Seeing Consultant to Discuss Concerns - Advice Wanted
 

As many of you will be aware myself and Alison have been worried about her PM treatment at our local childrens hospital. Alison has lost all confidence in the PMT and hates the thought of attending her appointments
Our major concerns are as follows:

:mad:Alison had a nerve block on 4th July and has been unable to walk since then (loss of balance and coordination). The hospital can't see this as a turning point - they basically put it down to confidence and psychological issues and our consultant says that he has never seen this happen before. The strange thing is that a friend of Alisons had a nerve block done by him two months previously and her foot rotated inwards, her leg turned blue and she had to be placed in a cast for nearly a month. Had we have known about this before hand we wouldn't have given him permission to do the block without careful consideration. It only came to light when I met her mother and was discussing what had happened to Alison.

:mad:Medication - Alison had been prescribed Amitriptyline in the early days and it did nothing for her. I told the consultant this but his advice was that the dosage had not been high enough. As a consequence Alison developed severe blurred vision and had a fall which meant the RSD spread to her arm (luckily now much recovered after 10 weeks intensive therapy at home). I sometimes worry about the level of these drugs that he is prescribing for a child and also the rapid increase in dosages over a period of a few days
Alison was also taken off Baclofen about a month ago as the Consultant wondered if it was causing tension in her muscles. I thought Baclofen was a muscle relaxant so did question this at the time but was told it can affect patients both ways. I do wonder if this is connected to the increase in pain if the muscles are now contracting more and causing the pain to worsen

:mad:Forget the leg - lets concentrate on the arm !!! For the whole of the ten weeks when the arm was painful and dystonic the staff completely forgot about Alisons leg. It was as though they knew there was nothing they could do so they focussed on something else. Luckily I kept Alison weight bearing as much as I could so things didn't worsen. We are told that if she puts some weight through her heel it will stop the spasms but Alison has been doing this for the last four months and if anything they have increased in frequncy and duration

:mad:Progress - My MAJOR concern or wish if you like is that Alison had never been admitted into this particular hospitals care. Basically she walked into the hospital on crutches with a pain score of 7 out of ten and now cannot walk and has a pain score of 9. It sometimes makes me wonder if she would still be walking without the block and their intervention. Alison just wants to get back to where she was at the start but four months on we are in a worse situation that we were on admission

:mad:Recovery / Remission Rates - As you would expect, I ask our PMT about these all the time and the resonses vary depending on the direction of the wind !!! I cannot pin them down to any quantifiable figures - ie how many children have gone into remission, how many have improved slightly, how many still have flares or have worsened. They want us to speak to other young people and their families but I do not belive I will get a balance opinion as they only want to put us in contact with the success stories and not the ones receiving ongoing treatment. They also only treat 2 patients a year with RSD so it does concern me as to the level of experience they have in dealing with my daughters case - in particular the violent spasms and dystonia (which the consultant admits to seeing only once before)

I would basically like to seek a second opinion elsewhere, particularly at a centre who treat more than 2 patients a year with RSD. The stumbling block is that Alison is only 12 and must stay under the care of one of our childrens hospitals so we need to convince someone to allow us to seek a second opinion form an adult unit !!!
I need to go into Wednesdays meeting with a clear head and a rational approach. At the moment I am so upset for my daughter and the fact that I took her to a hospital expecting them to make her better but that she has, in fact, got worse
How would you approach this and do you think my worries are realistic

Any advice would be welcome - particularly from people who have sought or are actively seeking a second opinion

Many thanks
Andrea

:confused:


Hi Andrea,

I am sorry I can't help you with places and people over there in the UK but I do strongly support your decision to seek another opinion.
She is not getting the care she needs and definitely needs the help of a Pain Management Team who specialises in RSD/CRPS.
I am sure there must be somewhere to go, I hope somebody can help her.
Fingers crossed for you both
Love Tayla:hug:

Hi - its Alison here,
Many thanks for your reply Tayla4me.
I am having my Physiotherapy session whilst my mom is seeing my PM doctor. Do you think me and my mom should cancel the appointment with my Physiotherapist so that I can go and see my PM doctor? or shall I just go to my Physiotherapy session and not see my doctor? I am not sure whether my PM doctor wants to see me.
Many thanks
Alison

hmm..
 

