[tmullen]

i have recently started seeing him, and have an appointment booked for a SCS trial. has anybody been a patient of his?

[sk8ter]

If you are in so. Calif. I would suggest the most knowledgable man on RSD in So. Cal is Dr. Richeimer at USC Pain Clinic. He has fundraisers for RSD and is a very compassionate man. He also takes insurance.
Bless You,
Wendy

[tmullen]

thank you so much! have you had an experience with him? or what have you heard? have a great day!

[fmichael]

Hi there -

Dr. Richeimer has been my doctor since 2003, first as a consultant and then as my primary pm following the announced retirement of my neurolgist of many years in January, 2008 or so.

He's compassionate, brilliant and utterly self-effacing, which is an unusual combination. The only draw-back is that he's stretched pretty thin, and can only see you every 60 - 90 days. That said, his office is great about refilling prescriptions and in the event of any crisis, either he or his clinical fellow will get back to you within hours.

The only thing I know about Dr. Wallace, is that he's been doing some work of late with a relatively low dose of ziconotide (Prialt) for chronic pain - the FDA approved dosing, while serving as a consultant to the manufacturer: which often means that the researcher is charged with bringing in patients to the study with as few other illnesses as possible, so as to minimize the chance for any untoward side-effects that would have to be reported to the FDA. See, "Intrathecal ziconotide for severe chronic pain: safety and tolerability results of an open-label, long-term trial." Wallace MS, Rauck R, Fisher R, Charapata SG, Ellis D, Dissanayake S; Ziconotide 98-022 Study Group, Anesth Analg. 2008 Feb;106(2):628-37, free full text at http://www.anesthesia-analgesia.org/...full/106/2/628

Center for Pain Medicine, University of California, San Diego, La Jolla, California 92093, USA. mswallace@ucsd.edu

ABSTRACT

BACKGROUND: Ziconotide is a non-opioid drug indicated for management of severe chronic pain in patients for whom intrathecal (IT) therapy is warranted and who are intolerant of or refractory to other treatments.

METHODS: Six-hundred and forty-four patients with severe chronic pain participated in this open-label, multicenter study. Ziconotide titration was followed by long-term infusion. Efficacy assessments included the Visual Analog Scale of Pain Intensity. Safety was assessed via adverse events (AEs), vital signs, and routine laboratory values.

RESULTS: One-hundred and nineteen patients received ziconotide for > or = 360 days; total exposure was 350.9 patient years. Median duration of ziconotide therapy was 67.5 days (range, 1.2-1215.5 days); mean dose at last infusion was 8.4 microg/d (range, 0.048-240.0 microg/d). Median Visual Analog Scale of Pain Intensity scores at baseline, month 1, and the last available observation up to month 2 were 76 mm (range, 4-100 mm), 68 mm (range, 0-100 mm), and 73 mm (range, 0-100 mm), respectively. Most patients (99.7%) experienced > or = 1 AE. Most AEs were of mild (43.5%) or moderate (42.3%) severity; 58.6% of AEs were considered unrelated to ziconotide. The most commonly reported AEs (> or = 25% of patients) included nausea, dizziness, headache, confusion, pain, somnolence, and memory impairment. Clinically significant abnormalities (> 3 times the upper limit of normal) in creatine kinase levels were reported in 0.9% of patients at baseline, 5.7% at month 1, and 3.4% at ziconotide discontinuation. No drug-related deaths, IT granulomas, or permanent adverse sequelae occurred with ziconotide therapy.

CONCLUSION: We conclude that long-term IT ziconotide is an option for patients with severe, refractory chronic pain.

PMID: 18227325 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum

AND

"Long-term intrathecal ziconotide for chronic pain: an open-label study," Webster LR, Fisher R, Charapata S, Wallace MS, J Pain Symptom Manage. 2009 Mar;37(3):363-72.

ABSTRACT

This open-label multicenter study evaluated the long-term safety and efficacy of intrathecal ziconotide and included 78 patients with chronic pain who had completed one of two previous ziconotide clinical trials. Each patient's initial ziconotide dose was based on his or her dose from the study of origin and was adjusted as necessary on the basis of adverse events and analgesic effect. The median ziconotide dose was 6.48 mcg/day (range, 0.00-120.00 mcg/day) at the Initial Visit and ranged from 5.52 to 7.20 mcg/day across all study visits. The most commonly reported new adverse events that were considered ziconotide related were memory impairment (11.3%); dizziness, nystagmus, and speech disorder (8.5% each); nervousness and somnolence (7.0% each); and abnormal gait (5.6%). There was no evidence of increased adverse event incidence at higher cumulative ziconotide doses. Elevations in creatine kinase were noted, but the proportion of patients with creatine kinase elevations did not change from the Initial Visit to the Termination Visit (4.1% each). Stable mean Visual Analog Scale of Pain Intensity scores during the three years of the study suggested no evidence of increased pain intensity with increased duration of ziconotide exposure. Long-term treatment with ziconotide appeared to be well tolerated and effective in patients whose response to ziconotide and ability to tolerate the drug had been previously demonstrated.

