Hi Sandy,

I am so sad right now, this is a whole new game plan. I looked up her meds and two can cause the yellowing and the eye pain. I am taking her in for a checkup tomorrow. She is due for blood work, but unfortunately the PM and the Pediatrician have to talk to see what they want to check out. But, I am putting my foot down tomorrow and demanding a script for the blood work immediately. This is so unfair to everyone with this horrib le disease. I hope that you are doing well, you seem to be.

Love Sandy

Dear Hannah and Sandy -

Your circumstances are as difficult as I can imagine and clearly call for a certain "something else."

That something else may be Ziconotide, venom from a deadly South Pacific snail, which has gotten some attention in the last few years. I believe it's been a while since it's been mentioned and I think it bears repeating now. Please see my post (#12) of October 24, 2009, in the thread Radio Frequency Injections??? thread http://neurotalk.psychcentral.com/sh...d.php?p=582163:

Dear Sarah -

So very sorry you had such a miserable time yesterday.

I am, however, equally troubled by your doctor's suggestions that the only other techniques are "more invasive." This sounds 15 - 20 years out of date, where there exciting research is being done with medications.

If and when you have the energy, I would urge you to read "Outpatient intravenous ketamine for the treatment of complex regional pain syndrome: A double-blind placebo controlled study," Schwartzman RJ, Alexander GM, Grothusen JR, Paylor T, Reichenberger E, Perreault M, Pain 2009 (in press), FREE FULL TEXT at http://www.rsds.org/2/library/articl...n_Pain2009.pdf

ABSTRACT
Complex regional pain syndrome (CRPS) is a severe chronic pain condition that most often develops following trauma. The pathophysiology of CRPS is not known but both clinical and experimental evidence demonstrate the important of the NMDA receptor and glial activation in its induction and maintenance. Ketamine is the most potent clinically available safe NMDA antagonist that has a well established role in the treatment of acute and chronic pain. This randomized double-blind placebo controlled trial was designed to evaluate the effectiveness of intravenous ketamine in the treatment of CRPS. Before treatment, after informed consent was obtained, each subject was randomized into a ketamine or a placebo infusion group. Study subjects were evaluated for at least 2 weeks prior to treatment and for 3 months following treatment. All subjects were infused intravenously with normal saline with or without ketamine for 4 h (25 ml/h) daily for 10 days. The maximum ketamine infusion rate was 0.35 mg/kg/h, not to exceed 25 mg/h over a 4 h period. Subjects in both the ketamine and placebo groups were administered clonidine and versed. This study showed that intravenous ketamine administered in an outpatient setting resulted in statistically significant (p < 0.05) reductions in many pain parameters. It also showed that subjects in our placebo group demonstrated no treatment effect in any parameter. The results of this study warrant a larger randomized placebo controlled trial using higher doses of ketamine and a longer follow-up period.

(c) 2009 International Association for the Study of Pain. Published by Elsevier B.V. All rights reserved.

What's so significant about these results, as you can see reading the study, the study, is that no effort was made to limit the study participants to individuals who had been symptomatic for six months or less at the time of treatment: a group that is far more likely to benefit from any number of therapies than are those [whose condition has become chronic].

And on a different but also promising tract, please read "An Effective Treatment of Severe Complex Regional Pain Syndrome Type 1 in a Child Using High Doses of Intrathecal Ziconotide (Letter to the Editor)," Stanton-Hicks MD, Kapural L, J Pain Symptom Management 2006;6:509-510, FREE FULL TEXT (and a couple of amazing photos) at http://www.rsds.org/2/library/articl...32_6_pg509.pdf, which was followed more recently by "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 Practioner 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 note that the reported success rates in the foregoing studies were considerably better than the 1:5 you were quoted [for radio frequency ablation].

I apologize for laying all this on you. I just want you to know that there are kinder/gentler options out therebefore you return to your local butcher: even if he's on the faculty of a very good medical school, he's living in the past. So what I am suggesting is that before seeking further treatments from the same fellow, you seek another opinion. Since you live in Illinois, I would suggest the Cleveland Clinic, and specifically Michael Stanton-Hicks, M.D. Where he is now on senior status, I have been told by his department that he only sees patients with established cases of CRPS and then will do so only after first reviewing their medical records. Here's his directory page at the Cleveland Clinic http://my.clevelandclinic.org/staff_...taff_1175.aspx I believe the number for reaching his secretary is (216) 444-7246.

