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Old 03-15-2005, 10:27 AM   #1
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StMishl HB User
If not now, when...

Ok. here goes...
I am 13 weeks post fusion (L4-L5 TLIF w/BMP on 12/13/04). I do not feel like I am healing well, backed up by the fact dr keeps postponing my starting PT (anyone else not start ANY PT at 3+ months??), and has told me I have had NO signs "yet" of ANY fusing, and I have a "lose screw" -(he says it looks like it has possibly moved a "bit" - what does this mean??). However he never seems terribly concerned, just keeps up the "see me in 2 weeks with a new x-ray" and to keep taking the pain meds ....

I am FRUSTRATED to say the least. The list of what I cannot do is long. I do not expect to be 100% healed, but is "better" asking too much? Also, "new" symptoms keep popping up - I keep having things go numb (or worse pins/needles-like) such as my legs (one at a time, but both r and left have done it and happens at least 1x day-hip to toes).

My BACK HURTS (well, duh! ) especially across the hip area. I can't really say its no better then pre-op, but different - and equally painful.

My previous posts explain the history - but here are my questions:

1. How should I feel at 13 weeks? This bad?? I keep trying to Tough it out - I am working PT, try to act human, go out w/ my hubby, be a mom, etc... but I feel like poop!! If I am even 30 minutes late with my meds I want to lie down and cry. I sleep too much, (usually in my recliner because my bed makes me hurt worse), and nothing is normal! This is not improving. I am in the corsett brace thing still, and can't imagine NOT wearing it- It hurts when it is loose!

2. At what point do I ask for the next step? What is the next step? How long do I keep up with this "be patient" crap? When do we look to see what is going on in there and why I am not healing? Am I just being over-eager?

3. I take 20 mg oxycontin at 6 am 6pm and 10 mg at 12:00 noon. I am afraid of that this is starting to not work as well as it did at first (it used to work great, now i'm feeling pain through it - could be i'm doing more or i'm getting used to it??). I'd rather try something else I think, any suggestions? I like the long-term meds- avoiding the ups and downs. I am allergic to adhesive (it burns off my skin) and demerol.

Thank you.
By the way I am 33, have osteoporosis and RA also, and thought I had a reasonable pain threashold prior to this mess...
-Michelle
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StMishl Failed Bk Fusion, facet joint/hip issues & RA -Wish I could Jump like him!

Last edited by StMishl; 03-15-2005 at 11:15 AM.

 
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Old 03-15-2005, 10:46 AM   #2
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SadieNY HB User
Re: If not now, when...

I am not sure what it all means as far as if there is a problem. I can tell you what I was told after my Op Fusing is like little strands of fine hair they layer in a short of way even a litte bit of movement can at times break them.. It takes time for the fusing to happen Like I said fine hair. It takes time to recover from this sort of an op muscles become weak and such they forget to tell us we will have other issues such as that when we go in for the Surgery. If I was told I had ahardware issue not tight or had moved I would be yelling fix it but see he may also be trying to give you time to heal and see if it is ok. My main thing is remember that fusing is months not fully to be fused for up to a year is what I was told.

I would however make him tell you what is going on and tell him you are worried and such .

Last edited by SadieNY; 03-15-2005 at 10:51 AM.

 
Old 03-15-2005, 11:29 AM   #3
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Quietcook HB UserQuietcook HB User
Re: If not now, when...

xxxxxxxxxxxx

Last edited by Quietcook; 07-16-2005 at 05:43 PM.

 
Old 03-15-2005, 11:49 AM   #4
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misery HB User
Re: If not now, when...

Stmishal,I'm so sorry you are going thru all this.I just wanted you to know that I agree with Quiet 100%.I could have written your letter myself there are so many think=gs the same.So believe me I feel for you.After 16 months post op I finally went to see a new doc yesterday.I think I waited to long.Talk to your doc,and get another opinion for your owne peice of mind.I wish you all the best.Heather

 
Old 03-15-2005, 11:51 AM   #5
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texasmary HB User
Re: If not now, when...

