Partial Recovery
 

I was diagnosed with RSD back in Dec 2007 (full body). After much prayer, I found a neurosurgeon who performed surgery in Sept 08 to reconstruct the nerve I cut in my index finger (who knew that a small cut requiring only 4 stitches could cause such intense pain all over the body). I reinjured the nerve in PT and by March 08 pain decreased to half of what it was before surgery (not bad since I reinjured the nerve). Had a second surgery in late June 09 to bury the nerve in a bone in my hand. Still waiting for the outcome. It is a slow and painful process.

The pain after the 1st surgery decreased to about half (4) of what it was before surgery (7). I suspect it would have probably disappear has I not reinjured the nerve. If I kept my hand still the pain would go down to a 1 or 2.

I am not taking any medications as they made me sick or loopy.

There is hope. Do your research, find a good neurosurgeon. Allot of doctors are not aware of nerve pain. 4 doctors told me that the original injury may have caused the symptoms but fixing it would not solve the problem. In my case, trying to fix the problem reduced the pain. I am hoping this second surgery will eliminating the pain.

With God, all things are possible!

You had better luck at Johns Hopkins than I did in 2006. Through a rheumatologist at the Mayo Clinic who had seen me and considered my dad a personal friend, he referred me to a collegue at Hopkins who was doing some really advanced work on inflamatory cytokines. Unfortunately because RSD/CRPS was not a defined rheumatalogical condition, he couldn't see me, so he passed the file on to a gentleman whom I understood was one of the top RSD nuerosurgeons in the world. He too took a pass (possibly the fact that I had sustained bilateral injuries deep in my feet had something to do with it) and sent it over to the head of the neurology dept., who passed it down the line. By the time I showed up from LA for the appointment, it was with a junior "Instructor in Neurology," who specialized in treating MS. When she rhetorically asked "what is it I'm supposed to do with you," I suggested she call the neurosurgeon who had sent the my file to neurology, to which she replied "what makes you think he would return my call."

As it was the only thing she could do was offer a referral to the folks that specialized in palliative care, but reviewing my history and med list, we both agreed that I was already receiving appropriate care in that dept. The end.

ps - Although they aren't that good with CRPS (especially if you are not living in the immediate vacinity of Rochester MN so that you can be followed up on a regular basis) the business of "what makes you think he would return my call" would NEVER happen at the Mayo Clinic.

Congratulations on your partial recovery from this monster, RSD - I am SOO happy for you!!! It must be so great to be able to get on with your life again!!

Thank you for sharing your story of hope with us. I was 12 years old when I got RSD in my left leg and it has since spread to both arms. Your story gives me hope that things can get better. It's really hard at times to keep hope when things are really bad but without it, we have nothing!

I hope things get better for you even more and you are in my thoughts!!:hug:

Alison.

I,too, hope you have a full recover. That would be wonderful. Keep us posted as to your recovery. What state do you live in? Welcome to Neurotalk and hope you a steady recovery, loretta

Hi michael, I also have a lot of respect for the Mayo Clinic. My husband, daughter, and I have been to the mayo here is Scottsdale. We have Barrows Neurological Institute here in Phoenix, but their RSD Dr. moved. The RSDSA had their annual meeting that I attended here in Scottsdale North Hospital. They are going to have a DVD made available to all. When my Dr. retires next year, that's where I am going. The Pain Managaement Center was co-founded by Dr. Lynch. Well, I'll at least meet with him. Sorry you had that experiencs at Hopkins. My Dr. speaks highly of John Hopkins.
What are your thought on HBOT? Have you done any research into it? My Dr. just built two clinics here, and has one in each of his clinics. Hope you have a good weekend-We are having 113-115 degree weekend. Take care, loretta

And hi Loretta -

Just time for a quick note. I've always heard the heat was good for RSD, but that must have it's limits. Seriously, it's hot enough here in So Cal. (except along the beaches) that we thought we were going to loose a lot of plantings on a very steep hilside when I realized last night that our spinkler system had been down for several days. I was out last night - which is when I'm typically more comfortable - hose in hand for close to an hour. Managed to get a plumber this morning on very short notice and we're mostly up, and the rest can be easily done with the hose until we bring out an irrigation contractor ($!$!$!).

