Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

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Old 12-24-2012, 09:49 AM #1
whistand whistand is offline
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Quote:
Originally Posted by Neurochic View Post
The ketamine coma procedure was stopped in Germany some time ago because of the disastrous fatal and near fatal consequences there were for some of the patients. Its not only the ketamine itself that causes these risks, there are huge risks from infections, ventilation and so on. The only other country where it was being carried out, also on an experimental basis was Mexico - not a country well known in medical research circles for its strict clinical trial rules and pharmaceutical medicine controls.

I'm not saying that there aren't some people who have had benefit from this experimental procedure and I'm sure your daughters situation is heartbreaking and very serious but if the procedure is still available in Mexico and if you are considering it, at least research thoroughly the risks. Research also the long and short term outcomes for the patients who have survived the process because that will allow you to make an informed judgement about the risks versus the rewards. Those risks are significant which is partly why no other country will permit this procedure even on a trial basis.

The doctor who suggested that your daughter should have this procedure has certainly believed in its efficacy for a considerable time and is still regarded, in the USA at least, as a leading authority. He should be able to supply you with the available clinical trial data, case studies and follow up papers or at the very least references for these things so you can obtain them - if he is prepared to suggest it then he should be happy giving you what you need to make that informed choice. Once you have that information as a start point then you can do your own research to make sure that it seems to be as balanced and representative as possible.

Don't be afraid of reading the clinical trial papers and the published research rather than secondary sources of information like doctors websites and articles. They are often loaded with bias and personal opinion that isnt backed up with any evidence. Most of it isn't as technical as you'd think and you will be able to get a good feel for the situation even without a medical degree.

The issues of loss of career and education opportunities are ones which many people with CRPS have to deal with, even when they have a far less severe presentation than your daughter. It is bound to be a desperate situation for you as a parent and for your daughter too but it is one of the many hard realities of this condition. I always think that it is wise to hope for a positive outcome but to prepare for the worst. This might mean that you think about what practical and emotional things will help if your daughter is likely to be unable to work and go to college without limiting her or your hopes and aspirations for her in case her situation improves.

As others have said, there may be other therapeutic interventions you can look at, not knowing what has already been tried for your daughter, it is hard to comment. I can only imagine how difficult things must be for you and I wish you well in making these difficult but hopefully informed choices.
THANKS Neurochic!
As a nurse, I worry about all the complications you have mentioned. We saw this dr the day of Hurricane Sandy. It took a month for the office to call the neruontin. My daughter and I left msgs re. the #3 meds he wanted her on. I finally got through to the nurse and she said she didnt know why we even came to the office or how the dr even made it in. She said they were closed. (We kept calling and the answering service and his office was the only one that NEVER closed. My conversation with the nurse did not go well. She said the dr NEVER remembered saying anything re. meds nor did he write that in her chart. So despite what he told us, the nurse/dr and now prescribing neruontin 300 three times a day, told her to take an antidepres and NSAID ic ibupro. The dr said my daughter's treatment at CHOP was barbaric (paraphrase). We were so upset after waiting for 3 years, the hurricane and her illness, I cannot remember the words. It maybe Mexico where he wants to send her... started out as San.... again we were very upset. My daughter's treatment was INTENSE physical therapy.
College is becoming difficult. Every time we have a storm, barometric pressure decreases, pain becomes more severe.
RE. % of those going to another country, well they didnt sound that great. Eighty went to Mexico 43 came home pan free, the rest pain returned in a year. I do not like the odds! I will copy/paste the info you gave me and will pass it along to my daughter.
Thanks for taking your time to help us!
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Old 12-24-2012, 11:56 AM #2
Neurochic Neurochic is offline
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The hospital Dr Schwartzman would have mentioned to you is San Jose, Monterrey, Mexico. The doctor there who manages the process there is called Dr Cantu. The coma isn't done in any other country because of the fatal and near fatal outcomes that have resulted. This is why I stressed the critical need for you to research the whole thing incredibly thoroughly. In addition, you would have to raise the money yourself for the treatment and the hospital stay because it won't be covered by any US insurer. I don't know how the charging works if there are complications and patients need to stay in ICU or the hospital longer than the anticipated 5-7 days.

If I were in your shoes, I think I would be questioning the professionalism of this particular doctor's whole set up given the problems that seem to have resulted in relation to something as simple as 3 prescriptions and what is in a set of patient notes. These are incredibly basic drugs and any bog-standard pain management doctor could/would have prescribed them if faced with a case of CRPS. You don't need to wait 3 years for a CRPS expert for these prescriptions!

If your daughter is only just being prescribed these basic medications now, what has she been prescribed previously? Your post doesn't have much information about her previous history so its hard to know what she has already tried. I fully appreciate you may not want to share more information but I will ask and you can decide how much you want to share.

Why was her treatment at CHOP deemed to be so barbaric? Was she on an inpatient programme with intensive physio perhaps? I know that it's not a popular opinion but the latest research being done in multi centre trials in Europe is demonstrating that intensive physio regimes, in spite of increasing pain in the short term, are yielding good pain and functional outcomes for patients. It's also recognised that in children, adolescents and young people, this kind of " tough love" approach often yields good results.

Anyway, if there is more you want to share, I'm sure people will try to help with as much information as they can.
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Old 12-25-2012, 11:58 AM #3
SandyRI SandyRI is offline
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It is my understanding that Dr. Cantu is no longer performing the k comas in Mexico, both Germany and Mexico have been shut down. The last k coma was actually performed in the US.

dr. sherry runs the CHOP program, his program is noted as one of the best in te country for children and young adults.

I am going to send you a PM with more info. Sandy
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fmichael (12-27-2012)
Old 12-25-2012, 07:48 PM #4
Neurochic Neurochic is offline
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I didn't think the coma treatment was still being done in Mexico. However, since this lady had posted saying that Dr Schwartzman (who is one of its biggest supporters) had only very recently recommended the lady's daughter have it done, I assumed I must have been wrong. It seems totally bizarre if he did actually recommend a procedure to someone if it is no longer being done anywhere. It wouldn't inspire confidence.
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Old 12-27-2012, 05:09 AM #5
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Quote:
Originally Posted by Neurochic View Post
I didn't think the coma treatment was still being done in Mexico. However, since this lady had posted saying that Dr Schwartzman (who is one of its biggest supporters) had only very recently recommended the lady's daughter have it done, I assumed I must have been wrong. It seems totally bizarre if he did actually recommend a procedure to someone if it is no longer being done anywhere. It wouldn't inspire confidence.
No it wouldn't, would it.

Dr. S. is retiring. Dr. Aradillas is taking many of his patients.
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Old 12-27-2012, 12:17 PM #6
Neurochic Neurochic is offline
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Perhaps it's a good thing - sometimes patients are ultimately better served by someone new coming in who has the benefit of working alongside an experienced specialist but can also bring their own fresh ideas. Here's hoping anyway...
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