Alison Hi hon,

I think mabie you should go to the PT apointment this time.. the doc will talk to your mom and she will tell you what he says, and mabie ask your mom to ask that they make an apointment to see you if/because you want to see him.. but some docs won't say much in front of a child.. I think because alot of kids arent as mature as you are Ali, I think you must have been a pretty sensible girl even before the accident.. but a condition like this makes you grow up far too soon methinks aye? Keep up the research and hunt for answers you probibly will know more than the doc soon, so you know what to ask him and you know whats rubish.

Mabie your mom can call and speak to another doctor on your behalf.. let me do some brainstorming and I will PM you a few Dr's names and numbers that may help or have advice for you.

hugz lil bud,
Sandra

Hi Sandel,
Thanks for your advice. I am really hoping to find another PM doctor, I live in the UK.
Most of my family say that I am sensible, I probably agree. I have hardly ever being a child who causes trouble. I have loads of supportive friends and family who are great, they help me a lot. I don't know what I would do without my mom. I agree RSD does make you grow up faster than you should.
Thanks for your help and I hope that you are Ok.
Take care hun
Love
Alison
-x-

Hey.

I am not familiar with places in the uk. But if there is a rehabilitation hospital for stroke victims/brain injuries/spinal injuries/etc (just more severe injuries, not just broken bones), I would try there. I went to one and they weren't 100% familiar with rsd but sometimes something similar to rsd forms to some stroke victims. And typically, pts and ots in that environment are better prepared for more difficult cases.

I dont want to lie so I will be honest with you, I went to one and yes, I got out of the wheelchair and can walk, but I am still in tons of pain and I limp really bad and my limbs freeze up all the time. but they were comparing my rsd to the previous girl who had rsd in her left foot who got a dvd on the pt treatments of rsd and it was a 2 week program. she brought the dvd to this rehab place and she completed the program in 2 weeks. But the dvd was AWFUL!!!!!!!!! it made it totally seem as if all kids with rsd are pretty much really whiny and faking it and the kids were running and jumping after like 2 hours into the therapy. They were kinda expecting me to be the same way and realized once I got there that hmm, maybe im not faking this :o but it took me like 4 months and they discharged me and said they did all they could do (had an immoble hand, 5 immoble toes, and one of my legs was acting up really bad and throwing me to the ground). but they just went by a pure rsd dx when there was more than that. and yes, my rsd spread to nearly full body after starting there (was originally my 4 limbs).

but they really were good there. it helped me being around others (not children) that all had diff. problems that we couldnt fully understand but we all bonded (if that makes sense). my friends there were all older than me (ranged from 18-86) and we all had different injuries but we all understood eachother and bonded instantly. they made getting through the sessions easier. if i didnt feel like going (which happened like everyday), they were the reasons i went. and they help if you get out of doing some things :D they would "accidently" misplace the buckets i used for contrast baths, keep the therapists busy so it would cut into my session a little bit, need me to help them do something, etc and i would do the same for them. haha, we were terrible. once, the pt had to separate me and mr harper (stroke) bc they realized we were up to something. but make sure if you go somewhere, have other people there. it helps a ton. and helps you adjust to people asking you whats wrong.


I hope this helps. Sorry if it doesn't. Good luck to both of you though.