As to HBOT there is an almost total dearth of information in peer reviewed journals. I think the last thing in print was a single case report done in 1995, which appears under "Treatments" on the RSDSA Medical Article Archieve page at http://www.rsds.org/2/library/articl...ive/index.html. You can link to the case report directly at http://www.rsds.org/2/library/articl...Hyperbaric.pdf

I have no idea why there isn't more out there, but I've looked.

Mike

"with God all things are possible," is scripture,as wll as,,"all things are poosible to those who believe" and" everything is possible with God",,,Great news are the recovery,,,
keep us informed and in prayer,,,,,,,,,,,,,,,,,,bobber

I had surgery to remove a screw that was literally "getting on my nerves." I could feel it scrape every time I bent my toes. I have much improved since my surgery. I am now pain free. I had many other therapies as well, but I think it was very important for me to get the screws out of my foot. I am very happy to put RSD behind me, and I wish recovery for all of you, as well.

Partial Recovery
 

Thanks for the welcome. There is such a great group of people here willing to share their experiences.

I live in NC but the surgeon I saw was up in Baltimore.

I am now looking into possibly trying the inpatient ketamine infusions. I am trying to find a pain specialist near by.

I had heard of one woman who had RSD for 20-30 years and it had suddenly went into remission. She and her husband had gone on a little tour of the U.S. on bicycles. I have not been able to find that article again but it gave me great encouragement.

With God, all things are possible.

Yes, you are all in my prayers. May God heal each and every one of us.

There will be a day with no more pain ....

Pain Free
 

Absolutely wonderful! Great news.

God is good!

I just recently received a list of ketamine treatment centers in the US from Jim Broatch of the RSDSA. I would be happy to mail you a copy of the list, please feel free to send me a PM.

Sandy

The God who created us strengthens us. For some of us God's will for our life is remission for others he has different plans. Whatever his will is he will also provide us what we need to manage our life. There are sciputures in the Bible to support these ideas. I'm just too foggy brained to think of them or look them up. If you want to know where they are PM me and I will look them up.
God is amazing and will meet our needs if we ask him. If you don't have a personal relationship with our GREAT GOD ask me or attend a church close to you.
God Bless,
Sherrie

Please, if you could email me that list I would so appreciate it.

This is the link in FB:

http://www.facebook.com/group.php?v=...70&topic=11491

I sincerely hope I am not making any administrative errors by posting the link here - it is Jim Broatch's list followed by a discussion of editorial corrections to the list.

Good luck. Sandy

Ketamine Infusions - Update
 

Hope you guys are all doing well and had a wonderful Thanksgiving!

Well, I thought I would give you guys an update on my ketamine infusions. I had the 3 day 4-hour escalating dose in September, then another set in October (at a little higher dose) and I am looking to go back in December (next week).

Reminder: I have full body RSD. I won't go into too much detail but try to give an overview.

Sept. Infusions - I thought it had very little effect right after the infusions. But as the week went on, I noticed less areas were in pain and I had some days of lower pain. Same thing in week 2. By week 3, the pain had returned mostly in my left side from head to toe (very strong) and by week 4 I was back where I started - full body.

I quickly went for a 2nd set of infusions.

Oct. - same thing - did not feel like it did much but as time went on I had pain in fewer places. It hardly felt it in my hips for about 3 weeks (which was very strange because that is where I feel it predominently). I had some really low pain days and it is coming back on the left side (slowly) but not as strong as before and intermittently coming back on the right side. I had 5 days of low pain last week (like a holiday):)

So I had the 1st set of infusions, then 4 weeks later I had the 2nd set and 9 weeks later I hope to have the 3rd set (hopefully, it will be even longer before the next one and hopefully less pain).

