RSD & Morton's Neuroma
 

I just joined this website given that my mom was just diagnosed with RSD and it has been a really hard few months for us. I am a only child and am extremely worried about my mom. She had a morton's neuroma removed September 1 and hasn't been the same since the surgery. She has chronic pain in her foot and leg and after going back to the podiatrist many times after the surgery, she finally decided to consult with our PCP given that the podiatrist just kept telling her that it would eventually get better. After a blood clot, many trips to a vascular doctor and a visit with a orthopedic surgeon, she was diagnosed with RSD. She had a test done to test the blood flow in her foot and leg, which went well, but she's still in severe pain and I am at a loss as to what to do to help. She is taking neurontin, but the side effects are horrible for her given that she is very sensitive to medications.

I have read many posts about RSD and it scares me to death. My mom lives in Virginia (I live in Denver) and she is seeing another anesthesiologist next week for a second opinion, but she is almost at the point of a mental breakdown. I have found that many people using this forum have gone through some very difficult times with RSD and I am looking for support and any recommendations on doctors and treatments. The first anesthesiologist she saw about a month ago recommended a nerve block, but she would like a second opinion because she didn't trust the first doctor. Does anyone know of a doctor in Virginia that can help her? I am willing to do whatever it takes to get her the help she needs. She is depressed and frustrated and I can't explain how hard it is to not be able to stop the pain she goes through on a daily basis. Thank you so much for any help or advice you can offer!

Sending hugs to you and your mom.

Trudy,

So sorry to hear about your mother. You are a good daughter in advocating for her with this. This website is a good place for information and support.

CRPS (or RSD if you will) is a unique and kind of rare condition. Because of that, it is VERY important that your mother get multiple opinions early in the process as CRPS is an extremely misunderstood, even by professionals. I just cannot emphasize this enough. So seeing that anesthesiologist is a very good idea; keep that appointment. I've seen doctors that have seen a fair amount of it, and I saw one doctor that had actually treated only 2 cases in 26 years. Those are the doctors that you do not use. Hopefully somebody that lives in Virginia can chime in with more specific recommendations on who your mother could see.

But when you see any professional, it is very important that you ask the following question directly to them: How many cases of CRPS have you treated?? Don't be shy. You need to know how well versed they are with CRPS. Your mother has to be her own advocate with her treatment here, as experience levels and treatment techniques can vary widely.

The first line of neurontin and nerve block is often suggested as treatment. In fact, that is exactly how I was handled. For me the neurontin is a godsend, it is the mainstay drug for my CRPS. I had the nerve blocks but they didn't help me, possibly because it took too long for my CRPS to be diagnosed. Time is of the essence here as the first 6 months are the most critical time for taming this condition.

What you'll find for certain is that everybody is different with CRPS. What works for one may or MAY NOT work for another. If neurontin isn't working well for your mother, that information has to be fed back to the doctors and there are other meds that can and should be tried. It is often a trial and error and to be honest, it may take a while to find what works best. Most often, a "multi-disciplinary approach" works best. Very rarely can this condition be successfully treated with just one modality like meds.

I'll give you a link to some websites that will provide far more information than what I can. The information provided within these links has been very helpful to me. I have chronic pain, but because of my treatment team (podiatrist, chiropractor, G.P, massage therapist, physical therapist and occasionally a pain mgmt. doc), I am quite a bit better than I was not long ago. Your mother will likely need a "team" of professionals as well.

Good luck to you and your mother. Check back and keep us posted......

http://www.podiatrytoday.com/article/2672

http://www.rsdfoundation.org/index.html

http://www.rsds.org/index2.html

http://rsdrx.com/

http://www.takingcharge.csh.umn.edu/

Thank you!
 

Thank you so much for your reply. You don't know how helpful it is to hear from someone that's been through this. I am taking all of your advice and will make sure to ask the doctor she sees next if he has worked with RSD patients. She had her surgery September 1 so I think we can make some great strides if we're very proactive but we are coming up on the 6 month mark soon. I have known about the RSD since Thanksgiving but it is so darn hard to get an appointment with these doctors! Have you also experienced this? Do you have any advice on what to say to get a appointment that isn't months away? I have begged and stated that it is an emergency and that doesn't seem to matter to the staff. This is one of the reasons why we're seeing another anesthesiologist. The first one was a nightmare to try and get the initial appointment. Also, do you think she should be seeing a neurologist as well? Do neurologists seem to be more knowledgable than anesthesiologists? I can't thank you more for you help. Happy holidays!

