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Old 06-09-2002, 09:47 PM   #1
Junior Member
Join Date: May 2002
Location: Harbor Beach, MI USA
Posts: 21
Tin Tin HB User
Ice cold legs?

I have had cervical fusion with plate and screws C5-C6 1-17-01, and Lumbar fusion with pedicle screws and rods L4-S1 7-6-01, I have had two epidural injections and two facet injections (recently). I have more stenosis and a herniation at L3-4. Heres the question.... Has anybody woke up at night with their legs cold and heavy (and not able to move them...briefly)...then they start to burn??? I've had this happen twice now...anybody else have this happen or any thing similar? Scared me half to death!!
Tin Tin

Old 06-09-2002, 10:25 PM   #2
Join Date: May 2001
Location: Cape Cod, Ma
Posts: 50
dayna5 HB User
Re: Ice cold legs?

Hi Tin,

Yup, happened and still happens and scares the crap out of me. The are times when they are ice cold, than burn like a son of a gun. And when they decide not to move, they **** me off...suckers got a mind of their own.

I don't know what it is, but assuming some kind of a nerve thing. I am going to an ortho Friday and will ask him what is going on. I'll let ya know

dayna <IMG SRC="">

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Old 06-09-2002, 10:33 PM   #3
Junior Member
Join Date: May 2002
Location: Harbor Beach, MI USA
Posts: 21
Tin Tin HB User
Re: Ice cold legs?

Thanks for replying...I'm not glad that the same thing happens to you, but thanks for sharing your experiences with me!! It scares the crap out of me too!! The first time it happened I woke up and about screamed...then my heart started racing...I woke my husband up and scared him. Please let me know what your doc says, my next appt. isn't till July 2nd. Also do your feet hurt? Mine are really bad in the morning <IMG SRC="">
God Bless ya with a pain free moment!
Tin Tin

Old 06-10-2002, 06:46 AM   #4
Junior Member
Join Date: Jul 2007
Location: New Zealand
Posts: 15
belle0050 HB User
Re: Ice cold legs?

Oh TinTin and Dayna , <IMG SRC="">
I feel so sorry for you both being so scared , I just had to send this !! I live in New Zealand, across the World from you!! it's almost 1 am in the morning .. I was going to bed but decided I must reply to help you!.. ..
I have had extensive Spinal surgery over 2 years and am now due for a 3rd op next month .. so I do know a bit about what's going on!..

My wonderful Neuro surgeon explained the DEEP FREEZING COLD Legs and then BURNING legs is caused by Nerve Damage in my spine from the operation..It can be caused from the instruments they had to use to hold open the area while operating ..or any other instrument used.. It may go away with time but it seems to be an unwelcome 'by-product' of back operations for some of us..

He prescribed me Tegretol,- ( which will be known in America as another name, possibly Carbamazepin made by Novartis? ) look up a Drug Website and you'll find the relevant name to Tegretol.. It is used for Epilepsy , but is also widely used for pain that other regular meds don't help, and these horrible SENSATIONS!!..I now find it GREAT when desperately needed !!!

What Tegretol does is it 'dampens down the messages in the brain' which I get , telling me I am feeling the cold or hot .. it gives me GREAT relief in bed at night if I need to take it.

I hate taking meds. but as you'll know just how horrible these sensations are, I welcome the meds. when needed !! I only take the Tegretol occasionally, as one dose seems to work for a few days.. I was told to take it everyday, in increasing stages.. but I have devised my own way;. Take them in early evening so they work thru the night .. ..
All I know is it works to block the unbelievable SENSATIONS,- it makes you have a good DEEP sleep (without jumping or spasming in the bed) and 1 pill (200 mgs) doesn't leave me groggy the next day like the increasing dosage used to..
No one knows how awful those sensations are , do they ?!! They're INDESCRIBABLE!!! <IMG SRC=""> Maybe you could ask for some of this drug to help you?..

