Patients who do not live nearby may come for a two or three week stay. You will first need to discuss with your doctor if he or she will be willing to continue medications that we begin. These may or may not include the following:
ketamine
naltrexone low dose or ultra low dose
dextromethorphan (long acting)
memantine high dose – research in France has shown it may work for pain, exceeds the FDA approved 20 mg/day dose
lamotrigine
They are not magic bullets, not cures. Experience comes in how and when to time the use of these medications to minimize risk of side effects and “clamp” pain and/or major depression. Thankfully, I do have patients whose “intractable” pain is in remission. Intractable means there has been no response to opioids or other medications or combinations tried so far. Where is the research on rational polypharmacy?
Medications that I use are based on my focus on neuropharmacology, not on injections and spinal cord stimulators which often have already been tried and failed to help.
Bear in mind, doctors who do not use these medications may be unwilling to continue them. Some specialists limit their practice to procedures, others do not specialize in neuropharmacology. If that is the case, you may need to return every month until your condition goes into remission or stabilizes. Most of my patients are complex and have usually been tried on a long list of medications and interventions that failed to help.
You can use the search function on my website to read about some of the medications I prescribe or case studies, particularly note the articles posted May 26, 2009, for some of these medications and the science of glia and inflammation that is present in chronic pain or in major depression.
There is not a doctor on the planet who can predict what anyone’s response to treatment will be. If they do, you should avoid them for dishonest practices.
I cannot speculate what percentage of patients would be helped by my approach. To do that, you would need to compare one person’s pain with another – no such standardized comparison exists.
Treatment and outcomes are individualized for every person with pain. Each person has a different pain threshold. Some lack a chromosome and have difficulty metabolizing medications.
I am generally available to my patients Pacific Standard Time afternoons, evenings, weekends and holidays. I am not in the office on Tuesdays though I may otherwise be in meetings or in the hospital.
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I do not recommend spinal cord stimulators because:
1. Most important, there are no long term studies showing lasting benefit;
2. they may cause complications, example infection, paralysis, migration of the device or the leads, or new pain and scarring at the site of the external box, tethering to the cord itself – this prevents removal;
3. for the rest of your life, you will never be able to have an MRI scan once the leads are in place, regardless of whether you have cancer or stroke;
4. there may be other ways to relieve intractable pain. Consider trying them first.
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Recomended stay: Long distance patients should plan on staying nearby for at least two weeks, in some cases three weeks, and bring a friend or family member for at least the first week, preferably longer. We cover a vast amount of information and it is difficult for anyone to grasp all at once, especially those in pain or those who may be experiencing side effects.
Bring a blood pressure cuff. It may be needed the first few days, depending on which medication we try.
I will need pertinent past medical records that your doctors will need to fax to my office. The past records I require are outlined in the Release for Medical Records. That is in the FORMS section at the top of this website.
You will need to bring with you — do NOT fax – the completed forms for new patients as detailed in the FORMS section, at top of this website.
Do bring me copies of the Release for Medical Records that you sent to your doctor. We may need to urgently fax them again once you arrive. I cannot see you without records.
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Cost depends upon how much time is needed at each visit and how many visits are made during the first two weeks. Insurers do not reimburse for record reviews, reports and extended telephonic conversations that are billed separately. Brief conversations are always available to my patients at no fee.
My patients tend to be complex. I need to know those complexities in order to avoid repeating problems or failures of treatment that arose for you in the past.
It is essential to enlist the help of your doctor before you plan to see me. After returning home, you may need to return to my office every 4 weeks for a few months until your local doctors and/or pain specialists can continue your care. I do not have a license to practice medicine outside California. Some doctors are unfamiliar with these medications and would not be willing to use them which is why patients have come from long distance for care.
I work in a team approach that includes a Psychologist, Physical Therapist, and, when indicated, a Psychiatrist, Addictionologist, Anesthesiologist and/or Rheumatologist. We are all independenet solo practitioners with no financial ties to each other. I have chosen each person based upon their expertise.
I may obtain some chemistry studies and a drug screen. Those studies are done by outside labs. I have no ownership in them and I do not sell products.
Patients who have had issues with substance abuse including alcoholism must let me know well in advance.
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Payment is required in full at the time of visit. I do not accept credit card payments or PPO insurance such as Blue Cross, Blue Shield, Aetna. As a courtesy, visits are electronically billed and all PPO insurers can reimburse you directly though I am not on their panel.
I accept Medicare but Medicare does not reimburse for prolonged office visits that are often required for complex histories and complex medical regimens that we will begin. Experience with long distance patients has shown they require extended time. Medicare does not allow for that time, thus you would be required to remain nearby as long as needed to provide you with information and medication you may require.
Some HMO’s may be willing to refer you for care but are unlikely to allow for prolonged evaluations. Your primary care provider would need to write to them on your behalf for special arrangements.
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Travel Assistance
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Mercy Medical Airlift is a charitable medical airlift system that may be able to offer transportation.