PMID: 18715748 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum

This, while the real action with CRPS and Prialt appears to be at significantly higher dosages. See, "Intrathecal ziconotide for complex regional pain syndrome: seven case reports," Kapural L, Lokey K, Leong MS, Fiekowsky S, Stanton-Hicks M, Sapienza-Crawford AJ, Webster LR, Pain Pract. 2009 Jul-Aug;9(4):296-303.

ABSTRACT

Ziconotide is a nonopioid analgesic currently indicated as monotherapy, but frequently used in combination with opioids, for the management of severe chronic pain in patients for whom intrathecal (IT) therapy is warranted and who are intolerant of, or whose pain is, refractory to other treatments. There is a paucity of information regarding ziconotide use in patients with complex regional pain syndrome (CRPS). Seven cases in which IT ziconotide was used in patients with CRPS were analyzed. All patients (4 male, 3 female; age range, 14 to 52 years) had experienced inadequate pain relief with multiple conventional and interventional treatments. Three patients received ziconotide monotherapy exclusively; 4 patients received ziconotide monotherapy initially, then combination IT therapy. The mean ziconotide dose was 5.2 mcg/d (range, 0.5 to 13 mcg/d) at initiation and 24.7 mcg/d (range, 0.06 to 146 mcg/d) at the last available assessment. The mean duration of ziconotide therapy was 3.1 years (range, 26 days to 8 years). At ziconotide initiation, the mean visual analog scale (VAS) score was 89.3 mm (range, 75 to 100 mm); VAS scores decreased by a mean of 47.5% (range, 5% to 100%) at last assessment. Of the 5 patients who experienced substantial improvement in pain, edema, skin abnormalities, and/or mobility with ziconotide therapy, 2 have discontinued ziconotide and are pain free. Another patient experienced marked reversal of both edema and advanced skin trophic changes. Adverse events included urinary retention, depression, anxiety, and hallucinations. Adverse events generally resolved spontaneously, with treatment, or with ziconotide discontinuation/dose reduction. Although further studies are required, ziconotide holds promise as an effective treatment for CRPS.

PMID: 19500276 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum

AND

"An Effective Treatment of Severe Complex Regional Pain Syndrome Type 1 in Child Using High Doses of Intrathecal Ziconotide (Letter to the Editor)," Stanton-Hicks MD, Kapural L, J Pain Symptom Manage. 2006;6:509-510 free full text (including some amazing before and after pictures) at http://www.rsds.org/2/library/articl...32_6_pg509.pdf

That said, I'm not sure how significant that distinction ("high" vs. "low dose" Prialt) is, where Lynn Webster M.D., Medical Director of the Lifetree Clinical Research and Pain Clinic, Salt Lake City UT, was listed as an author of both one of the "high" and "low dose" papers. (For an article Dr. Webster wrote four years ago in the RSDSA Review for the CRPS community on the use of Prialt in the treatment of CRPS, pre-dating Dr. Stanton-Hicks' case report, above, see, "Ziconotide in Complex Regional Pain Syndrome," October 7, 2005 at http://www.rsds.org/3/research/Ziconotide.htm) That, and I know that experimental therapies are only available where there is enough money, grant or otherwise to justify taking a year or more to push through a study proposal before the hospital's Insitutional Review Board. No money, no study. The one exception I had with Dr. Richeimer was in a small "proto-study" of the use of a powerful intestinal antibiotic to knock out a particular type of bacterial fuana that thrived in the gut on opioids, and itself produced neurotoxins. (While the treatment worked, it's my understanding that the NIH grant in support of a larger study never came through.)

Other people may have direct experience with Dr. Wallace, so I would keep asking around. That said, I don't believe you could go wrong with Dr. Richeimer. I've spoken to a number of CRPS patients in LA who've have seen a lot of doctors (including one guy who takes virtually no insurance can only be described as a legend in his own mind) and it's universally agreed that Dr. Richeimer (Chief of Pain Medicine, USC; Director, USC Pain Center: Assoc. Prof Psychiatry and Anesthesiology, USC) is the best overall pm doc in LA.

I hope this is helpful.

Mike

[Cake]

Thanks Mike for bringing this to my attention. I remember this snail venom/medication was first talked about on here a few years ago, so it's interesting to see how the research has been progressing. I'll have to look into it and ask my pain specialist about it. xx

[Lynns409]

Originally Posted by tmullen

i have recently started seeing him, and have an appointment booked for a SCS trial. has anybody been a patient of his?