Michelle, So sorry you are not feeling well. I had a slow healing process also, but mine was from the bone graft hip incision not healing... wore a bandage for 3+ months. I was not given the prescription for PT until 4 months because the doc was waiting to see if the bone graft was taking. My surgery was different than yours... laminectomy and laminotomy with rods/screws at L4/S1. I have been doing therapy for 3 weeks now, most of it water therapy at the PT clinic and floor exercises at home. I absolutely love the water therapy... not only am I feeling stronger each time, but it has lifted my spirits to feel like I am making progress.

Now to the down side. Like you I developed new pain in new places. Because of the rods/screws, evidently more pressure is now being placed on my SI joints. I am having a lot of trouble sitting, whereas I used to be able to sit for hours. I am also having muscle-spasm-type pain in my mid to lower back when I stand too long. I have to keep moving all the time... don't sit too long, don't stand too long, don't lie in one place too long... just keep moving. The other down side for me has been that I have been battling flu/bronchitis and then I had bad reaction to some antibiotics... feet swelled up and felt like they had been scalded... I couldn't put shoes on or walk for a couple of days. I am now on a prednisone type medication for the week to control all of this reaction. Seems like every time I try to fix one thing that I break something else... sure hope the steroid doesn't cause a new problem.

I know I didn't answer a lot of your questions, but yes, there are those of us who didn't start PT until later than others. So hang in there. I'll be thinking of you.

Mary in Texas

 
Old 03-15-2005, 12:40 PM   #6
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myspine HB User
Re: If not now, when...

Hi Michelle
Well let's see 13 weeks is 3months plus a week or so?? Michelle, You know we all just play doctor on here but....I think you have every reason to be concerned. i do not know what you fell comfy with, but maybe next time you say that YOU are very concerned and think this needs some further exploration, or maybe see a different doc for an opinion. i would think you should have some sign of fusing going on here by now. Have you had a MRI or CT? When I started having increased pain at 3 months that was immediately ordered, I do not know if you remember but then MY doc was worried there may have been a shift or a crack around a screw and did exploratory surgery.
Please try to get another opinion if your gut instinct is telling you that something is just not right.
Remeber you are the only one that can take charge of your body, and believe me I know it can be intimidating when your in the office and they say their thing, but this is your spine for forever. Keep us posted and you are in my Prayers
See ya
shelley

 
Old 03-15-2005, 05:27 PM   #7
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StMishl HB User
Re: If not now, when...

Wow, you guys are great.

First to clarify a few things:

1. I did have the BMP with the bone mixture from my hip. I also am wearing a bone stimulator (woke up w/ it in the hospital) and have 24/7 ever since. As I have osteoporosis (Hysterectomy @ 27, lots of prednisone history, etc...) they were a bit concerned about bone re-growth, so I do have the bone stim.

2. I have never smoked. However, I do drink diet coke. I know that is debatable as far as a no-no. My doctor never said anything about this (and I even had diet coke in the hospital!!) I will admit I am adicted... I have one each day before I am even dressed. On a scale of 1-10 is this a big deal? If this is a reason I am not fusing, I'll stop... but if its a wives tale-I'd rather not (This is one of my few vices)

3. My doctor is a "orthopedic surgeon/spine specialist/DO". He was the nearest to me on the insurance list when I first realized my "backache" was not getting better. He's not on any TOP DOCTOR lists, but I didn't ever get any bad vibe or anything. I had an orthopedic dr who helped when I broke my wrists and ankles in the past - but he doesn't "do backs" - and the person they recomended didn't take my insurance and had a VERY long wait list. Obviously I didn't make a smart (or very informed) choice... How do you make a better second choice??