Finally, here's his departmental homepage http://my.clevelandclinic.org/anesth...t/default.aspx.

And once again, I am so sorry for what you are going through . . . .

Since then, I have become aware of one article suggesting that there may be not only dose related effectiveness issues but dose-dependant safety issues as well. Considerations and methodology for trialing ziconotide, Burton AW, Deer TR, Wallace MS, Rauck RL, Grigsby E, Pain Physician 2010 Jan;13(1):23-33:

University of Texas MD Anderson Cancer Center, Houston, TX 77030, USA. awburton@mdanderson.org

Abstract
BACKGROUND: Before long-term intrathecal analgesic therapy is initiated, patients often undergo a spinal analgesia trial. Ziconotide is a nonopioid intrathecal analgesic used to manage severe chronic pain, and a variety of methods have been used to trial ziconotide. OBJECTIVES: The purpose of this review is to compare and discuss the different methods of ziconotide trialing. METHODS: Various databases (i.e., PubMed, Excerpta Medica, Cumulative Index to Nursing and Allied Health Literature, Biological Abstracts, Cochrane Database of Systematic Reviews, EMBASE, International Pharmaceutical Abstracts, and Google Scholar) and association meeting abstracts were searched with the use of the terms ziconotide, Prialt, trial, and trialing. In addition, a search was conducted for abstracts/posters presented at a variety of association meetings. RESULTS: Nine sources, including one expert opinion piece, were identified. Three methods of ziconotide trialing were discovered: continuous infusion, limited-duration infusion, and bolus injection. Results indicate that patients often achieve analgesia during trialing, regardless of the trialing method. Adverse events reported during ziconotide trialing studies were similar to those reported during ziconotide clinical trials. Preliminary evidence suggests that both effectiveness and safety may be dose-related. In 3 studies the value of ziconotide trialing in predicting long-term patient response to ziconotide therapy was investigated; however, the results were preliminary. The expert opinion piece from 2008 recommended trialing ziconotide via continuous infusion, using a starting dose of 1.2 mcg/d and dose increases of 1.2 mcg/d every 12 to 24 hours, for up to 3 days; the trial may be extended in some cases. LIMITATIONS: Given the small samples size and lack of controlled ziconotide trialing studies, it is currently not possible to determine the relative safety and effectiveness of different methods of ziconotide trialing, nor is it possible to determine if trialing is predictive of patient response to long-term ziconotide therapy. CONCLUSIONS: All 3 methods of ziconotide trialing appear to be viable options, and no method can be considered superior on the basis of the evidence presented in this review. Controlled studies comparing ziconotide trialing methods may be warranted.

PMID: 20119460 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/20119460 [While it purports to be a "free article," the only way you can get it freely is if you have never signed up with the publisher before; nor was I keen to buy it from the publisher on terms that I not share (even freely) with anyone else.]

That said, one of the authors in the most recent review article was the senior author in a published a study done a year earlier, to the effect that side effects were NOT dose dependent, so I don't know what to make of it. See, 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. Epub 2008 Aug 19:

Lifetree Clinical Research and Pain Clinic, Salt Lake City, Utah, USA. lynnw@lifetreepain.com

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. [Emphasis added.]

PMID: 18715748 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/18715748

Someone cynical might wish to suggest that the manufacturers of implanted pumps might look unkindly on one-time in-patient treatments resulting in complete cures, but that's not for me to say.

In any event, I repeat my suggestion to contact Dr. Stanton-Hick's secretary for an appointment. [However, as set forth below, I am willing accept to the verdict that Dr. Stanton-Hick's doesn't buy off on occular RSD; but that does not deminish my interest in what he is doing with "high dose" Ziconotide for whatever else may ail us.]