Nikki

Oh Ali, how confusing for you:confused:
I would give the doctor a very wide berth if he/she is not helping you and in fact hindering your progress, whether physical or psychological!
I hope someone here can steer you to a PMT who really knows RSD/CRPS.
Maybe your physio might know someone?
I have read some papers from a doctor at Great Ormond St 's pain clinic, are they within your reach or have you already had experiences with them ?
Take care
Tayla:hug:

[The stumbling block is that Alison is only 12 and must stay under the care of one of our children's hospitals so we need to convince someone to allow us to seek a second opinion form an adult unit !!!]

This made me think that maybe a letter, with copies sent to members in your government, or the hospital management, { anyone that might be able to pull some strings} with an explanation of Alison's rare and unusual health situation{ and the speed at with it seems to be progressing} etc, and then requesting that she be allowed to use the adult services for better care...??

Like in the USA we can write to our senators & representatives of our own state government or the Federal gov.

I don't know how the UK system is set up.

I did search this - "UK government websites"
http://www.google.com/search?hl=en&s...bsites&spell=1

Hi Andrea and Ali,

I started to reply to you and the next thing I knew it had grown out of control; it may have been 1500 words and I wasn't half-finished. I tend to be wordy. I deleted it, but I'm wondering if my unkind words about something a physician said might still have you angry. I see that Ali has said some very kind and thoughtful things to me, so I know that if you're angry, you aren't teaching it to her.

Anyway that reply is gone, and I'm tired from writing it, so I want to focus on just one part of one paragraph that you wrote: Luckily I kept Alison weight bearing as much as I could so things didn't worsen.

I think the next words you wrote were a secret message to yourself: We are told that if she puts some weight through her heel it will stop the spasms but Alison has been doing this for the last four months and if anything they have increased in frequncy and duration

I think most people would have given up after trying anything for four months and seeing the problem worsen, so I think its ok to notice that things aren't working out the way you had hoped.

I also think that if my words here are successful they will generate a discussion of physical therapy. I'm not quite hijacking you, because I think you already suspect it is making things worse.

I think you should hear about this from as many people as possible, both pro and con. Learning from other RSD people's experiences should help you sort out the disconnect between what "they" tell you, and what you see.

I, of course, hope the discussion will lead you to rethink the actual cost/benefit ratio of physiotherapy. (Part of the costs are the damage the terrorists posing as therapists are doing)...Vic

Thanks Vicc
As I said in my PM I really do apologise if I upset you about the comments on Alisons Physician. I am certainly not angry with you at all. We are all entitled to our own opinions and at the time I would have believed anything the Consultant told me as I was hanging onto his every word believing he could put the disease into remission within a matter of weeks / months
As time has gone on and from bitter experience with regard to the treatment regimes at our local Childrens Hospital I now realise these people are totally out of their depth. They only see 2 cases a year and cannot provide any accurate statistics on remission rates, duration of symptoms etc.
It has made me realise that the support groups and the wonderful people on there are much better equipped to advise us on the best ways forward.
I should have realised that PT would not help Alison as it was intensive PT which caused the ankle to go into eversion in the first place, but these people do their best to convince you that they are much more knowledgeable than any of us mere mortals ever will be
Any advice you could give would be most welcome as I am aware that you have researched this subject extensively and will probably have more idea of what is happening in Alisons case that her own Consultant
Please do not think that I am mad at you, I really do respect your opinion, especially on finding a way forward through the minefield that is the UKs wonderful NHS system where we are TOLD what we treatments we can have and who we can see and cannot have the freedom of choice to select the best possible treatment without a lenghty fight with our Primary Care Trust
I always read your posts with interest and as a very concerned parent would love to hear anything you have to say with regard to Alisons situation, particularly the problems seen immediately after the bier block
Many thanks
Andrea

Thanks to everyone for your positive replies
I thought it would be helpful if I posted a photo of Alisons leg so you have some idea of how the RSD affects her (Though Alison will never forgive me for showing her unshaven legs to the world !!!)
I obviously do not have to point out which leg is affected by RSD
Unfortunately you cannot see the spasms which come every couple of minutes and last for a similar length of time,and cause her toes to twitch uncontrollably. I am hoping to take some video and post a link at some point as it may be useful to some of you to see what these look like and to understand my concerns
http://i243.photobucket.com/albums/f...9/CIMG1763.jpg
Thanks again
Andrea

Hi Andrea,

This is certainly a difficult positin to be in. So many people, so many opinions!
The doctor does seem to be on the right track BUT if Allison does not trust him it will never work.
She needs to be able to completely believe that he and his team will make her better.
Because she is young and by the look of the photo she has no obvious limb or ankle deformity, I am sure she can get better.

