8 replies to this topic

[Laura H]

Hey All,

I am now worried. During PT, I have been stood up with help from PT, my hubby and my son pushing in my knees. I have been noticing that there has been a tightening feeling in my thoracic area T1-T3. I was at first thinking that it was because of all of the PT, the weights, stretching going on. I have just about tapered off my steriods as my doc. put me on a long taper (shots in the hospital then pills two weeks after home). anyhow, tonight I was stood up by my brother and hubby (PT ok'ed this). I warm, and I mean Warm sensation went through my left arm Kind like what what happening before surgery. I am very tight in the thoracic area right now and it is scaring me to death. I am worried the cord is swelling again or something worse going on. I can still do leg kicks from my chair and still have strenght transferring but I am kind of freaking out here.

My Pain doc. is an hour away, my neuro is almost 2 hours away. I otherwise feel ok physically. I don't want to call for "nothing"...geez, how many MRI's could ya go though in a 5 week period anyway..

I don't know if I have a leak and maybe that is the warm sensation or not...

Does anyone out there have any type of knowledge of this?

[pinkcloud]

Laura H, on 07 September 2010 - 12:09 AM, said:

I don't know if I have a leak and maybe that is the warm sensation or not...

Does anyone out there have any type of knowledge of this?

oooooo laura me heart goes out to you yes i do. How much post op are you? I am nearly 6 months. I have had two nasty sensations in that area. Straight after operation at 2 months I had whats called superglue. That is it feels like the sensation you get when trying to seperate two fingers when you have accidently spilt superglue on your fingers on them.

I was sent for mri. it showed my disc was still very close to the cord. They were worried at first then said spinal fluid is flowing from the cord to the brain so its ok. Lyrica helps with that kind of pain.

Then at physio I started doing more and it now feels like two men are sitting on my shoulder and trying to stretch my spine apart.The surgeon thinks this is scar tissue and nerve irritation. And it also feels that screw drivers are stabbing me in the operation area. Lidocaine patches help a little. I am looking at possible botox and steroid injection.

I spoke to neurology nurses who think its failed back surgery syndrome. Have a quick google, see if you think its the same.

I have been neglected by the nhs like you wouldnt beleive. I am seeing a doctor in neuro rehab soon and then maybe sheffield - where I should have been sent at day 1 i am told by a few meds.

I too feel like no surgery has been done. I keep you posted ok. I had specialised discectomy - knew it was risky to get rid of pain because its rare operation done in centre of my spine but it was better than him going thorough the front by the heart I ccan walk and so I am grateful to the surgon for this.Not sure what op you had done?

I would like to add the signs I get when have a full bladder or bowel is AD and also feels that the bottom of my foot is being stabbed. I have tried to goggle it to see if thats normal but nothing there. I aint died of it yet so I just accept it.

See you doctor as we are all different though - but you are definatly not alone in this Laura

Edited by pinkcloud, 07 September 2010 - 09:16 AM.

[Laura H]

thanks pinkcloud. I know the cord is swelling. I can feel it. Called the pain doc, who finally got back to me a day later to refer me back to the NS. Called the NS who did not call me back yesterday. Called again this am and they are paging the FNP to call me. I think I need to be on the steroids for a longer period. When I started tapering off then I started feeling this. can'tdo the serious PT/ OT until I get this cleared.

My surg. was from the back. I had chiari malformation surg., then surg in the thoracic area (3rd time) to get rid of the water hammer keeping the fluid from going down. Also had detethering in the L region due to lack of fluid.

had no issues until got off the steroids...hummm.. I can feel the difference in my trunk and stomach. To beat it all, getting congested due to the weather outside. taking meds for it that dry me out so have to drink more water. Cathing and getting some out but I know those meds dry ya out...
gosh, if it is not one thing then it is another, huh?

[pinkcloud]

Laura H, on 09 September 2010 - 12:50 PM, said:

if it is not one thing then it is another, huh?

aahhhh no laura this is awful news. I hope the right doctor sorts you out soon.... yeap one thing or another - its rubbish.

I am laid out today as I had to climb up and down lots of stairs after a day out with me son - the lifts were broke. Numb legs. Burning in the scar area. Muscle spasms gallore. Who knows hey? Feels like cord compression but could be just nerve trouble making me brain think it is. I just go with its me nerves and rest when I am like this. What will be will be is my thoughts now.... as long as I dont have to go to hospital I will cope. The other option of going aint an option for me

[Laura H]

hey Pinkcloud!

Hoping you are feeling better and having better days. No more of that stupid hot feeling going down my arms when they have stood me up for PT. Haven't done it much because they want the steroids to take effect. My doc. said I just need "the juice" the steroids. so, anyhow, I still feel the tightness in the thoracic region to the point sometimes where I think it going to bust, but when I lay down and rest, gets better..that and the meds. help.

I'm just trying to adjust, ya know...today has been a good day so far and I am hoping the rest will be as well for me too...this stuff isn't easy for anyone..so much to do and it takes 3-4 times as long. I am a type A personality and like to have control over things. Difficult to get used to but am trying my hardest.

I go back to the doc. on the 29th. FNP says he has been presenting my case and MRI's at the conferences he has been attending. he calls me his nightmare but wants me to walk again..I want to as well but am just trying to adjust to where I am at right now. I stress TRYING..heh heh.
Thanks for awnsering back. I know your stressors are different but hey, stressors are stressors and we all have them. It is good to talk about them and give support. Thanks for what you have given me.

[pinkcloud]

[quote name='Laura H' timestamp='1285336525' post='184412']
hey laura

oh i am sooooo glad that you are getting somewhere - them steroids are good stuff and i tell you now - if it wasnt for them i would not have walked. I needed the steroids before the op to try and reduce the cord swelling (something like this anyway) and after - and i felt real strong (i wasnt i was walking like a 95 year old with a zimmer frame but i felt so proud).

You sure are going to get looked after if hes taking your case to what i assume would over here be called multi-disciplinary meetings - thats were all the top boy doctors get there heads together - I reckon they want you walking just as much as you do (well almost).

Keep going - I understand completly the effort you are making and i am right proud of you.

T-spine power (p.s. yeap I am doing real good thank you)

[qbounce]

Hi Laura,
I read your profile page and see that you're no stranger to tethered cords or syrinx's, because that was what I was going to mention to you, based on the "tightening" feeling you are experiencing.

I think you should at the very least have that syrinx reevaluated with another MRI, and be VERY vocal about getting appointments more urgently scheduled so you don't lose any more muscle/ sensation.

You know enough now when something doesn't feel right. And if your body starts spasming more and you feel that hot sensation running down any part of your body again, get on the phone to your doctor ASAP, because it will only get worse until you have something done about it.

[pinkcloud]

[quote name='qbounce' timestamp='1285348827' post='184456']
Hi Laura,

listen to qbounce i say - he sure is wise abouts lots and lots of things

[Laura H]

thanks for the info. qbounce. I will see him on the 29th..have been stood up since that time of the warm sensation and did not have it. I glad you read my profile. No, Don't want to lose what I have because I am getting new muscle movement everyday..that is the crazy part. now I can spread apart my really bad leg when yesterday I couldn't. I can do the foot pedal like nobody's business now..raising the right leg and guiding it to the pillow and kicking both of them...just can't walk.
I know another MRI is in order...fun fun..this time they are going to have to sedate me.
Oh, another subject. My pt used a tens unit on my back today. feels much better..numb but much better. Infact, had a much better day today.

I will tell him about that warm sensation I felt though..worries me that it just happened. happened before surg. too..

anyway, thanks guys..you all are the greatest and very informative.