Hi there... Havent been around here in a while, but perhaps it is providence that I saw your message. I was a patient at UCSD for 8 years- I went to school there. Dr. Ahadian was my doctor and he was/is absolutely wonderful. (I'm having surgery there to revise my SCS in January, even though I now live in the Santa Barbara area.) Dr. Wallace is absolutely terrible. He almost killed me.

While I was a patient of Dr. Ahadian's, Wallace was running a medication trial for RSD. I was desperate so I signed up. The medication is called lenalenomide, and it is a cousin of thalidomide. Both of these are known thrombolytic agents. I had been on the medication for 6 months when I had 6 massive pulmonary emboli and nearly died. I was in the hospital for a week. Dr. Wallace actually told me that he was surprised that I lived.

They knew that this medication could cause, and often causes, blood clots. Yet they did not put me on any sort of preventative treatment. Later on, when they continued the study, they told other patients that the only problems that had been caused by this drug had been "brought on by the patient." How on earth could I have caused major blood clots? I have never smoked, and I was not on birth control.

I now have a permanent blood clotting disorder and will be on coumadin, which is essentially rat poison, for the rest of my life. I cannot have children. He never even apologized to me.

The esteemed Dr. Wallace also told me that my only problem was that I didn't exercise enough. (I was 20, 5'6'' and weighed only 110 lbs.) When I told him that it hurt to even walk, let alone exercise, he informed me that I "needed to push pass the pain and get over it." This is a supposed pain doctor.

See Dr. Ahadian or even Dr. Leung. Ahadian is sympathetic, has a great bedside manner, and is incredibly smart. He put in my SCS and is willing to take leaps to help his patients. And he always remembers who you are and what you do.

I hope that this helps you, and if you have any questions, feel free to ask or email me.

Lynn

[fmichael]

Thanks Lynn. I can't believe the horrow that was visited on you, one so many levels.

As an aside, experiences such as your your own may be what's holding up the publication of the lenalenomide study, well over two years after it was scheduled to be completed.

Mike

[Poko]

Originally Posted by Lynns409

Hi there... Havent been around here in a while, but perhaps it is providence that I saw your message. I was a patient at UCSD for 8 years- I went to school there. Dr. Ahadian was my doctor and he was/is absolutely wonderful. (I'm having surgery there to revise my SCS in January, even though I now live in the Santa Barbara area.) Dr. Wallace is absolutely terrible. He almost killed me.

While I was a patient of Dr. Ahadian's, Wallace was running a medication trial for RSD. I was desperate so I signed up. The medication is called lenalenomide, and it is a cousin of thalidomide. Both of these are known thrombolytic agents. I had been on the medication for 6 months when I had 6 massive pulmonary emboli and nearly died. I was in the hospital for a week. Dr. Wallace actually told me that he was surprised that I lived.

They knew that this medication could cause, and often causes, blood clots. Yet they did not put me on any sort of preventative treatment. Later on, when they continued the study, they told other patients that the only problems that had been caused by this drug had been "brought on by the patient." How on earth could I have caused major blood clots? I have never smoked, and I was not on birth control.

I now have a permanent blood clotting disorder and will be on coumadin, which is essentially rat poison, for the rest of my life. I cannot have children. He never even apologized to me.

The esteemed Dr. Wallace also told me that my only problem was that I didn't exercise enough. (I was 20, 5'6'' and weighed only 110 lbs.) When I told him that it hurt to even walk, let alone exercise, he informed me that I "needed to push pass the pain and get over it." This is a supposed pain doctor.

See Dr. Ahadian or even Dr. Leung. Ahadian is sympathetic, has a great bedside manner, and is incredibly smart. He put in my SCS and is willing to take leaps to help his patients. And he always remembers who you are and what you do.

I hope that this helps you, and if you have any questions, feel free to ask or email me.

Lynn

Lynn, sorry to here what happened.
I was on the thalidomide study several years ago and was also on the lenalenomide study about four years ago. I have been taking thalidomide until March 2010... then had a Brainstem stroke from the thrombolytic effect of thalidomide also.
Guess I should have been on a Blood Thinner?
There are risks with any therapy for RSD...
I am now back to square one to find something new that works to control my RSD issues.

Mark

[fmichael]

Originally Posted by Poko

Lynn, sorry to here what happened.
I was on the thalidomide study several years ago and was also on the lenalenomide study about four years ago. I have been taking thalidomide until March 2010... then had a Brainstem stroke from the thrombolytic effect of thalidomide also.
Guess I should have been on a Blood Thinner?
There are risks with any therapy for RSD...
I am now back to square one to find something new that works to control my RSD issues.

Mark

Mark -

Please check your PM box.

Mike