mg twice per day. He told Les that he can combine Trileptal with Neurontin but under no circumstances to combine it with Tegretol.
He told us to call him to let him know how the drug is working out for Les and to make another apointment within 3 weeks.


Les waited until the up coming weekend to start with his new medication ,reason for that was that he did not want to expierement with a new drug during his working hours.

First day of Trileptal started on Sat. Aug. 6th, 2005.
Within 2 hours after taking the new drug Les’s pain started to increase gradually. He continued taking his medication as prescribed until he told me on Tue. Aug 9th, 2005 to contact Dr. Furdik the pain had now become unbearable and Les had a hard time making it through out the day trying to converse with people at his place of employment.

I made a phone call to reach Dr. Furdik to see what to do next and I was told by his Medical Assistant Cindy that Dr. Furdik is only in the office at the Pasadena Facility on Monday‘s. She gave me a number (626)403-6488 to the Pasadena Surgery Center where they could try to locate Dr.Furdik. I spoke to a person at the Surgery Center that told me that she would relate the message to Dr. Furdik after he was out of surgery and that she would have Cindy call me back with further instructions.
Cindy called me back late afternoon and told me that they could not get a hold of the Doctor and there was nothing that they could do about Les’s problem for today.

Wed. Aug. 10th, 2005 Les was desperate by now and had done some research himself on Trileptal to see what the maximum dosage would be. He found out that the max. would be 2400 mg per day.
Les then took it up to himself to increase the Trileptal to 900mg twice daily to see if that would ease his pain since there was no way in getting a hold of his Doctor he had no other option, he could not talk nor could he eat or drink without setting of the pain.

I called Cindy back to see if they could please get a hold of Dr. Furdik she said that she would try. This time he was at a differend facilty and to make a long story short they coul’nd get a hold of him on Wed. Aug. 10th. 2005 either to get an answer in what to increase Les’s medication to get him more confertable.

Thur. Aug.11th, 2005
Again I called to reach Dr. Furdik or to find out if he gotten any of the messages by now in what to do next with Les. Again no luck, until later that afternoon when Cindy called me to inform me that she had finally spoken to Dr. Furdik and that he wants to increase the Trileptal to 900mg twice per day. She also told me that I could come in to pick up some 300mg samples to take in combination of what he has.
I told Cindy then that Les had started already on 900mg twice per day by breaking one pill in half and that the 1800mg per day are still not making a difference in his pain.

Cindy got then all upset and told me that a patient should never take matters in his own hands when it comes to increasing medications. She told me that Les went against Dr.’s orders and that he could be dropped as a patient by playing with narcotics himself.
I informed Cindy that my husband is no drug addict and that he would like nothing more then to be off the medication if he could.
I also informed her that Les would have never taking matters in his own hands if he could have gotten a hold of his Doctor for the last three days. Les was very desperate and in a lot of pain.

Cindy said then that she needed to run the information by Dr. Furdik to see what he wanted to do next and she would call me back.
She called back within 10 minutes and informed me that Dr. Furdik said that Les could go up to 2400mg max on his daily dosage of Trileptal.
I asked her then if she could please call the Pharmacy and reorder some more of the Trileptal since with his increased dosage at a QTY: 60 at 2400mg per day he run out of meds fairly soon.
I gave Cindy the Pharmacy number and she said that she would call to reorder.

Aug. 22nd,2005
I called Ride Aid Pharmacy to find out if Cindy did call in for Les’s meds since he was now down to 4 pills enough for his PM and AM dosage before he was out.
The Pharmasist informed me that nobody had called in for Les’s meds from Dr. Furdik’s Office and that his next refill would not be good until Aug.29th ,2005.
I told the pharmasist that the Dr. had increased his medicattion and that Les has run out now.
The Pharmasist said he would call there office right now and call me back afterwards.
He did and told me that he left a message on the answering mashine.
So did I and so did Les in between the Pharmacy , Les and myself we left about 7 messages for Cindy or anybody to please get back at us to refill Les’s meds. Nobody ever called back.
Fianaly at about 4:50PM Les had Cindy paged and actualy got her on the phone , he told her that he needed a refill on his meds and she told him that he should not have waited so long to get a refill.
She also told Les that she needed the number to his Pharmacy ( which by the way I had already left on the numerous messages and so did the Pharmacist).
Les told her that he had to call her back with the number within 2 minutes. He hang up with Cindy and called me to get the number for the Pharmacy.
He then called back to the Pasaden Rehab Institute to give Cindy the number and he was placed on hold for about 5 minutes by the time somebody fianaly noticed that there was somebody on hold Cindy had left for the day.