Anyway , I wish you both luck and hope you find some relief .. wish I could give you both a big hug!! You'll see my story on the 'Spinal Disorders' Topic page if you want to know a little about my situation and 'Rare Disorders' Topics..
I just want to finish with all these ops .. and weird sensations too!!
.. Let's know how you get on if you can??.. Take Care .. Belle NZ. <IMG SRC=""> xxx

A Friend!

Old 06-10-2002, 08:07 AM   #5
Join Date: May 2001
Location: Cape Cod, Ma
Posts: 50
dayna5 HB User
Re: Ice cold legs?

Hey TinTin,

Yes, my feet hurt also. But at the same time they are numb...hmmmmm. Basically they throb. When they are ice cold they are numb, but every once in a while they heat up, so they are hot (like the legs, actually mine travels from my feet to my legs) What really hurts is when I stub my toe or my foot. Cuz i have no feeling in my feet, i can't feel the "couch" so i slam it which feels like I just broke my whole entire foot. I'll take numb anyday, lol.

I heard Neurontin was good for that also. Because I have epilepsy, I have been put on Tegratol years ago. I took myself off of it, cuz I hate the way I was feeling when I took it. (I took almost 2000mg though) I chose to deal with the seizures rather than the meds but I don't have "grand-mal seizures", I have Temporal Lobe epilepsy so it is liveable. Starting to have some "staring seizures" so the choice might be taken out of my hands and I might have to go back to the Tegretal. But than again, I am on Klonopin, for anxiety, but it is also a anti-seizure med so maybe that will do the trick. Cross your fingers.

I definately will let ya know what the doc says Friday. I don't have a lot of faith in him though...he is my "lawyer's doctor" which will help my case cuz he is for my case, but he is a little weird. Met him once and he didn't give me a wonderful impression. He was one of those who had a micro-disectomy and drove himself home from the hospital, was back to work in two weeks. So, I kind of thought the driving home from the hospital was a little wierd, but maybe he only had a vey small problem and lived across the street, lol.

Anyhow, I will talk to you soon, have a great day.

dayna <IMG SRC="">

PS. Isn't it amazing, from accross the world we now have a new friend, Welcome and thanks for the advice!

Old 06-10-2002, 10:42 AM   #6
Junior Member
Join Date: May 2002
Location: sacramento
Posts: 18
looking4relief HB User
Re: Ice cold legs?

What a relief I thought I was losing my mind <IMG SRC="">my husband thought so too hehe.I have been having that cold feeling you were all talking about it is strange to be hot all over than have sweats and blankets wrapped around your legs I also feel that in my feet and have gotten so scared of these episodes that I always have socks with me now.I have not had my surgery yet so all I can think of is maybe there is something compressing a nerve or something but it is a terrible feeling and I usually have a pins and needles feeling then lose feeling in both legs and my feet it is very weird =) I do take neruotin now but only 100 mg doses 3x daily maybe I should ask Doc to bump it up.Does anyone else ever feel shy about sharing stuff with their Doctors? I sometimes think if I bring up one more symptom they will label me NUTS!!! Thanks for sharing your stories guys I will pray for these episodes to end for all of us <IMG SRC="">

Old 06-10-2002, 04:33 PM   #7
Junior Member
Join Date: May 2002
Location: Harbor Beach, MI USA
Posts: 21
Tin Tin HB User
Re: Ice cold legs?

THANKS to everyone who replied...I really thought I was losing it!! I'm sorry though that you all have to deal with the pain, and cold, and hot flashes etc....but it's great to have such a support system, even from halfway around the world!!
I'm sorry to hear that you have to deal with seizures on top of your back problems..I will keep you in my prayers <IMG SRC=""> I have a good friend that developed having seizures after her 4th baby, something about the delivery being tough and she had to push so hard that three months after noah was born she ended up with scar tissue in the frontal lobe area...She almost died during a seizure so they finally took her to the Cleveland clinic in Ohio, she has been seizure free for 19 months (knock on wood!!)
I hope your doctor appt goes well, sometimes don't you wonder what planet their from?? I'm not familiar with your back history, sometime when you have time please fill me in...that is if you don't mind <IMG SRC=""> Well I should go for now. Once again thanks to all who replied!
Tin Tin

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