National Patient Travel Center provides information about all forms of charitable, long-distance medical air transportation.
American Airlines offers programs for kids with medical needs and may have miles for adults that fliers have donated.
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Lodging
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Find and book cheap flights, hotels, vacations and rental cars with Kayak.com. Using Kayak, one of my patients was able to find expensive hotel rooms for less than $100 per night.
The first three below have fully-equipped kitchenettes and complimentary high-speed Internet. Ask if they offer discounts for Scripps Memorial Hospital and free shuttle.
Hyatt Summerfield/Sorrento Mesa, 10044 Pacific Mesa Blvd, San Diego CA, 92121, 858-597-0500. Large suites are single story, pets allowed.
The Marriott’s Residence Inn San Diego/La Jolla on Gilman Avenue, telephone 858-587-1770, 800-331-3131. Large suites are two story. Walking distance to 25 restaurants and movie theaters.
The Marriott’s Residence Inn/Sorrento Mesa, 5995 Pacific Mesa Ct, San Diego CA 92121, 858-552-9100. Large suites are single story, pets allowed.
Hyatt Regency La Jolla room rates compare to Marriott’s, restaurants just outside the lobby. Walking distance to 25 restaurants and movie theaters. Telephone 800-233-1234 or 858-552-1234.
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I wish you a peaceful and happy stay and warm regards. If there is any way I can be of help, please let me know.
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Return to home page: Welcome to my Weblog on Pain Management!
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06/25/2010 at 8:12 am
Thanks for your honesty and information on your treatment protocol. I found your insite into the pain experience very insiteful as well. Interesting theories. MY PM group would not comply with the meds suggested. The seem intent on the SCS as a cure for most pain issues. If I knew I would get good follow up, I would love to work with you. Thanks for the input. Fondly,
Suzy Doehler
07/09/2010 at 12:49 am
It is unfortunate not to try everything possible short of spinal cord stimulators (SCS).
And it is sad that many doctors fail to advise patients that once the stimulator leads are in place, the patient can never have an MRI in future, even if they have cancer or stroke. That could be a deadly serious handicap. The device might be removed, but the permanent metal leads can never be removed from the cord.
The Chairman of our Pain Service at Scripps Memorial is Harvard trained in anesthesia pain. Since pumps and stimulators came on the market, he has been fully qualified to place them. But he does not do that, nor does he refer patients for them because there are no long term studies that show their efficacy. By long term I mean five year studies. Several of my patients had stimulators offered to them 9 or 10 years ago. Thankfully their pain is better controlled now, and some are pain free off of opioids. Other patients I have seen were in crisis or with complications within days or weeks of the placement of stimulator leads. Obviously, I tend to see the failures, not the good results.
Medtronic needs to fund a five year study. It is too important to avoid doing that. It should be a federal mandate for devices.
01/09/2011 at 6:13 am
Dr Sajben
I agree wholeheartedly on your thoughts about the SCS. Can you tell me how you feel about a short term epidural catheter (2-4wks) for RSD in the right arm? I am unsure as to whether this would cause any further spread or if the risk of infection is too great.
Thank you
01/15/2011 at 6:10 pm
Some individuals who have CRPS/RSD find that it began or became triggered by a flu shot or a therapeutic injection. One publication in 2009 said the most common trigger for this syndrome is phlebotomy, i.e. a needle stick to draw blood.
It may be helpful, but no one can predict the risk. Infection is doubtful to be a major issue unless the person is immunosuppressed. Best of luck.
01/16/2011 at 5:52 am
Thank you so much for your reply. I have printed up your website in the hopes her doctor in NY will be interested in consulting with you. RSD is a terrible disease and it is so wonderful to read about a potential medication combo to help relieve pain.
03/25/2011 at 5:17 pm
Dear Dr. Sajben,
We wish we never heard the words “you may have RSD”. My husband of 40+ years had a simple RT ankle sprain at work in April 2007. The sprain healed but the pain, swelling, inflammation, and cold foot never went away. Of course, now, we see everything very clearly as in a rear view mirror; but as you go through the weeks, months, and years wondering just what could be wrong it is anything but clear to the untrained observer. He was finally diagnosed by Dr. Kirkpatrick, Tampa FL in October of 2010 and by that time the disorder had spread through his whole body. Both lower legs were so completely impacted that they had blown up 2-3 times the normal size. They were full of red fire, blistering, running with fluid, and some open sores. It was impossible to get on even a sock or slipper. He began to lose grip in the right hand, the upper back from shoulder to shoulder felt to him as if Satan himself was dragging a razor blade rake slowly, ever so slowly, across his skin. A man who was very physically active was becoming barely able to walk. Were it not for a big black puppy I gave him for Christmas 2009, I think he would have stopped moving altogether. Yet each day he would get up 3-4 times and walk the pup the length of 5-6 houses down and back, or walk around the backyard while the pup romped. It was a minor lifesaver in terms of mobility.
