Hi all
Sorry I haven't posted here much lately but I thought I'd fill you in on the details of our latest hospital appointment and ask a few questions (as always)
As you will be aware, over the past few weeks we have been becomming increasingly worried about Alisons balance and coordination problems, though we are extremely thankful that her hand is now recovering from a flare
That said, for the past 10 weeks the hospital have forgotten all about her leg and basically passed off the balance and coordnation problems as a confinece or psychological issue
Over the past week Alisons underlying pain has increased and I expressed my concerns to the hospital about the need to revisit her medication and to look at the coordination problems more closely
Yesterday I noticed that the physio had slightly changed her opinion about the cause - stating that it may now be as the result of some "protection" mechanism that is currently out of Alisons control (Your thoughts please ???)
Basically the physio said that because the whole of the foot apart from the heel is painful, as soon as Alison goes to put the heel to the floor, the protection mechanism makes her leg shoot outwards to avoid contact with the floor
I can see some of her thinking behind this but why does this not then happen when she places pressure on the leg to stand for transferring, or when sitting
She basically said the diagnosis was really scary and this was possibly the trigger point (Again have you heard of this ???)
Basically, as a family we all know the exact trigger point - it was the bier block (guanethedine) carried out on the 4th July, though noone will believe us. It seems too much of a coincidence for there not to be some link to the coordiantion and balnce problems we are now seeing
Alison walked around the hospital on crutches for the 4-5 days before this was carried out - and really long distances at times. She even walked to theatre. The problem became apparent the minute she attempted to get back on her crutches after the block - her balance and coordination had gone and she just couldn't get moving no matter how desperately she tried.
The hospital still don't accept the block did anything as they have never seen this happen to anyone else - but thats a bit of a lie on their part as Alisons classmate had the same type of block done by the same consultant a couple of months before and her foot turned inwards, she couldn't walk and her leg discoloured (she had to be placed in plaster to get her sorted out and still has a slight deformity to the foot now )
The consultant refuses to accept the block could be a trigger and the physio says its not possible as Alison leg muscles are too strong / rigid and the block should have worn off by now
Looked at a leaflet provided by another hospital in the UK who carry out these types of blocks and they cite permanent or temporary muscle weakness as a side effect !!! Is it possible to have muscle weakness in muscles overworked by dystonia ????
I've also read that it is not unlikely to have strong muscles coupled with severe spasms and cooridnation and movement disorders but try as I might I cannot get anyone at our Pain Management Unit to even discuss this as it always gets dismissed out of hand
Alison has lost all faith in the staff at the hospital and myself and the rest of the family are rapidly doing the same.
Do you think I am right to be concerned or should we stick it out without seeking a second opinion ?????
Many thanks
Andrea

I would definately seek another opinion. My thing is with Drs. on RSD is even if they are known to know a lot about it, they don't always. Even if you have a Dr. you like, if they aren't doing what they need to do for you then find one that will.

As far as the block, I had a side effect from the 3rd one and we stopped. I chalked it up to a panic attack. The Dr. decided to quit them for awhile BUT, the 3 I had helped me immensly. Anything is possible with anything in life. I hate it when people tell me something couldn't have happened from something else. That block could have caused her this problem. Also the meds used could have caused a problem.

Do the Drs. know that Allison knows this happened to a classmate? I would venture to say they don't so they think by trying to convince you that it can't happen, you have no way of knowing different. Drs. don't think about us getting out and meeting others who have gone through the same thing or on the internet so they think we have to take them at their word. After what I went through to get to where I am today, I am not one to trust Drs. too much. I have a lineup of good ones that it took me forever to find so there are good ones out there. That's why I encourage people to go to another one if they aren't getting the results they want.

I can imagine what Allison is going through. Most can here, all they have to do is remember what they are going through now or have gone through trying to get the RSD under some kind of control.

I do hope she gets the help she needs to get better. I hope she finally finds a Dr. that will do what she needs done.

As far as the protection mechanism, I think we do try to protect the part of us that is giving us the problem but the reason we do it is because we do have the problem and we don't want to make it worse.

I don't lift my arms over my head, I don't do anything that would mess my arms up anymore then what they already are. Same with my foot. I try to protect it from something making it worse. The RSD and pain is still there, why shouldn't we try to protect the injured areas?

Good luck with getting her better. She will get there. Don't lose your faith and don't give up. I know you won't though.