The "no pain no gain issue" continues to be a very contentious issue.
The belief that we can be cured without pain seems to be an impossible task but only we can say how much pain we are prepared to endure to get a positive outcome.
If I can refer to the video of Alissa where she speaks of the pain she had getting better but she holds no grudges because of the outcome.
The big question is how do you get your head around that?? Especially when the patient is a child!
I do believe that a multidisciplanory approach such as the one shown in Alissa's clip or the one at Great Ormond St where there is psych, OT, PT and the doctors all on hand is the way to go.I also think that mixing with other sick adolescents would also be beneficial. The encouragement that they give to each other is nothing that can be duplicated by the family alone.
My heart goes out to you both, this is a tough battle for you but I truly believe it will be one you can win.
Wishing you much luck
Tayla:hug:

Hi Andrea and Alison.. wow that foot looks familiar
 

Hey Ali my ankle does thay too,, it started out just in an L position with alot of muscle tension from the lateral muscle below my knee.. I manage to relax that some and now my big toe wants to point down and other toes up.. causes a twisting in my foot similar to yours.. my swellings not so bad though you need to keep those legs elevated as much as possible and higher than your heart alot.. it has helped me alot.

Andrea my RSD may have spread origionaly from a too vigorus physio therapy, but the therapist decided I needed DEEP tissue massage to combat the hard swelling, but she did her best to stick her thumbs into my shin bone from the back of my calfs .. it caused my RSD to flare and spread nasty. On the other hand I have heard many storys of remission with just PT I realy don't know what to think anymore.. I know this dosn't help much, it is just such a rotten nasty condition for any of us let alone a kid.

Physio seems to help alot when it is done right.. so many of these procedures done to help us have actualy caused more problems.. starting back when the ice was origionaly applied. Mabie talk to some of whom it has helped and find out exactly what exercises helped.. and talk to those that had bad experience and find out what not to do. Because we do have to continue to exercise and to bear weight on the RSD limb acording to everything I have read, so try to find a routine that she can work with at home starting with baby stretches of her limbs in all directions.. I do exrecises every day to keep my dystonia and tightness from getting worse and especialy so I dont hurt mysely if I overextend myself accidentaly.

Use it or loose it I tend to think, but go easy.. baby steps..

big hugz,
Sandra

Thanks all
Just to point out that the picture doesn't show the ankle rotation that well, especially given the position of Alisons other foot.
If you were to look at the legs front on you would notice that the left ankle is rotated outwards at about a 70 degree angle
The physios tried everything in the early days to stop this rotation (before diagnosis) but each time they got it back to lateral it rotated out a few degrees more until it "locked" in the position it is in now and refused to move at all