That was so far our experience with the Pain Mangement for Les.

Aug. 22nd . 2005

FILED A FORMEL COMPLAINED WITH HEALTH CARE PARTNERS PATIENT SUPPORT
KATHY AT (310)793-5494

Aug. 23rd. 2005
Upon my husbands request Kathy took over in making the phone calls to the Pasadena Facility to get his priscription filled and she succeeded.


Oct.10th. 2005
Follow up with Dr. Furdik. Told Les that he did send request to Health Care Partners for Les to see Dr. Merrill Pain Secialist at UCLA.
Ordered second Blood test and did not change anything on Les’s medication.
Appointment in 4 weks for another follow up.

Oct.11th.2005
Phone call from Dr. Furdik . Blood test back normal. Slight elevated Blood glucose level.


Nov. 7th, 2005
Follow up with Dr. Furdik. Les’s pain is getting worse and Dr. Furdik told Les that he can go up to 3600 mg on the Neurontin combined with the 2400mg of Trileptol. If that does not work for him to then also add Bachlofen which he gave Les a prescription for.
Les is now ready to have the MVD surgery and asked Dr. Furdik to set things up for it.
Health Care Partners had sent Les another referral to a see Dr. Stamper (Maxi Facial Surgeon) which is of no help to us since we already been down this road in Jan of 2001.
Dr. Stamper could not help Les at all but adviced him to see a Neurologist.


Nov. 2005 - Jan. 2006
Pain level increased with Les despite all the combined Medications that he is taken at the present time.
He has again trigger points that are very bad first thing in the morning until his meds start to work.
The medication does not give him relief for longer periods any more and he has to take same sooner then befor to get relief through out the day that he is able to talk.


Feb. 23rd , 2006

Appointment with Neurosurgon Dr.Gionatta to discuss possible MVD surgery. Dr.Gionnatta warned us that if no compression is found during MVD, that the only option left would be to partially cutting the nerve. End result of that would leave Les with permanent numbness in portion of his face. A trade off Les is willing to take.

MVD scheduled for March 10th, 2006

March 3rd, 2006

Pre op apointment with Dr. Gomez PCP
Lab work , EKG and chest X- Ray

March 10th , 2006

MVD surgery at USC Universty Hospital at 3pm.
Dr. Gionnatta found a large Artery compressing the Nerve, the artery was lifted off the Nerve and the Nerve was patted with a Teflon sponge to protect it from further compression. The craniotomy was covered with a Titanium plate.
Les woke up from the anesthesia PAIN FREE.





Plan to taper of meds :




Pre op : 2400mg Trileptal - 2 AM , 2 PM
3600mg Neurontin - 2AM , 2 midday , 2 PM
20mg Bachlofen - 1 midday


Post op :
Hospital March 11th,: 2400 mg Trileptal - 2 AM , 2PM
2400 mg Neurontin - 2 AM , 2 PM
Stopped Bachlofen and afternoon dosage of Neurontin


March 13th,discharged: 1800 mg Trileptal - 1AM , 2 PM
2400mg Neurontin - 2AM , 2 PM


Saturday March 18th,: 1200mg Trileptal - 1 AM ,1 PM
1200mg Neurontin - 1 AM ,1 PM


Thursday March 23rd,: 900mg Trileptal - 1 Trileptal AM with ½ Neurontin
900mg Neurontin - 1 Neurontin PM with ½ Trileptal


Thursday March 30th,: 600mg Trileptal - ½ Trileptal Am with ½ Neurontin
600mg Neurontin - same PM

Call DR.Gomez for prescription : Trileptal 150mg and Neurontin 100mg ,QT.:30
Direct Voice Mail626)403-4013

Thursday April 6th,: 300mg Trileptal - 150 mg AM , 150 mg PM
200mg Neurontin - 100 mg AM , 100 mg PM


Thursday April 13th,: 150mg Trileptal
100mg Neurontin for 5 days then cut out Neurontin and
continue Trileptal every other day for 5 days and stop.








March 24th , 2006

Appointment at USC with Dawn Fishback Dr. Gionnattas Assistant for suture removal.
Everything looks great and Les is recovering nicely.



April 6th, 2006

Follow up apointement with Dr. Gionnatta Neuro Surgeon. Dr. Gionnatta told Les that he would have less than a 2% chance of ever getting TN back after his MVD.
Les is completely pain free and taperd down on his meds now to 300mg Trilepetal combined with 200mg of Neurontin. He will be home for another 10days to build up his stamina before reporting back to work. Still no strenuous exercises or lifting more than 20lbs, just walks.
His 7 year battle with Trigeminal Neuralgia has finally come to an end.