I am not without pain but I have had some low pain days. It is a slow process (and the ketamine is no picnic) but I hope to see more improvements to come.

Some weeks after the 2nd set of infusions I had one night where I slept 8 hours and a couple of nights of 6.5 hours! I usually average 4-5 hours of sleep.

Some people have immediate pain relief after the infusions (which is really awesome to see - can you imagine, all of a sudden being pain free).

For others, like myself, it is a slow process. Our brains are trying to change from the pain pattern back to normal. Have you guys see the studies they have done one brain patterns and functional MRI's? Quite interesting! If the pain goes away, the brain can re-wire back to a normal state (yes, it is reversible). Very interesting. They have seen this in people with CRPS and phantom limb pain.

With God, all things are possible!

Hi -

Where did you go? And what was the protocol? When you say "set," what do you mean by that? Thanks so much. (Don't mean to pry, but I am looking into this myself, and I'm very interested in what other people have tried)

Also, did your insurance company pay for all or part of it?

XOXOX Sandy

Ketamine Infusions - "Set"
 

Hi Sandy,

I went to see Dr. K. in Tampa, Florida.

Basically, by "set" I mean a series of 3 infusions - 1 per day (4 hours of ketamine) for 3 days, escalating dose.

Dr. K. likes to do the infusions starting on Tuesday, then Wednesday & Thursday.

The first set in September I started out on 40 mg/hr, next day 60 mg/hr and last day 90 mg/hr. Everyone is different (some people he can get as high as 200 mg/hr). I don't need much to get me to the state he needs me to be at.

In October I started out at 60 mg/hr, next day 90 mg/hr and the following mostly 90 mg/hr and he did manage to get me up to 135 mg/hr (for about 10 minutes).

The staff and Dr. K are wonderful. I get extreme nasea even with the medication Zofran. I get hallucinations but nothing frightening (just a distorted view of reality - room looks bigger, different colored walls, foliage - that is not there). I simply do not like the loss of control and not being able to escape from this altered sense of reality.

We have not heard back from the insurance company yet (but I am hopeful).

I am also not well for 10-14 days after and my head is in a fog. Everyone is different and have different reactions. Both times I went, the other patients were pain free after the infusions - which I thought was really encouraging.

Some people feel the effects right away while others it takes longer. Usually, what they see is that people require fewer and fewer infusions as time goes on. He has great videos on his website which I found extremely helpful.

http://www.rsdfoundation.org/en/Medical_Synopsis.htm

They have seen success with the coma and now they want to see if they can accomplish the same thing with higher doses of infusions rather than undergo the risks of the coma. I was a candidate for the coma but wanted to try the 3day to see if it would work.

They have had good success with low dose and people with RSD in one limb.

It is a process that takes time. From what I understand, basically, our brains patterns have changed to a pain pattern and the ketamine (and exercise) is helping to get it back to a normal pattern. It can take months to years. Even some of the coma patients continue to improve years after the coma.

If you look at Shannon Stockers videos or Heather Kennedy's videos you can see the progression of their healing. It is not a straight line up.

On the flip side, some coma patients seem to wake up pain free and continue down that road (but they still get boosters for a period to try to keep them on that path). They have patients that are 4, 5, 6 years out and are still pain free!

I hope this answers your questions. Feel free to ask more, if you like.

There is hope! With God, all things are possible!

Irene

Hopefully, this did not post twice - having some difficulty with my internet connection. :)

I'm so happy that you found some relief from the relentless pain of RSD. I'm very curious about your diagnosis. How did your doctor(s) determine that you had "full body" RSD?

I still have one piece of metal left in the bones of my foot that I think is the culprit for all my pain woes but no one can tell me why I have pain else where.

I'd apprecaite any further insight you could share with me. I hope you are still doing well.