Ada

Andrea,
I have had balance problems for a while now. I had 4 bier blocks years ago but didn't have any problems. (god bless allison for being able to go through with the block). My balance problems started 2 yrs. ago. I think that my leg is not strong enough for me to walk without a problem. I have fallen many times from losing my balance. I now use crutches for safety issuses. I hope that you get the answers you need. I always think of Ali and am so sad that at her age she has to go through this. Give her my best.

Sue K

Hi there. I am new to this and have only talked with Alison a couple of times but feel for her greatly.

I have only had this diagnosis for a month now and experienced issues from it for two months. I did notice lately that I have been a little off balance but I chalked it up to the meds. Yet, I did notice that when my pain is more intense my sense of balance is definately worse. Did Alison have headaches or migranes when this all came on or notice headaches before taking any meds? Just curious because my migranes stopped with meds. Sorry, I forgot to mention I also have CRPS in my lower left leg/ankle/foot.

I should mention that as difficult as it is. Assistive devices should be used to a minimum, mostly this line of thinking is so as to keep the affected area moving and the pt free from dependence. Unfortunately, Allison, from what I understand can't go without them. I kept my crutches or at least one for about a month but got a lot more mobility and movement and strength when I stopped using them. It all did happen very quickly for me. While I state information from other sources, I am also finding that despite my efforts to keep my limbs moving my arms, potenially though not yet diagnosed as having CRPS, want to stiffen up on me.

I am sorry I can't be of more help. Have you tried looking into other healthboards to see if anyone there has had similar experiences with the blocks?

Best wishes and prayers for you Ali....J

Hi its Alison here,

Many thanks for your reply.
I am sorry that you are dealing with this horrible illness

We have spoken to many people who suffer from RSD that have severe balance problems, I understand that a side effect of the Block I had is balance problems. My mom is going to see my PM doctor on Wednesday whilst I have my physiotherapy session so she will discuss it with him then. I am hoping to get a referal to another PM doctor because I am sick of my doctor not believing my balance problem - why does he think that I would make it up when all I want to do is get better??

No, I can not stand or walk without crutches, I need 2 elbow crutches and my mom standing behind me to catch me when I fall

Yes I do get headaches with RSD, I think that the medication causes them and also the pain. I still get headaches even though I am on Tramadol and Lyrica. I also get constipation (yes I know discusting) and belly aches.

I hope you are feeling better
Many thanks for your help
Alison

Hi All thanks for your replies, its Alison here

Sue,
Many thanks for all your support. The more research me and my mom are doing the more I understand that many people with RSD suffer from balance problems. I am fed up of my PM doctor saying that I am making the balance problem up when I am not. I also understand that Guanethidine blocks can cause balance loss. My PM doctor does not like me and my mom researching about RSD, he says that it is scaring me!
Thanks for your best wishes
Love Alison

Ada,
Many thanks for all you support too - I really appriciate it.
No my PM does not know that I know that my friend had problems from her block, although I have spoken to my Physiotherapist about it. I totally agree with what you are saying and we are going to seek a second opinion on the balance problem.
I hope you are feeling better, take care
Alison

Many thanks again
Pain free hugs
Alison

I had one doctor who insisted that my muscle shakiness and balance problems were "muscle guarding". It went on for months and just got worse and worse. After I left my pediatric doctor who said that, I found a great experienced neurologist who said I was suffering from severe tremors. Search for tremors on google, and you should be able to find some information and see if it fits what Ali is going through. I shake all over and sometimes my limbs jerk suddenly. I still cannot walk unassisted but I have gotten somewhat better with Baclofen to calm down my muscles. I know Ali was on Baclofen before, but perhaps she needs a different dose or another muscle relaxant?

Hope this helps you. Many ((pain free hugs)) to you, Ali.

Hi Vanessa, its Alison here,
Thanks for all your help and advice. My PM doctor took me off Baclofen because I could not take it whilst taking Lyrica, and he also said that it was not doing anything for the tremors. I want to try another muscle relaxant, but my PM doctors not said anything about trying something else.
It seems that many people suffer from balance problems with RSD, I am going to should my doctor all the research we have done and see what he says.
Pain free hugs
How are you?
Take care
Alison

You are very welcome, Ali. I have been through so much and just want to share my experience in hopes it will help you in some way.

Hmm... that is interesting! I have been on both Lyrica and Baclofen together. Since you said that I looked it up on drugs.com and it does say that there are moderate interactions... but I guess that is the risk we take sometimes. I thought it was interesting so I am posting the link: http://www.drugs.com/drug-interactio...en_d00967.html

Thinking of you