4. Physical Therapy... In the hospital I walked (obviously) and did baby-step PT, and the first 2 weeks home had a home health nurse that had me do leg stretches etc... But the assumption was I'd go to PT at approx 4 weeks... I feel like he's scared to send me for fear that something (the lose screw??) will get worse, but I would LOVE to be able to try water therapy, etc... Why else wouldn't I have begun yet??

5. Pain meds, I tried the patches, however the adhesive is like putting an iron on my skin and within about 10 minutes I have a raised welt... obviously my body doesn't like them at all. I do think I need something else though. Maybe a different long acting med would work better. I just want to avoid what seems to be developing into a pattern of more meds - same result.

Is there a diagnostic test to see if the hardware is pressing on a nerve to cause the pins/needles feelings?, to see if a screw really is lose?, If another level has developed a problem or if the fusion is doing anything right (besides another x-ray)? Can MRIs be done after fusion? I thought you couldn't have an MRI with metal in your body?? I know I need to go in to my next appt (Monday) prepared to ask for more then another month's perscription and a "we'll see"... But what is it I need to ask for??

Thank you all so much.

Michelle
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StMishl Failed Bk Fusion, facet joint/hip issues & RA -Wish I could Jump like him!

Last edited by StMishl; 03-15-2005 at 05:31 PM.

 
Old 03-15-2005, 09:56 PM   #8
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Quietcook HB UserQuietcook HB User
Re: If not now, when...

xxxxxxxxxxxxxx

Last edited by Quietcook; 07-16-2005 at 05:45 PM.

 
Old 03-16-2005, 02:07 AM   #9
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Bionicwan HB User
Re: If not now, when...

Dear Michelle,

My heart goes out to you and ALL you've been through.

I had the exact same surgery in Sept '03.

I read your post yesterday and have been trying since then to remember events the 1st weeks after my surgery to compare to yours.

I was back at work by 13 weeks albeit part time status @ 4hrs per day.

In hindsight I went back tooooo soon for I personally was not ready - I was no where near as ready as I thought.

At the same time my surgeon said, "I was fusing" ~ obviously I wasn't for I am NOT fused now.

I was not in PT by 13wks that came a month or so later - my surgeon didn't believe in braces and said, I would get pt by my activities during the day, [I HAVE SINCE FIRED THIS IDIOT]

It's good that your surgeon is following you close i.e. 2wk intervals between appt's. But, I can totally understand your concerns.

AND YOU SHOULD BE CONCERNED. Quiet Cook offered you excellent advice - ask your Dr (or demand) a NEW MRI & or CT scan - you have the right to direct how your evaluated and treated.

Not trying to scare you but I really think you need further tests - I honestly do not think you should have this level of pain especially while your still on the degree of meds you are!

I was off oxy way sooner than this and by the time I was 13wks EVEN WITH A FAILED FUSION I was only on Lortab and Soma as needed.


Sadie's post is an awesome depiction of "A Fusion" in progress ~ fusion recovery is a long process and different for each person.

Try to think positive and don't let fear take over -
be concerned yes, SEEK ANSWER'S!

As Quiet Cook said, there are procedures now that are quite simple if your problem is merely a "loose screw" ...and perhaps it's sitting on a nerve?
They can do minimumly invasive procedures to correct this if needed.

Sorry I can't offer more help for you...
I am truly sorry for all your going through.
We are all here for you to hear ANY progress you enjoy....
or to listen if your afraid or just want to vent

Bionic Witch

Last edited by Bionicwan; 03-16-2005 at 02:13 AM.

 
Old 03-16-2005, 04:49 AM   #10
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flyonthewall HB User
Re: If not now, when...