Trudy--I am sorry about your mom. I also realize how difficult it is for you as it has been extremely hard for my four kids to try
and understand this and have no idea what to do to help. Any time I see anesthesiologist mentioned, I try to point out that PM--Pain Mgt docs come either from the route (many more) or from neurologists who normally have a much better idea why certain procedures are done and why they work and when they do not, why not; versus the anesthesiologist who is trained to
knock people out, then learns various procedures as blocks etc., to me no more than a PA or NP doing the procedure. The top Docs dealing with RSD/CRPS that I know of are all neurologists with the exception of one having been a podiatrist and surgeon. I researched it once before but forget the figures but there are a great higher number of PM docs coming from anesth. (provides anesths w/ another discipline) than neurologists, some who specialize completely in epilepsy and know little if anything about RSD/CRPS. So while it is not always possible or feasible, I would always opt for the neurology trained doc who has entered pain management.
I have had both and had no problems with the PMs trained in anesth but will say I have asked questions re procedures which they had no answer while again, the neurologist knew why it was being done and what did nervous system etc. which only makes sense as it is their training. I wish you and mom all the best. You are doing all you can by learning at a forum such as this. Do not neglect your own needs or health, this is a lifelong battle. God Bless--marty hansen austin, tx.

Trudy,

Scheduling specialty appointments out a while is definitely a sign of our "challenged" health care system. One suggestion that I ALWAYS implement is this. Ask them if they would call your mother in the event of a cancellation. Many clinics will do this, but most won't tell you about this service UNLESS you ask. If your mother has some flexibility and can accommodate making it to the clinic on somewhat short notice, this can really be helpful in keeping the process moving along.

As for neurologists, I have mixed feelings for the following reason. If you see one, be sure it is one that specializes in conditions like CRPS. Seeing a neurologist that knows little or nothing about CRPS (yup, they are OUT THERE!) can just keep you from getting to the bottom of this. But see the right one and you may make quicker progress and have a better understanding of what truly is going on. Know this. Neurology is a specialty, but within that specialty are "subspecialists" who have more experience within the broad definition of neurology. The first neurologist I saw knew literally nothing about CRPS. Seriously. So you really have to do your homework before making an appointment. And again, ASK about their experience with CRPS.

As they say in the financial industry.....your results may vary. It goes for doctors and therapists as well.

Good luck!

I'm so sorry to hear what your mom and you are going through right now.

You've been given some good information about neurologists and PM docs. The key is to find a main doctor to work with who really understands RSD and who your mom feels she can trust. But you definitely want to make sure that this is treated aggressively from the start.

As far as medications...there are tons of them out there and everyone has different reactions to each. Neurontin did nothing for me...Lyrica had a much more noticeable impact on my pain vs any other medication I have been put on. It's also important to understand that often it's finding the right combination of meds that has the greatest effect. Obviously if she continues to have bad side effects from a med then she should probably try to find a different one. Then if that helps a little with minimal or no side effects you can work with the doctor to adjust dosage or add another med in there. Just don't let them put her on a whole bunch of meds at once because you will never know which (if any) are helping and if there are any side effects which is causing them. Good doctors should already know this...but it happens all the time where the doctors will put you on 3-4 meds all at once and it can cause quite a mess (talking from experience on this one).

And just a few things that your mom should be aware of while she is waiting to see a doctor or get treatment. First...NO ICE! Usually we think that when there is swelling then we should use ice...but this is not the case with RSD. Even in non RSD areas...no ice. And second...she has to keep moving. Immobilization will only make the RSD worse. Even if she can only do a very little bit, she has to try to do it. On bad days when my ankle hurts so bad that I can't walk I still at least try to move it back and forth or do some physical therapy exercises while seated. Also, know that physical therapy is a critical piece of the puzzle in treatment of RSD, so any treatment plan the treating doctor has for you mom should include physical therapy.

I am so sorry to hear that your mother is suffering and I hope she finds a good doctor soon who can get her some relief. Best of luck to both of you. This is a great place to ask questions and just for support from people who understand what life with RSD is like. Even when treating with a great doctor, we all need that emotional support that you can only get from people who really know what it is to live with RSD each and every day.

I to am so sorry for you and your Mom. Lots great info has already been given to, only thing I would add is the names of a few meds that you gals can research and ask informed questions about to a Dr. Cymbalta is good for pain and depression, Lyrica for the burning pain, Nortritylene for pain and depression ( can be taken with Cymbalta) and Tranadol for pain. Keeping warm is one thing that helps with my arms. Good Luck to you both. :hug:

Trudy,
Welcome to the club. You have been given some great information. I would like to add that I finally gave up in this fall and requested to be put on an antidepressent. It was truly a life savor. I was ready to cut my leg off from the pain, the financial stress doesn't help either.
It was brought up that your mom should be on 3 or more meds. BUT don't start them all at once. Maybe 1 a week. I bottomed out and became very ill when they switched all my meds. Horrible and scary.
Well feel free to rant, rave and share. :welcome_sign::welcome_sign::welcome_sign::welcome _sign::welcome_sign::welcome_sign::welcome_sign:

If your mother is near Washington DC, she can give Dr. Chin a try at the George Washington Hospital Center in NW Washington. She is head of the Pain Management department. She treated my wife who has RSD. Very sorry, and good luck.

Thank you for the ice advice. We were icing her leg/foot for a long time as this was directed by the podiatrist, but we quickly realized that he had no idea what he was talking about after many visits to him where he told my mom to stay off of it in order for it to heal. I doubt this guy even knows of RSD. Just so I can prepare myself, does RSD ever get better? Is there any hope that she will have a normal life again? She is fighting through this, but getting an appointment with a doctor is so hard and she's seen so many doctors that are no help and we're losing time. I'm doing a ton of research to try and find her a good doctor online, but it is very difficult.

