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Vali
05-04-2010, 09:01 AM
Hi all, I posted this on the aussie forum as well. Here goes. It has been a week now that my walking has been deteriorating. The pain in my hip and pelvic area is really bad. The pain i have now is worse than the day after surgery. It started with aching after my walks but got worse over the week. I had some xrays and CT scans last Thursday. They showed nothing wrong in either the hip or pelvic area and the hardware also looks good. The pain radiates down my left leg (anterior) and stops at the knee. Sitting is ok, but standing and lying down ( first 1/2 hour is unbearable). I am barely able to walk and it is scaring (sp?) the s... out of me. After taking some pain meds and muscle relaxers over the weekend, my GP wanted to see me Monday morning and was really concerned when she saw i couldn't walk. She rang my surgeon and asked for an urgent appt, which i have at 2.30pm tomorrow. The only thing that i remember doing is stumbling on some uneven surface, but i wonder why the delayed reaction or even if it's related? Sorry to ramble. Has anyone experienced this??????? I had four weeks to go until my one year anniversary and i can't believe this is happening. I didn't sleep last night. The emotions were running badly, tears, anger sadness:mad:. Will let you know whats happens at the surgeons office. It's 11.30pm here, i need to have some pain relief and hopefully some sleep. Need a clear head for tomorrow. Thanks for listening and in anticipation of any replies.

jrnyc
05-04-2010, 10:39 AM
oh my gosh, Vali..i am so sorry that this is happening...
will keep you in my prayers that this is something temporary that the surgeon can help you with!

jess

LindaRacine
05-04-2010, 10:46 AM
Hi Vali...

I had some sciatica in the very early part of my recovery, but it went away. I think it's relatively common. Hang in there... this too shall pass. :)

Regards,
Linda

52skeedoo
05-04-2010, 10:55 AM
I'm so sorry to hear about your pain. I hope your surgeon can get to the bottom of it. I'll be looking forward to getting the update after you see him.
Rest as best you can until then.

Sheri

doodie
05-04-2010, 11:29 AM
Vali -
I'm so sorry you're having this pain! It does sound like sciatica.

The good news, so far, is that your hardware looks good and nothing else was detected from your CT scan or x-rays.

I hope your pain is back under control (it's unsettling to say the least! :confused:) and that at your appointment with your surgeon you can discover what's going on....

All the best!

dolores a
05-04-2010, 11:51 AM
Hi Vali, I hope you get some answers to why you are having this pain! I had my surgery just about when you did, I also took a fall at work that scared the heck out of me, and hopefully things inside are still in order. I do get some pain in the top of my left leg in the front, will address it with my surgeon at my next appointment. Sometimes I think these pains come from being straigntened up and stretched out after surgery, everything is still adjusting maybe.

Doodles
05-04-2010, 01:38 PM
Vali--So sorry to hear you are going through this now. You are almost to the one year mark. Hopefully, at this point all is fused OK and it is just something that is very minor and can easily be dealt with. Good luck. Janet

Back-out
05-04-2010, 01:50 PM
That IS scary and I'm so sorry to hear it!

Sometimes we can't measure how serious something is by how much it hurts. Maybe a screw is loose (you know wjat I mean) or something else easy to repair. Or maybe it is "just" sciatica which will resolve, as Linda said.

This surgery is so complex! Sometimes a piece of the puzzle slips a little amd has to be put back in relatively minor surgery or else it's just an adjustment our bodies are making.

Glad you were able to have it looked into so quickly!. Keep us posted!!:)

JenniferG
05-04-2010, 02:21 PM
Oh no Vali, I'm so sorry to read this. I'm glad you don't have long to wait for your appt. I hope he can identify what it is that's causing this pain. It's our worst nightmare, isn't it? But, it could be something minor. I do hope so. Let us know, won't you. Thinking of you today. I have everything crossed for a quick resolution to this problem.