Mike

Hi Mike,

Thank you so much for your post, also it is nice to put a face to your posts! My Lindsay has been to the Cleveland Clinic and saw Stanton-Hicks. He didn't feel she was a candidate. I do however know of a young girl that has had the "Snail Poison" She was in stage 3, they put it in at the Cleveland Clinic. It did help her, she was in a wheel chair and in stage three of her plight. She spent 3 months in the Childrens pain rehab program. She is now walking and functioning after three years. However, Lindsay was not a candidate.
Lindsay has also undergone two rounds of the three day four hour Ketamine infusions with Dr. Kirkpatrick. She is not up to doing the Ketamine again. But, I am going to try the Hyperbaric chamber. You always have such great information. How are you? I hope that your days are better.

Sandy

Dear Sandy -

One can never say you haven't done your homework. But I'm sorry to hear that Lindsay wasn't a candidate for Ziconotide.

Good information or not, I feel bereft of good ideas at this moment) far too late at night in California) and wish I had more to offer. And I'm not about to suggest RUL ECT for a twelve year old! And forgive me for not checking the search engine on this, but while not a cure, have you exploered the possibility of IVIG along with the HBOT?

Glad you liked the pic. I color enhanced it to make up for the lack resolution: that's Half Dome at Yosemite in the background from a couple of summers' ago.

Wishing you and Lindsay well with all my heart,
Mike

Hi about 6 months after my pain started in my leg and was dx with RSD and PN I started to have eye problems that got so severe I was crying from pain of the eyes. The pain also began to go to the ear where the pressure was so bad and like a horrible ear infection. During a year or so I went to 10 eye specialists, 50 eye apts,neurologist,mris etc there was nota cause other then blepheritis and dry eye but that does not cause the horrid pain that I experience. I saw Dr Stanton Hicks and from my experience he does not believe in rsd in the eyes cause he suggested another eye doctor and when I was talking about my eye pain he brushed it aside and the focus was on the legs only. I have heard others with rsd who have it in their eyes so though it may not be as common as in the limbs I do think it can be and is for myself and others. I hope the treatment I find for my legs will also help with the eyes. For others as well too. My ear pain I feel is connected or spread to the ear because my eye pain and about 6 months after it started it changed the type of pain and it began going to the ear. I have no idea if I am making any sense. Sorry I could not offer more help just that I am in a similar position. Hope your daughter feels better

I was the lucky winner of permanent horners syndrome after an unsucesful RFA in the ganglia branch of nerves in the neck . I have the droopiness on the left side of my face and the left pupil stays constricted . I have occasional flares that involve the eye and have been told by my opthomologist that the ganglia branch of nerves is tied in with the eye and my nerve is telling the brain we have a problem even though the eye itself is healthy . During these flares I will have severe pain in the eye and blurred vision , all I can do is wait it out when it comes on . Hope this helps some . Take care !

Hi all,

Well both Lindsay's doctors are on vacation! Surprise, surprise. She woke up this morning with less eye pain. She went to PT and her Therapist looked at her eyes and said she has a slight yellowing. I have an appointment for her next Tuesday. I am watching her very closely, but she felt better after PT. She was able to go outside in the light without pain today. We have had massive rain storms for the past week. They have not let up. I am sure that could have a lot to do with her pain. But, if the yellowing changes I will take her to the ER.

And RUReady, I am so sorry that happened to you. I just find that unbelievable. I hope that things look up for you. Everyone has been so helpful during this flare of Lindsay's I thank you all so much.

Much love,

Sandy

I too was the lucky winner of permanent horners syndrome. I had TOS with the removal of a rib. I woke up from the surgery and could only open 1 eye,and that was in 1990. To this day when I flare my eye droops,gets swollen and red and painful,the Dr.s tell me to also wait it out, easy for them to say, but evidently there is nothing they can do as I have seen a few specialist, it stinks but we must just keep on going.So,yes I would have to say that RSD can go to your eyes. I hope everyone has a painless day today
Wendy

Thank you for bringing Dr. Stanton-Hick's position on the possibility of occular CRPS to everyone's attention. I stand corrected on the issue of any referral to him that would reference occular issues, per se.

Mike

Sandy glad your daughter is doing better and i hope it continues
Mike I am not saying people should not see Dr Stanton Hicks but just my experience with the eyes and overall I was not that happy with the care in general for myself. A girl I know though had a scs impanted by him and is doing well.
Ruready I am sorry about your eyes. For me too a lot is about waiting it out for the pain and flare to settle down.