hey ali i have a couple of thoughts
1st in my pt office they had one female for lower body and one male for upper body who were very knowledgable. you may want to see if someone at your therapy facility (or one nearby if your system allows it).
2nd at this point you are so unimpressed by the dr. that need to make a change if you have any hope of improvement. you are so worried (rightly so) that he has so little knowledge he is actually hurting rather than help you, and i am fairly certain the doctor has given up on working to help you because of the obvious lack of improvement. he probably sees the pt reports and thinks that you show up but wont do any of the excersizes because that seems to be the message your pt (until recently) has implied.
because crps is such a difficult disease the only way for you to improve is for you to have total faith in your doctor and your pt...you lost both of those a long time ago. as a result you dont trust them and they interpret that as some one who has no desire to improve (which we all know you are not).
i know your government program will make it a challenge to find someone else but i think you need to sit down and have a serious discussion in which both you and your mom discuss your serious concerns with the the behavior of the doctor (refusing to even consider that the block may be the source of the problem), the PTs who for so long told you it was all in your head which provides insight into their lack of knowledge of the disease.
the fact that you were able to desentitize your hand not through pt but at home with your dog shows that they were less creative/knowledgable as you are. there is some arguement but most doctors with lots of experience with crps will say that if one area can be successfully desentitized than there is a better chance that to some degree other areas should also experience improvement. since crps is a centeral nervous system related disease it has similar properties throughout the body. in your case there may be no improvement in your foot because the injection exacerbated something that hasnt properly healed.
if for no other reason than your foot became a problem immediately following the block and everyone you have encountered seems so willing to simply accept the doctors word that it wasnt the result of anything he did you should be allowed to at least see a different doctor in the pursuit of the some answers.
i know it feels like you are a gerbil stuck on the wheel, its time to slam on the brakes get off the wall and slam on the glass until someone takes notice of your presence.
good luck, i hope you find the answers you so desperately deserve

Hi Andrea,

Well, we can set aside any fears than anyone is mad at anyone.

You wrote: As time has gone on and from bitter experience with regard to the treatment regimes at our local Childrens Hospital I now realise these people are totally out of their depth. They only see 2 cases a year and cannot provide any accurate statistics on remission rates, duration of symptoms etc.

You aren’t simply describing problems with that particular hospital: No one can tell you about remission rates; duration of symptoms; or anything else about this disease. Such research has never been done. In fact, it would be hard to find a disease less researched than RSD.

In place of research we have countless case studies reporting near-miraculous remissions by using a variety of drugs and therapies, but none of these miracles have been replicated, nor have any of these therapies been adopted by a significant number of clinicians.

Everyone agrees that some sort of nerve dysfunction lies at the heart, but there isn’t any agreement over which nerves, or even which nervous systems are involved. The fact is that neurological dysfunctions have been identified in both sympathetic and peripheral nerves, but none of these dysfunctions have been shown to be able to cause RSD. Everyone agrees that some sort of nerve dysfunction causes this disease, but no on can tell us what or how.

My bias is clear: I believe RSD is an ischemia-reperfusion injury (IRI), and that IRI can explain every sign and symptom of this disease, including sympathetic and peripheral nerve dysfunction; I can’t divorce my views from my discussion about Alison, but I’ve spoken of them in the past and will in the future, so I’ll try to stay as clear as possible from them here; but you should know where I’m coming from.

I think Ali’s greatest hope for remission comes from her youth, not from anything medicine can do for her today; I believe that vigorous exercise, especially involving weight-bearing, is harmful to everyone diagnosed with RSD, and; I believe the best way to reach decisions about treatment options is a combination of what has been demonstrated by research, reports from others with this diagnosis, and personal experience.

There isn’t much in the way of research. This is partly the result of inadequate funding, but also because no one has bothered to design research that could tell us something useful without costing a ton of money. I’ll use two examples that combine all of what I’ve said thus far, and that directly address what Ali confronts today: Physical therapy (PT) and pain relief.

Physical therapy has been a modality of choice since Weir Mitchell discovered the disease during the Civil War (1863); when sergeants, and doctors told soldiers to “walk it off”. It works most of the time, especially with young healthy adults in the prime of life, and there has been research showing how it helps patients with acute injuries. There is no research, however, showing that it helps people with RSD.

Over my ten years of talking to RSD people, I have found few who report that PT helped them. (It’s true that people who get better, drop out; so that element who may have improved by PT aren’t here to tell us that, but we can only speculate about how many that might be). A few people have said they improved after intensive PT, but the majority I’ve talked to say otherwise. I think that is true here at NT.