dianeh
05-04-2010, 04:16 PM
I also think you probably have sciatica. I had it first in my right leg and then in my left. The time frame is about the same as well- around the 1st anniversary. It hurt so much I couldn't accelerate the car or walk. I went to PT and took Lyrica and it was a process. Both of my piriformis muscles were
irritated and swollen, pressing on the sciatic nerve, so stretching them and calming down the nerve was the treatment. All of that pain is now gone but it took a year with some good days and some bad. I had to use a wheelchair for
long distances. I was terrified that this would never go away but it did and I am fine. ( The piriformis muscles are small ones in the butt that are next to the sciatic nerve) It is good you are checking with your doctors, though.
This is when I found out that my surgeon had removed all the discs in the fusion- I was not aware he did this until after the surgery, and I'm not sure if all surgeons do this.
dianeh

Back-out
05-04-2010, 09:58 PM
This is when I found out that my surgeon had removed all the discs in the fusion- I was not aware he did this until after the surgery, and I'm not sure if all surgeons do this.
dianeh

Something worth another thread too. I believe sometimes surgeons even remove whole vertebrae as part of the shaping process. :eek:

LindaRacine
05-04-2010, 10:04 PM
something worth another thread too.

lol!

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LindaRacine
05-04-2010, 10:09 PM
This is when I found out that my surgeon had removed all the discs in the fusion- I was not aware he did this until after the surgery, and I'm not sure if all surgeons do this.
dianeh
Hi Diane...

You might want to double check that. It would be very unusual for all the discs to be removed. Generally the only discs removed are those at the apex of a thoracic curve, and lumbar curves. To remove all of the discs in your long fusion, you'd have to have a very long anterior incision. You also would have probably lost several inches in height.

--Linda

titaniumed
05-04-2010, 11:16 PM
Vali

I had a pain episode last November (22 months post), where I had major pain right around my L3 area. After xrays, my surgeon told me that it was a soft tissue injury. I had the pain for 12 days. I think it was from pulling down, clipping my toe nails.

It seems that nerve pain has no moderate setting. It is either on or off, just like a light switch. I also found that hot baths worked well with 10 level pain.

Hopefully it will pass soon.
Ed

Only my lumbar discs were removed....I believe access from the front is required, and in the upper chest area, that becomes extremely difficult if not impossible.

dianeh
05-05-2010, 06:50 AM
Hi Linda,
I actually double and triple checked with Dr. Lonner in an office visit about the disc removal because I was shocked that I was unaware of this (it hasn't bothered me in any way and made it easier to diagnose piriformis syndrome since it wasn't related to a disc problem) but I will definitely recheck.
dianeh

Vali
05-05-2010, 09:38 AM
Hello to all scoli siblings and thankyou for your responses. I visited with Dr Hall today. When i was called, he watched me struggle to walk towards his office. He said he was very surpised to have seen my name on his appt book and wondered what had happened. I told him what had been going on and showed him my scans etc. He sent me off immediately for some updated xrays to check on all the hardware (me xrays of last week, were only of L4/5-L5/S1) top to bottom. He told me to wait for them and come straight back. We both sat there with this new computer xray thing (never seen this before) and scrutinised every bit of the hardware. There was nothing to be seen anywhere, that could explain the pain i was experiencing, nevertheless, why i struggling to walk. I was very tender in the low back to touch. He has now ordered a blood test to check for 'deep infection'. In the meantime, he wants me to try to commence walking slowly a few times a day and to try riding an exercise bike to keep the muscles in that leg moving. He asked me to keep my June 1st appt, but to call him if things deteriorate more. If they dont improve by next appt, he asked me to call him before hand, so that he could have me have a scan or possibly an MRI to double check. Thanks to all again and i will keep you informed.

jrnyc
05-05-2010, 12:10 PM
Hi Vali
i hope you can manage some movement if that is what the surgeon wants...i know it will be painful....

maybe it would be good to have that MRI...if nothing serious shows up, it might reassure you...

i truly sympathize with you...it must be so frustrating....not knowing why this is happening to you!!! please know that people are thinking of you and praying for you...and that this all goes away really soon!

jess

dailypain
05-05-2010, 12:15 PM
Hi:

So sorry but stay calm. You are doing right by seeing your spine doctor right away. Try not to stress too much (I know that is hard in our situation) but stress can also cause muscle spasms I have discovered. Just remember God doesn't give us anything we can't handle.