My surgeon is an OSS and a DO so that wasn't a bad choice. If you're looking for a second opinion check out spine.org. What are you taking for the osteoporosis? I've read that Fosamax builds bone that is not condusive to fusion, and my OSS told me to stay off it at least for now. A neuro had told me that my bones, with advanced osteopenia, were too soft for instrumentation---the OSS fused me from L3-S1. Osteo could be why you have a loose screw. Soda is bad. I've heard that black tea is good for bones. Also, I go to the therapy pool at the local Y a couple of times a week. It's 4 feet deep with warm water. Would it be possible for you to go to a pool and just walk in the water?
fly

 
Old 03-16-2005, 10:52 AM   #11
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StMishl HB User
Re: If not now, when...

Thank you all... You are all saying thing I needed to hear.

I am going to ask about the pool, I took my girls (9/12) to an indoor pool yesterday - Spring Break- and so wanted to get in... It seems like it would feel so good! No heavy swimming, but just being in the water.

My next appt is Monday, so I am going to also ask about testing. I wasn't aware I could have an MRI (was afraid the metal in my back would suck me against the wall )... but I guess its time. I think what I really want to know is if what he fixed is what is wrong (still?) or if there is something new. I had concerns pre-op as he kinda jumped from consevative thearpy to ESI to fusion - maybe that was ok... but he never saw a need for a disco. He said that the MRI showed problems at L4-L5 and any less invasive surgery would likey be temporary and would eventually require fusion anyways (so I agreed to fusion in that I would rather have 1 "final" surgery then little then big). It never dawned on me it wouldn't be FINAL.

However once he got in there he did a lami on L3 because the nerves were trapped so bad (I'm not even fully sure what that means??), in addition to the L4-L5 TLIF fusion.

Additionally, from the start I had pain at the "bra-line" that has been pretty much ignored, as he has decided the issue was in the lower area and to blame the upper pain on muscle pain from "carrying" the problem (huh??). Does this make any sense? The upper pain IS less, but could it be a problem in its own right?

My legs going to sleep is a MAJOR issue - it happens when I sit or lay down... It seems there is a "magic spot" that if I get any pressure on it my legs go numb... this cannot be normal.

The mayo clinic is a good idea- there is one not far from here... do I just call and try to get an appt? How do you start?

Part of the issue too is I feel like a hypochondriac 1/2 the time (I KNOW im not, but ...) My mom acts like I'm milking "this back-thing" and my husband misses having a WIFE (currently he may as well have a huge rock tied around his neck). Tomorrow is our 5 year anniv. and sex is NOT FUN, I can't do anything a "normal" 33 year old can do, I am NOT a nice person much of the time - I'm either asleep, in pain or crabby due to pain!! We have friends who had a party this weekend where they went go cart racing - all I could do is watch. I feel like I am going to be stuck "watching" everything for the rest of my life!!

Ok, this has gotten way to long... sorry.
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StMishl Failed Bk Fusion, facet joint/hip issues & RA -Wish I could Jump like him!

 
Old 03-16-2005, 01:05 PM   #12
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memawhurts HB User
Re: If not now, when...

Michelle,

I am so very sorry for what you are going through. Your story sounds so very much like mine, that I can honestly feel your pain.

I had a laminectomy in 1999, continued to have pain and had a fusion done at L4-S1 in 2001, which helped and I only had minor aches and pains until last year. I fell at work, January of 2004. Had Pt, anti inflammatories, pain meds, MRI (which did not show anything wrong) and finally a discogram. This finally showed that I had a tear, leaking fluid, and my neuro also said I had cracked my previous fusion when I fell.

I am now almost 6 months post op re-vision of fusion, L4-S1, PLIF w/BMP. I have not had any relief from this surgery. I had xrays done at 2 months and my neuro said there were no signs of fusing at that point. Repeated xrays at 4 months. When my dr was looking at the xrays, I asked if I had started fusing yet, and he pulled the xrays down quickly and said yes. I got the impression that he was not impressed with what he saw, but he said nothing. He started my in PT at that point. I have been doing this for almost 2 months now. It has not helped with the pain (actually it has made the pain worse), but it has definitely strengthened my muscles.

