Hi everyone - it's Alison's mom here,
Thought I'd let you know how we went on with the new Pain Doctor
We were really lucky yesterday - the person in front of us was a no-show so we had nearly 2 hours with the staff
They ran through the whole of Ali's history to date and treatments so far and explained a little more about what CRPS is and why certain treatments can be useful.
They basically reitterated that Ali's best chance of recovery lies with an intensive PT course but took on board our concerns with the way in which physio has been handled so far and also the lack of input from Psycholgists with regard to "Coping" skills.
Dr Howard (Alison's new PM doctor) will be making an appointment for Ali to undergo a full assessment by the hospitals physiotherapy (PT) team who specialise in CRPS - just as soon as she has recovered from the toenail removal (Dr Howard has warned us that this will quite likely cause an increase in pain for a number of days, given the reaction of Alisons leg to the nerve block)
Following on from that Ali will more than likely be invited to take part in one of their (minimum) two week PT courses or alernatively a course will be tailored for us at our local hospital (though this is unlikely as they do not have the facilities to provide 14 days of intensive treatment)
Although no-one can promise this will be a cure, Dr Howard is confident that it may prove to be a turning point in seeing some improvement in mobility etc
We both came away feeling much more positive about the future
Love
Andrea

Oh Andrea that is such postive news!!!

I am soooooo happy for Alison!!!!


BIG but gentle HUGS to you both!!!!


Abbie

You sound like this was a very good visit. I am so happy for you two.

It sounds like they are going to follow through with checking all of the things that might help Ali to get better.

Keep us up on how things are going.


Ada

Hi Andrea and Alison,

I am so happy that your appointment went well and that the intense physical therapy has been recommended!! I hope everything goes well with the toe surgery - I wish you all the best Alison - you'll be running around in no time.

love,
terry

I haven't talked to ya'll too much & it is heartbreaking what Ali is & has gone thru with pain. I may have missed a post but are they going to remove her whole toenail or just part of it? I have had both, partial nail one on my big toe & a whole nail on the toe next to a big one. They both do hurt & this was years & years before I had RSD. So hang in there sweetie. And if it hurts bad enough be sure to tell your Mom so she help you thru it with meds. I will be praying that it does not make your RSD worse.

And the one thing you do have going for you is your age. Hoepfully with the new doctor & Physical therapy they want you to go thru you will come out the other side a well & totally healthy young woman. I will pray for this also.

I just wanted to let you know even tho some of us haven't said anything before does not mean we are not on your side 150%+ OK? And Happy Belated Birthday. You turned into an offcial teenager when you hit 13 kiddo!!

Lots of soft gentle hugs,
DebbyV

ps:I also have RSD in both of my feet & ankles & it started in '03 & was dx'ed in '04.

Please give your daugher my love and tell her I will have her in my prayers during and after her surgery. I hate to hear she has to have her toenail removed- Im worried about the post surgery pain for her. The new doctor does sound good-intensive physical therapy sounds scary with RSD but since they are specialist I am sure they do not mean no pain no gain right?
I know she is very brave and I will be rooting for her! Take care and thank you for keeping us updated. The very best to you too through this Andrea. Sincerely, CZ I miss Allisons posts, please let her know

Thanks for all of your good wishes - it really helps us to know there are people out there who care!!!!
Alison is scheduled to have just the part of the toenail taken off that is currently causing the infection
In the six weeks since we saw the surgeon and have been waiting for our theatre slot, Ali's nail has become even more curved - the nearest I can descripe it is that it seems to be growing in a U-Shape and she now feels a little pain down the other side of the toe
Hopefully we will get time to talk to the surgeon before her theatre slot to discuss options
He did mention that once Alison is under general anaesthetic and he can look at the toe more closely he may have to change treatment options
From our point of view if there is any chance of the nail becomming ingrown at the other side, we both feel it would be better to take off a strip of nail along each side, or alternatively take off the whole nail. At least this would save the time, waiting, agony and expense of a further op to remove another ingrown nail in the future
Alisons pain Management Team have organised for her to stay in hospital overnight so that they can provide morphine and monitor her pain levels before she is discharged
I'll let you know how we go on

Hope to speak soon with good news
Andrea