JenniferG
05-05-2010, 04:25 PM
Morning Vali. You're doing everything right, and you will get on top of this. Upon thinking about it more, it does sound like sciatic pain, which can be horrible. Is it easing at all? Have you tried a cold pack or a hot waterbottle, well wrapped? I hate using cold on soreness, and usually find heat helps more. However, I guess if it's inflammation, coldness might be better. Try both, and see what happens.

You're in my thoughts.

Vali
05-06-2010, 07:24 PM
Morning all, Well, I think i've had everyone and anyone call me or stop by and tell me, how, they told me so. Funny how one family member (MIL) needs my help on the day of my visit to the surgeon, calls my husband to find out if i'm ok (she treats me as if i just came home from hospital everytime she sees me) and next minute my family and friends all know about it. So, i got all the 'you should have kept your housekeeper for longer', ' i told you, you shouldn't have gone back to work so soon', 'i know you have a newborn granddaughter, and things are really busy but shouldn't you be taking it easy?
I have known my body for 45 years. I know what it can and can't tolerate. OK, so i've had a little bit (hope the blood test comes back negative!) of a setback. No problems, i will deal with it, with the help of my surgeon, gp and all you lovely people on this forum. Don't get me wrong, i appreciate their caring attitude from family and friends, but i don't need the 'told you so' at this point in time.

Jen, i will try the cold pack as you suggested. I have always done heat packs as i always thought that cold packs constrict the vessels.

dailypain, I will try not to stress, as those spasm are very painful, however, for some reason they only come on when i'm in bed.

With regards to everyone who mentioned sciatica - excuse my ignorance - but can sciatica be down the front of your thigh? I am only familiar with sciatica down the back and side of legs.

I can't remember, but was there someone on this forum who had the 'deep infection'? Does anyone know who this was? Would like to know what kind of symtoms they had - just for comparison - not for diagnosis.

Sorry about the above venting, just needed to get it out. I will update when i get my results. Have a great day!

jrnyc
05-06-2010, 09:19 PM
Hi Vali
yeah..i have sciatica down my left leg, and now it goes all the way up to my left hip...but i, too, never heard of it down the front of the leg...?

hope you make a come back from this setback and that it all reverses itself with time...and i really hope the blood work comes back negative!

feel better soon!
jess

loves to skate
05-07-2010, 10:21 AM
When the pain is in the front of the leg, it radiates from a nerve root that is higher up than the sciatic nerve. I don't know the exact location, but maybe Linda knows.
Sally

loves to skate
05-07-2010, 10:36 AM
This really piqued my curiosity, so I googled nerve root dermatomes. This link should help. http://www.backpain-guide.com/Chapter_Fig_folders/Ch06_Path_Folder/4Radiculopathy.html
Sally

doodie
05-07-2010, 11:22 AM
Hi Vali

I had pain in my left thigh that for the last year prior to my surgery felt like 'deep bone pain.' It was classified as sciatica and results from an MRI showed stenosis at L3-4 and L4-5.

I used the term 'uncomfortable' quite often to describe my pain. Not to negate what I was feeling, I had had worse pain (passing a gallstone - that was a 10) but for sheer, relentless pain, that lumbar compression pain and sciatica was just so mentally draining. I could never get comfortable in any position, ever.

Hopefully there is no infection and that things settle down in there. I'm happy to see your surgeon is taking your complaints seriously.