He also does not seem to be concerned and keeps telling me to give it time and we will just have to wait and see. I have also had the pain and extreme burning at the bra-line which he has ignored, and am also having new symptoms now. Numbness and tingling with pain in left arm. My Pt has started treating this with traction, exercises, and massage, which is helping with neck and shoulder pain some.

I have the same questions you do about if this is a new problem or if the old one is just not fixed. I also have to agree with you about not being a nice person and just a nuisance (sp?). And I'm tired of watching life from the sidelines. The difference is I don't have RA or osteo (as far as I know, anyway) and I have not been able to go back to work yet, so I feel so bad for you with the extra's.

I have never been a person to take pain meds, but my PT insisted I get on a regular schedule with it. So I have been taking Norco 10's, 1 in the am and 2 in the evening. But the pain was so bad yesterday, last night and today, that I have been taking 2 every 4 hours around the clock, just to be able to survive. I believe I did something yesterday at PT that did not agree with me. I try to be hopeful and believe that this will better with time, but it gets harder everyday.

I'm sorry this turned out to be such a book. I haven't been posting for a while, just reading, because I have been in such a funk that I didn't want to bring everybody else down with me. But when I read your post, it was so similar to mine, I had to respond. Sorry if I have depressed you or anybody else. Honestly didn't mean to.

I hope you feel better soon as well as everyone else.
Memaw

 
Old 03-16-2005, 01:30 PM   #13
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Quietcook HB UserQuietcook HB User
Re: If not now, when...

xxxxxxxxxxxx

Last edited by Quietcook; 07-16-2005 at 05:47 PM.

 
Old 03-16-2005, 08:04 PM   #14
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StMishl HB User
Re: If not now, when...

I did not know that I could just call up the Mayo clinic and ask for help... hmmm WOW, what these boards teach us is amazing. So even without a referal I can just look up the # on the internet and call, explain what has happened/is happening and they will help me? Cool! I will definately give that a try tomorrow. Also on Monday I am going to ask about having a new MRI and/or whatever other test can be done to learn why my legs are falling asleep and why the pain is not getting better (what type of test would this be??). Also maybe for a different LA pain med, as the oxycontin is just not cutting it - he has increased my dose to 20 mg am/20 mg pm and 10 mg at noon, and I love that I don't have the ups and downs I had on the short acting meds, but I am still hovering at a 6-7 pain level just doing my normal daily activities (add anything out of the ordinary -like grocery store, the mall, etc... and I am done for) , and would have expected to be more "under control". At a minimum I really need something for break-through pain. I know its been 3+ months, but that is the issue... At this point I should be better, I shouldn't need an INCREASE in pain meds and I shouldn't be having my legs fall asleep!!

Any other tips/suggestions as to make this conversation be more likely to be successful?

Thanks for all your advice,

Michelle
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StMishl Failed Bk Fusion, facet joint/hip issues & RA -Wish I could Jump like him!

 
Old 03-16-2005, 08:36 PM   #15
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mel1977 HB User
Re: If not now, when...

you know, I wish I could tell you, I really really do. I keep thinking how close we are in age and how close our surgeries were and yet so far apart, but then so close again. That makes no sense. Oh well.
Let's see. On my last visit my dr said all was well. I did not ask about my fusing, I think I was too nervous to inquire. My pain is minimal in my back, just depends. I am taking appx two percocet 10/325 a day (one for back) (two or more if neck gets worse). It is hard for me to seperate neck pain and back pain, but I am def better in the back. I have to be careful when I walk for working out though, that will aggrivate it. I got the clear for low impact aerobics as long as I don't jump around too much, so starting tomorrow I will try that (assuming my NECK is okay). I can't help but want to ask if the RA and Osteo are partly to blame in why you aren't feeling as up to par. I of course can't say what up to par is though, as we heal so differently. I wish I could better help you, I really do. But, all I can offer is a pair of eyes to read your woes if you need them!

 
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