[smurff]

Hi, it has been a while since i have browsed and much has happened. I was dx in 05 with Parkinson's, then at the same time, Acromegaly and surgical removal of pituitary tumour. Then 6 month later and within a year of each other, both knees totally replaced. Now i seem to be experiencing awful pain in my feet, on the soles which turn red, hot and sore, as well as toes, now spreading up my legs and causing much pain in the knees and thighs. I do have a real problem in one of the (new) knees and may have to have further surgery as soon as i can cope. My neurologist says the foot business is P's related, another doctor said it's not. I am getting very scared as i have rigidity again (from Parkinson's) and drugs have been increased this week but so far no improvement. I have gone from being such an active person always on the go to nearly house bound, i don't want to live like this. Am taking Lyrica 75mg at night but have also got Gaberpentin which i think i will start taking as it is supposed to be better than Lyrica. Is any of this stuff going to go away?? It is so miserable. Can anyone suggest anything? Smurff

[AintSoBad]

I had to look up Acromegaly. Was the surgery successful? (Pituitary tumor). The issues with your feet may be RSD related, did you have that before? It may have been brought on by the knee surgeries. It may be neuropathy of some sort. I have it as well, the burning red feet.
These are just some thoughts, I am not a doctor!
Let us know your rsd history, if any!

Wish you the best!

Pete

[smurff]

Originally Posted by AintSoBad

I had to look up Acromegaly. Was the surgery successful? (Pituitary tumor). The issues with your feet may be RSD related, did you have that before? It may have been brought on by the knee surgeries. It may be neuropathy of some sort. I have it as well, the burning red feet.
These are just some thoughts, I am not a doctor!
Let us know your rsd history, if any!

Wish you the best!

Pete

Hi! You ask for my RSD history, i had never heard of this before i came across it on this site!! All i know is that i did have hot feet from time to time over the years, but lots of my friends did too and we put it down to hormones! It was never accompanied by a change in colour or skin sensation or texture NOR PAIN!! Regarding the acromegaly, i am deemed to be 'cured' by doctors, but according to the Pituitary Network Organisation in the USA once an acromegalic, always an acromegalic there is no such thing as cured. I do see a link between the surgeries for my knee replacements and this present situation i currently experience. I am somewhat concerned that if i have to undergo revision surgery on the knee further damage may occur to the nerves when they apply a tourniquet for the duration of the surgery. This cannot be good for the nerves surely! Meanwhile i will continue to learn about RSD!! Regards
Smurff

[smurff]

Originally Posted by smurff

Hi! You ask for my RSD history, i had never heard of this before i came across it on this site!! All i know is that i did have hot feet from time to time over the years, but lots of my friends did too and we put it down to hormones! It was never accompanied by a change in colour or skin sensation or texture NOR PAIN!! Regarding the acromegaly, i am deemed to be 'cured' by doctors, but according to the Pituitary Network Organisation in the USA once an acromegalic, always an acromegalic there is no such thing as cured. I do see a link between the surgeries for my knee replacements and this present situation i currently experience. I am somewhat concerned that if i have to undergo revision surgery on the knee further damage may occur to the nerves when they apply a tourniquet for the duration of the surgery. This cannot be good for the nerves surely! Meanwhile i will continue to learn about RSD!! Regards
Smurff

Further to my previous message, it looks more than likely i will have to have further repeat surgery on my knee,,, should i mention to surgeon the problem with the feet and are there any special procedures they have to undertake to prevent further nerve damage? A tourniquet is applied for the duration of the surgery so that the surgeon can work in a bloodless field...this has to be bad for the nerves. I am quite concerned at making matters worse!!

[AintSoBad]

Yes, you should find a doc (a neurologist perhaps) that knows and deals with RSD ASASP!!!
Get it diagnosed, or ruled out Before your surgery.

The anesthesiologist should be aware if you have RSD, there are certain protocols (such as using ketmine) during the surgery, if RSD is present.

You've really got to get moving on the RSD, before any more surgery. Talk to your surgeon about it, maybe he can refer you to someone?
If you have any teaching (university) hospitals, that's a good place to start. Call, ask for the 'Cheif of Neurology'.
Ask here, tell us what city you're close to, and maybe some one will have a referral for you. Go to
rsdsa.org
they have a doctor finder, by zip code.

Do what you must, but please, get this RSD ruled in or out!, It'll make an incredible difference in your life!

Wish you the Best!

Pete

asb

[smurff]

Originally Posted by AintSoBad

Yes, you should find a doc (a neurologist perhaps) that knows and deals with RSD ASASP!!!
Get it diagnosed, or ruled out Before your surgery.

The anesthesiologist should be aware if you have RSD, there are certain protocols (such as using ketmine) during the surgery, if RSD is present.

You've really got to get moving on the RSD, before any more surgery. Talk to your surgeon about it, maybe he can refer you to someone?
If you have any teaching (university) hospitals, that's a good place to start. Call, ask for the 'Cheif of Neurology'.
Ask here, tell us what city you're close to, and maybe some one will have a referral for you. Go to
rsdsa.org
they have a doctor finder, by zip code.

Do what you must, but please, get this RSD ruled in or out!, It'll make an incredible difference in your life!

Wish you the Best!

Pete

asb

Oh gosh i didn't realise that it was so vital, i will mention it to the surgeon Tuesday and he can point me in the right direction.. thanks for the info ketamine....i have some cream which i was given(but haven't used), what is the danger of using ketamine during surgery, and in what form does the anaesthesitist use this? What are the dangers in having surgery with this condition? thanks very much for your reply!

[AintSoBad]

You're asking all the right questions, smurff.
I'm not a doctor, I've had RSD for about 28 years, and have been around here for a while too. I don't know the dangers or the forms of ketamine. (I've never had it).

The danger of surgery with rsd, is that it can spread. And, it will. Even over time.
Imagine your entire body feeling that way? Mine and many others do. We call it 'Full body'.

So, get your questions answered, and find out if you do indeed have RSD or not.

I have rsd, and neuropathy.
Often for some additional pain control (besides the meds) you may need to 'fool' your nerves. Try putting your feet in some luke cool, or warm water. This will be enough to 'change' what the nerves think they are sensing, thereby deactivating them and reducing the pain. If that's understandable? Are you getting any odd sensations anywhere else besides your legs?

Be Well!!

Pete
asb