MsL

MsL

Diagnose of Full Body RSD
 

This is the 3rd time I have tried to post this reply. Hopefully, I has not posted 3 times. :D

I had full body nerve pain (head to toe), shiny skin on my hand and changes in color on my left foot, sweating more predominently on the left side, more hair growth on one left side, temperature difference. I discussed it with my neurosurgeon who thought it might be CRPS. That is when I decided it was time to see Dr. K who confirmed the diagnosis (you don't have to have all the signs - but the nerve pain in the key factor).

Dr. K has the new criteria on his website as to how it is diagnosed (most websites have old information - you know the 3 stages? - old information). He also has videos of patients and their rehabilitation. Very informative! Everyone presents differently. This is particularly helpful for doctors who do not know what this is.

I am sorry about your situation. Where is your pain?

My neurosurgeon said the pain was referred pain - like when someone is having a heart attack but they feel pain in their left arm. They have studies on this. I think one recently about women who had C-sections and would have pain in their feet or teeth - other places other than the abdomen.

They think that the brain may be remapping because of the pain but the good news is they have seen it can be reversed. :) Oxford Journals had an interesting article on it. They can see the change using a functional MRI of the brain.

Just curious as to why you think the metal is an issue? You know your body the best. Will removing the metal help? I don't know.

I know it is hard to make a decision.

For me, I had cut my finger and I got full body pain, I had surgery on that same nerve and the pain went up then down (9 months later), PT massaged the nerve on the finger due to the scar and the pain went up, had a second surgery on that same nerve and the pain went up again. To me, this is a clear indicator that this nerve plays a role in this problem but it is not the only piece of the puzzle.

It may have been better had I had the surgeries under constant ketamine infusion.

Keep us informed as to what you decide. There is always hope!

By the way, thank you for asking, I am still doing better than I was before the infusions.:D

I pray you will be feeling better soon.

IT

Functional MRI - Reversable of Brain Network State
 

http://www3.interscience.wiley.com/j...TRY=1&SRETRY=0

CNS Measures of Pain Responses Pre- and Post-Anesthetic Ketamine in a Patient with Complex Regional Pain Syndrome
L. Becerra, PhD,* R. J. Schwartzman, MD, † R. T. Kiefer, MD, ‡ P. Rohr, M MD, ‡ E. A. Moulton, PhD,* D. Wallin, BS,* G. Pendse, MA, MS,* S. Morris, BA,* and David Borsook, MD, PhD*
*Pain/Analgesia Imaging Neuroscience (PAIN) Group, Brain Imaging Center, McLean Hospital, Harvard Medical School, Belmont, Massachusetts; † Drexel University College of Medicine, Department of Neurology, Philadelphia, Pennsylvania, USA; and ‡ Department of Anesthesiology and Intensive Care Medicine, Eberhard-Karls University, Tuebingen, Germany
Correspondence to David Borsook, MD, PhD, Pain/Analgesia Imaging Neuroscience (P.A.I.N.) Group, Brain Imaging Center, McLean Hospital, 115 Mill Street, Belmont, MA 02478, USA. Tel: 617-855-2691; Fax: 617-855-3772; E-mail: dborsook@partners.org
Copyright © 2009 American Academy of Pain Medicine
KEYWORDS
CRPS • Neuropathic Pain • Imaging • Clinical • fMRI • Ketamine Coma

ABSTRACT
Background. Previous reports have indicated that ketamine anesthesia may produce significant improvement if not complete recovery of patients with complex regional pain syndrome (CRPS).

Aims. Here we report on a patient who had CRPS affecting mainly the right side of her body who underwent functional magnetic resonance imaging (fMRI) scans prior to and in the months following apparent successful treatment with anesthetic doses of ketamine.

Materials and Methods. The patient underwent two imaging sessions: one during her pain state (CRPS+) and 1 month after her ketamine treatment in her pain-free state (CRPS-).