Sally - thank you for the link - that diagram is very helpful! I bookmarked the page.

jrnyc
05-07-2010, 03:09 PM
Vali-i hope you are feeling better

Julie-wow...your new back looks amazing!

i was looking up sciatica and related stuff on internet...there is a website by a Dr Antonacci...i dont know anything about him...but the site has some great animations and pix of sciatica and radiculopathy! i had no idea that sciatica could come from so many places on the spine and that it can cause so many different places on body to hurt! so now i understand how sciatica can be back or front of leg...

jess

dianeh
05-11-2010, 06:56 AM
Hi Vali,
I did have a deep infection although I may not be the person you mean. Two
and one half years after my fusion I started to get chills and pain in my right hip area. When I saw my dr. she noticed a slight swelling, warm to the touch,
to the right of the incision. I had not noticed it and it was not painful. She sent me for an X-ray which was normal, blood work which was very abnormal showing some huge infection,and a CT scan showed the abscess which needed to be drained surgically.
This does not mean that you have anything like this. They still don't know what caused it and I have now been off antibiotics for 10 months and things look good. I had the sciatica first and that had resolved when this happened.
Sounds like you have a good, caring doctor.
Good luck, Diane

Vali
05-11-2010, 08:23 AM
Hi all, thanks to everyone again. I got a call from my surgeon this afternoon ( I called his office yesterday, but forgot, he has theatre on Mondays!!), he said that the blood work all came back clear. He feels that i may have aggravated my SI joints as there is very slight swelling and tenderness in that region. He wants me to keep walking slowly on level ground and cycling (stationary bike). I told him that the cycling was not good for me as i did it twice and found it harder to walk when i got off. He suggested that, i should then maybe go to a pool and walk in the water. He prefers me to walk on level ground but if the weather is bad, he would prefer me in a pool. He also said that we could do further investigations, but thinks i should give it more time to settle. I have to keep him informed. He said he was at a complete loss as nothing showed up in the xrays or ct scan, the dics above my fusion even looked good! Right now, my pain has settled a little, however, i am taking it very, very easy this week. I have also cancelled my travel plans. I try not to take pain meds during the day, but take two Panadeine Forte at bedtime. I have noticed that the last two nights i have done this,m i have had no spasms - thank God, because they really hurt! I also use my trusted wheat bag and rub in the Emu Oil. Jen, if you read this, i couldn't do the cold pack - it's a bit cold here in Adelaide! To everyone who posted, with their thoughts and experience, thankyou so much. I will keep you posted on any developments.

JenniferG
05-11-2010, 04:01 PM
Hi Vali, thanks for the update, you've been in my thoughts.

I'm glad to hear the pain is settling a little. I think this is a good sign and your surgeon may be correct in thinking that waiting a little longer is the way to go before further tests.

I don't blame you re the cold packs.

Let us know how you go. Take care and good luck!

Vali
07-06-2010, 10:31 AM
Hi everyone pre and post op. Hope everyone is doing well. Its 12.45am and my final visitor has gone home. Our daughter turned 21 (July 6) and we have had family and friends in and out all night. I have been trying to post since Friday, but when i push 'submit reply' my post gets lost! Anyway, I saw my GP last week in regards to a TVUS i had done in regards to pelvic pain i have been experiencing since this episode began. Most of my pain is gone but i have some discomfort around my ankle indicating it the origins are S1. My scans have shown my left ovary is enlarged, my uterus which is supposed to be 4mm thick is now 10mm, the adenomyosis that the doctor suspected i had (never showed up on scan ) has now shown up on scan and i also have fibroids. My GP said that she feels my Gyn will opt for a hysterectomy and to be prepared. My question to anyone that can help me is........After having scoli surgery, which is a pretty big surgery, did you have to have another big surgery for something else. How did you go recovering from it? To help you a little. I am worried in case the theatre staff dont handle me correctly and i wake up in pain (not due to hyster but due to hardware movement ). Its a little hard to explain but i hope you sort of get the picture. Thanks for any replies.

JenniferG
07-06-2010, 02:57 PM
Sorry to hear this latest news Vali. Can't help with your question but wanted to wish you well and hope you keep us updated as to how you go.

Sounds like you've had a busy time.

jrnyc
07-06-2010, 04:05 PM
hi Vali
so sorry to hear about this problem...i dont know of anyone having major surgery after fusion...but i'd think there has to be at least a few...maybe you could call your surgeon's office and ask them about it...? maybe his office should speak to your gyn's office once a decision about a hysterectomy is made...?

i hope your pain is completely gone soon!

jess