Yes, stay away from ice. My podiatrist told me that ice was okay too. I had to find it out on forums and from Dr. Hooshmands site that it is not recommended. As mentioned, even many professionals do NOT understand this disorder.

Has your mother called the scheduling office to get on the cancellation list? She should consider that as if they have such a list, that could seriously shorten the wait time. It's worked many times for me. She has nothing to lose by asking them if that particular office operates with one.

In my research, you often see CRPS listed as incurable. However cases of remission are possible (more often with children), but as you already know, time is of the essence in trying to "reboot" the nervous system. I am extremely cautious in using the cure word as a true cure is not likely. But know this. It OFTEN can be managed well and you can make significant progress in the pain and suffering and many can have a reasonable quality of life.

Good luck!

So far...there is no "cure" for RSD. Remission is possible. But more important is that you need to know that even if your mom doesn't go into a full remission she can still possibly have a "normal" life if she can get proper treatment and her pain can be managed properly. Will it be the same as it was before? To be honest...unless she goes into full remission this is unlikely...but it can still be more "normal" than it is right now.

But there is not really a miracle treatment that works for everyone and even with any treatment that removes the pain (more likely that it will get to a manageable level vs. disappearing entirely) it is still a long road of physical therapy and retraining yourself to get back a lot of the function you lose when immobilized and restricted because of the pain. It is VERY hard...but when you have RSD you HAVE to make yourself MOVE the affected RSD areas. In the beginning it will probably only be very small movements and working your way up to doing more. It is a SLOW process...but it is absolutely key to getting back to a normal life.

The biggest help to me in addition to getting to the right doctor and a good physical therapist was having people around me who were supportive and love me. But in addition to just being "understanding" of what I was going through...these people also give me a great gift by treating me normal. We don't really discuss the things I can't do, or how I am "different" than before...it's more about them just supporting me through my rehab, pushing me to do the things I need to do, making me laugh and smile, and helping me to just enjoy my life. It's so easy to let yourself get down in the dumps because you are constantly in this never ending cycle of pain...but if you have people around you who can help you stay strong that's such a key part of getting back to a more normal life.

But it can be done, people do it, and if your mom can just keep it in her mind that things are not hopeless then she can get her life back then she will have something to fight for. Just be careful to not let her put all her hopes in the idea of any one treatment being this miracle cure for the pain. I did this when I got my first lumbar sympathetic block and I was SO discouraged when my pain didn't disappear after one treatment. Rather, she needs to look at all these things as stepping stones towards getting better. Each medication, each treatment, each day of physical therapy exercises...these are all things that contribute to her getting back to that normal life. It's not easy to see the daily progress...but every time she's able to do something she couldn't do last week or last month...those are things to be celebrated rather than constantly focusing on all the things that she still can't do.

So...it's not a hopeless future...but it will be a long road and (at least for me) it really helped to look at it this way so that I didn't get frustrated by the amount of time it took to get better. I'm not like I was before, but I am incredibly grateful for the things that I can do now that I couldn't do even a couple months ago. Just try to keep the focus as positive as possible.

Also...I'm not sure how mobile your mom is or what her ability to get to and from physical therapy is...but when my doctor wrote out an order for a physical therapist to come to my home...that was a godsend. This way I was given exercises and routines that I could do inside my house and that I could do on a daily basis even when the therapist wasn't there with me. For RSD, you really need to do these exercises every day. In the beginning she may not be able to do all of them every day, but at least some of them every day. It helps to have a therapist that you have a good relationship with, one who is interested in being educated about RSD, so that they can taylor the routines to your needs as the patient. Once she gets to a point where she's gotten as much as she can get out of the at home therapy, that would be a good time to discuss moving to an outpatient physical therapy program where they have equiptment (possibly a pool for water therapy) to keep progressing further.

As far as doctors go...does she have a primary care physician that she has a good relationship with? The doctor I am currently working with is not a specialist in RSD, but she is willing to do some research and read the things that I bring her, and try out different treatments for RSD. I'd seen a pain specialist who did some blocks (which made my RSD worse), I'd seen a neurologist who just kept referring me to other doctors, and been told by my current primary care doctor that unless I could hold an alignment (he referred me to a NUCCA chiropracter) then I would be stuck like this (in a wheel chair in unbearable pain) for the rest of my life. After being bounced around from one doc to the next I finally said this is enough, went to a new primary care doctor, and she has been just amazing. Got me the TENS unit I needed (helped with the pain), got me the at home physical therapy, worked with me (and continues to work with me) to get the RSD symptoms under control...she's just been wonderful and supportive. So if your mom has a good primary care doctor who would be willing to work with her while she is trying to find a good specialist, then that might at least get her headed in the right direction where a specialist could pick up from once you find one. Does that make sense? It's just I hate to hear of your mom's treatment getting delayed while she tries to find a doctor who can help her.