Except for the time when his 26 year old brother died suddenly, instantly in a motorcycle accident, I’ve never seen him break down uncontrollably. But this pain would spike, bring him to his knees, into a ball of tears. I would beg him to let me call 911, but he knew if he held on, eventually the spike would come down and he would be able to go on. For months, he “slept” sitting up at the edge of the bed or couch because the pain and swelling made him feel as if he were suffocating when he tried to lay down and the pain in the legs was more bearable in the sit position.
In December of 2010, he underwent high dose Ketamine infusions – 3 days/4 hours per day. The transformation was happening before our very eyes as the swelling and edema began to subside. Within days, he was able to wear shoes and socks. It was a miraculous visual improvement. As the weeks went by he could breathe again. Weight gain that had been increasing exponentially by the day, began to decrease just as dramatically. Truly we can say he has had improvement.
Why then, you must be thinking, am I writing to you. Even though he is improved, he is not out of the woods. His left leg was so impaired that the doctor told him a 4th day of infusion probably would have been beneficial. Also, although his appearance was dramatically improved, the pain in the left leg was relentless. So a couple of weeks ago he underwent another round of Ketamine infusions 4 hrs / 4 days. We cannot say that his pain has reduced – he suffers day in and day out.
I have continued to search the web for information and came across articles on LDN, wound up on your site last week. I then recalled having seen your site many months ago, reading with great interest and saving it for later reference.
I wanted to express to you how much I appreciate your informative articles, what seems to be your extremely personal and genuine approach to your patients, and then let you know how much I valued your article related to your RSD/CRPS patient treated with oral Ketamine, LDN, etc.
It gives me hope that in the right hands, Nickolas may be able to overcome this beast.
Although we live in FL and coming to CA is not possible at this time, I wondered if you would mind if I share your information with Dr Kirkpatrick. At the very least, we think Nickolas may benefit from LDN.
In closing I would like to add that if the physicians who treated him for 3 years had even the slightest knowledge of RSD/CRPS or true interest in the total patient, instead of a body part, he may have been spared such a devastating blow. Nearly everything they did to “fix” him pushed this thing into overdrive. Yet even when it seems hopeless some days…I take courage in the good work I see outside of my immediate sphere, pray for his relief, and keep unwavering faith.
Thank you most sincerely.
Judy
04/01/2011 at 2:57 am
My heart aches for both of you. I wish you lived nearby. I am very excited by the work I have been doing in recent years, especially for those with CRPS. Thank you for your kind words.
I find ketamine has a limited usefulness, but does not “stick.” It may stop working, which is why I continued to search for a better combination. LDN has been astonishing in the results I’ve seen, but again, I stress rational polypharmacy and, alas, admit the inability to predict if any one medication will work, including ketamine. It seems like the combination works very well, but perhaps it is just that I am swayed by the profound responses I have seen in a very few days when we rapidly add the combination in quick order.
The exciting thing to me is that CRPS has the potential to respond quickly and to go into remission no matter how impossibly severe it appears to be. I know of few other chronic conditions like that.
04/01/2011 at 9:24 am
Each time we connect with an individual who understands the nature of this disorder from health providers, to sufferers, or those who are simply interested in learning more about CRPS, it is always such a positive experience. We always learn something new or are enriched by the encounter. Your thoughtful reply is much appreciated.
06/06/2012 at 8:40 am
Dear. Dr. Sabjen,
First, I’d like to thank you for your tireless devotion to the treatment, education & research of RSD/CRPS. The how & why of my journey to the prison sentence I currently serve is no longer important. The damage created by the long list of treatments is a factor however. 20 SGB’s, 1 effective for 5 days, 1 for 5 hours, the other 18-no improvements. Short term Ketamine Infusions, a long term K drip which ended up doing irreversable damage, an SCS that did improve swelling/apprearance on RT upper extremity: but created the worse CRPS area on my entire body (where the leads are tunneled through to meet the battery.) And every every modality in between, including a large pharmacy of medications.
My long winded question is: Considering the 1 time (5 day) success of the SGB, would you recommend RF Lesioning for my case? (I do not have full body RSD but close to that. Every extremity aside from right leg. Also resides in tailbone, ribcage, & most severe at tunnelling area.) My anesthesiologist is recommending RFL.
Oh how I wish to be one of your patients.
Most sincerely,
Kathy Morrow
06/06/2012 at 10:35 pm
Dear Kathy,
I am so sorry to hear this devastating list of treatments that lead to complications worse than the pain you started with. Forgive me for saying that it is unlawful for me to give medical advice without seeing a patient in person and doing a history and physical examination. My heart goes out to you. But I think you know the answer to your question.
05/14/2013 at 6:50 pm
Hello Dr. Sajben and any readers, I am so grateful that I live nearby and have access to your wonderful treatment medically and spiritually. Wonder where I would be with my CRPS if I had not been referred to you 5 years ago? I don’t think it would be pretty but luckily I function at 99.9%. Yeah! Sissy