Ali’s personal experience has been that after four months of intensive, weight-bearing PT, she is worse, not better. As I said before, the proof is there before you.

There is another thread on page 1 today that talks about PT helping someone near Alison’s age, but it contradicts the experience of others, and her remission is better explained by other evidence: Children and teens appear to have greater hope for remission than older RSD patients. If RSD is an IRI, the case can be made that this girl improved despite – not because of – physical therapy.

I know you are worried about the possibility that Alison may eventually need large doses of opiates to control her pain. It is something nearly all of us fear in our own lives, but for many opiates can’t be avoided. Pain is worse than opiates. It is more physically destructive and more emotionally devastating. Even if opiates do become necessary, there is a way to limit the need for them:

In another thread, you wrote: With regard to the pain, he has suggested that we increase the Lyrica as Alison seems quite OK with that and she does have a lot of side effects with some other meds we have tried.

There is no research specific to RSD, but GABAergic drugs like Lyrica have been shown to be effective in reducing many types of neuropathic pain, and many RSD people say it helps relieve our pain. In the 2nd post in my thread, Facts you may not know about RSD, I wrote about its mechanism of action in ischemic pain; even if I’m wrong and hypoxia doesn’t cause RSD pain, GABAs do relieve our pain.

For this reason alone, every effort should be made to find the most appropriate GABA and its most effective dosage. Lyrica seems to work well for Ali, so I think the focus should now be on using it to provide maximal pain relief. Until a cure can be found, pain control is the most important way a physician can help an RSD patient.

You mentioned amitriptyline, but I honestly don’t see much use for this drug. It seems to me to be prescribed in the hope that it will help and thus avoid the need for opiates, but I haven’t seen many reports from RSD people praising this drug. My doc and I tried it (both for the RSD and the nerve damage pain), and it didn’t help, so he stopped prescribing it.

Ketamine has been shown to be useful for some patients, but I believe claims for its efficacy have been exaggerated: See post #19 on the thread Fact, fiction and RSD, where I discuss “irregularities” in a journal article touting the wonders of outpatient ketamine infusions. Still, there have been successes, and if I didn’t believe hyperbaric oxygen (HBO) offered a greater hope for success I would certainly consider it.

As I said earlier, Alison’s greatest hope for remission lies in her youth, and I pray it will be sufficient. I think you are wise in hoping for the best but preparing for a long fight with this disease. In my fight against RSD, I have chosen to limit PT to range-of-motion exercises and GABA drugs.

I also use grape seed extract to continue to delay symptom migration. It is the least expensive powerful antioxidant available, and antioxidants are the universal precaution against IRI. I believe they are equally effective in preventing RSD from passing from the acute to the chronic stage. I also wish the Dutch researchers who first published research into the antioxidant DMSO would initiate research into a more powerful systemic antioxidant and report on that.

Meanwhile, I hope you will continue to question the value of weight-bearing exercise (yes, even walking) when it causes severe pain; that you will urge Ali’s physician to try for optimal pain relief through Lyrica, and; after reading a couple of your more recent posts, continue grape seed extract.

These were my choices, and I still have full range-of-motion in both ankles, could walk (except when it became severely painful) until atrophy from other nerve damage made walking unsafe, and received adequate RSD pain relief from a GABA drug.

I will continue to pray for you and your family, and I will continue working on the series of posts I have promised for so long. It is my hope that others here will find enough in the words I write to justify studying IRI for themselves. When/if that happens, I know I will begin to see people I care about find relief from this awful disease…Vic

P.S. At BrainTalk I managed to end my posts within the 1,000 word limit, but I seem to take full liberty with the lengthy posts allowed here: this one is nearly 1400 words. I like to talk…Vic


The simplest way to find the posts I mentioned above is to click on my name, select “view user profile”, then “find all threads posted by Vicc”. Scroll down to that thread, then go to the post number I cite.