Both spontaneous and evoked (brush, cold, and heat) pain scores decreased from 7–9/10 on a visual analog scale prior to the treatment to 0–1 immediately following and for months after the treatment. For each imaging session, the identical mechanical (brush) and thermal (cold and heat) stimuli were applied to the same location (the skin of the dorsum of the right hand).

Results. Comparison of CRPS+ vs CRPS- for the three stimuli showed significant changes throughout the cerebral cortex (frontal, parietal, temporal, cingulate, and hippocampus), in subcortical regions such as caudate nucleus, and in the cerebellum. In addition, resting state network analysis showed a reversal of brain network state, and the recovered state paralleled specific default networks in healthy volunteers.

Discussion. The observed changes in brain response to evoked stimuli provide a readout for the subjective response.

Conclusion. Future studies of brain function in these patients may provide novel insight into brain plasticity in response to this treatment for chronic pain.

They have also seen this reversal in people who have recovered using mirror therapy, ECT, and PT. They have even seen this reversal in people with phantom limb pain.

Dear IT,

Thanks very much for sharing your experiences and information. It is very informative. I went to Dr. K's site and he has done quite a bit since I last visited it a few years ago.

My pain is primarily in my left foot where I still have one screw left after a failed bunion surgery. I had 2 of the screws removed last year but this 3rd one had so much new bone growth around it and was so deeply embedded that they didn't want to monkey around with it. I get deep sharp shooting nerve pain directly from that area and a recent bonce scan showed inflammation in my foot directly under the area where the screw resides. The swelling of my foot increases with activity and stress. I think something has changed inside structurally very slightly and the metal is literally getting on my nerves.

I have burning and deep bone pain that moves around the left side of my body, primarily my joint areas and it comes and goes. My bones turn ice cold. If I don't stay on top of my RSD pain in my foot these other areas become overly sensitized, that completely exhausts me and I crash. You are probably right that it is like referred pain.

What is strange is that the bone scan also revealed more degenerative changes in my right foot, more so than the left side. While I do experience occasional pain in the right foot too it was never the nerve pain of RSD. Since I realized that my doctors were all concerned about my right foot too I became a bit anxious about potential spread but no one thinks I have spread there. I think the mild burning I'm feeling in that area is simply a psychosomatic response to reading the report. I keep telling myself that and it seems to calm down.

I've always believed that the 3 metal screws were the real source of my pain and I was so deeply disappointed when I was informed that they couldn't take out the 3rd. The surgeon is a very well respected head of the department for trauma surgery at that hospital and I think he did what was best at that time. There is no doubt that I benefited from the removal of the other screws as they were working their way out on their own with each step I took. I'm working toward a plan to see what else can be done.

I'm so happy to hear you are doing better following your infusions. Do you plan to have any more in the future?

You are right, there is always hope. Thanks for the inspiration.

MsL

Pursuing Options
 

Hey MsL,

You are very welcome!

Your story is very intriguing. I am so glad to hear you got relief after they removed the other 2 screws (great news)! Did the doctor feel that the pain would lessen over time? Did he have any other suggestions? Did, the surgery to remove the other 2 screws cause you any additional RSD pain or any spreading of your RSD symptoms?

I like to think of doctors as health advisors. But the decision ultimately lies with the patient (after all, it is us going through the pain - but we also have to deal with the consequences of our decisions too).

I sought counsel of a few different doctors and PT's and I got mixed reviews on whether or not to get the 1st surgery. I did a ton of research on the internet too. I had to make the final decision.

I know 2 people who had the same surgery done on their spine within weeks of each other (by 2 different doctors, same area of specialty). One was instructed to wear a collar and the other not (his doctor told him that was old information). I thought that was very curious. The one who did not wear the collar faired much better.

Do you see an RSD specialist who can give you some insight? Have you seen a neurosurgeon? Sometime getting information from different sources can help.

I think you are on the right path to continue to pursue your options. Gather as much information as possible. Good luck on your quest for health and let us know what you decide.

Yes, I believe I will continue on with the infusions, as I need them. I know it is a process and it takes time.

With God, all things are possible!