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View Full Version : 8 Months Post-Op - still not better?



LaurieAnne
08-21-2011, 10:50 PM
I am not a little over 8 months post op and I still have daily pain in my low back, hips, and now even upper back. Is this normal? For those who have had fusions, do you remember how you felt at 8-9 months? Did you have new pains between 6-8 months? I am getting more discouraged as I thought things were supposed to improve not go the other direction. My next appt with surgeon isn't until Nov 16th. My PT basically just referred me to a massage therapist but even that's been increasing my discomfort for several days after the treatment. Any input, thoughts or advice are MUCH appreciated. I wish my back felt as good as my scar looks! I'm really hoping and praying that I don't just have to 'live with it'.

Singer
08-22-2011, 08:02 AM
I still felt fragile and in pain at one year post-op, and had dramatic improvement between 18 months and two years. I continued to improve between years 2 and 3 also. From what I've observed and experienced, lumbar fusions are a bit more difficult to recover from. Increasing activities, nerve regeneration and using new muscles all caused ongoing aches and pains for a long time for me.

That being said, I would be concerned about steadily worsening pain at this point.

Hope you feel better soon.

titaniumed
08-22-2011, 09:26 AM
Laurie

I was about 60-70% along at 8 months and was still healing. I started my PT at 9 months and I thought that the rotating arm bike was great for the paraspinal’s in the thoracic.

If you look at my Redwood Park thread, I was about 10 months and was hiking about 2-3 miles at that point. In my picture in that thread, you can see the fatigue in my face....I was pushing through the pain which is something we have to do.

Yes, new pains come as nerves and soft tissues heal. They sure do take a long time, a few years actually. I laid pretty low till I was 8 months along and then started to step up the hikes and walks. What other choice do we have? Unless you have pains that are “alarming” then just hold your head up, keep going, and keep your eye on the prize, because it does get better.

Any new motions or stretches need do be done slowly.....discovering that soft tissue that has not been worked can be a surprise, even 2 years out. I believe that I have hit them all now at 3 1/2 yrs post.

Hang in there
Ed

peachrush7
08-22-2011, 05:29 PM
Hey LaurieAnne!

I've had a very smooth recovery, and over-all feel wonderful, even better than I did pre-op at 7 1/2 months post-op. But I still have plenty of days where I'm just plain exhausted, my nerve pain in my leg hurts more than other days, and feel achy all over. I can tell when I've over done something, like cooking (getting things in and out of the oven, or lugging laundry up and down the stairs), because I get that deep achy pain in my lower back.

I still get itchy spots all over my back. It'll just flare up and then go away within a few hours. I also get occasional shooting pains for seemingly no reason at all. Nothing that has scared me yet, but they do hurt. I have to remind myself that my body has a WAYS to go still, and that my nerves are still healing. Nerves are the slowest healing parts of our bodies, so it's no wonder that at 7 months, I'm getting more "fireworks" than I did at 3 months.

I have been seeing a massage therapist who deals with many scoli patients every other week since about 3 months post-op. Maybe your therapist needs to be more gentle? She barely puts any pressure on my back at all, but I still leave feeling sooo much looser. She does it deeper on my shoulders and legs, but my actual back she is VERY careful about. I also do my PT 3 times a week, and I feel better when I have been active...though, if I'm having a bad day I don't push through it always. Sometimes I think I just need to rest when my body says rest lol. When I don't have the energy for the exercises, I just take a walk.

I hope you start feeling better soon!

leannebr
08-23-2011, 10:42 AM
I am 9 1/1 months post op and I have terrible stinging pain where the crosslinks and screws are. I also have night sweats and sweats with certain movements during the day. I turn a certain way, or move a little one way, feel the stinging and burn up and get drenched in sweat. It sounds like nerves are usually the cause of most pain. I actually felt good/ better way back at 1 month post op. Probably because the nerves were still asleep.

Karen Ocker
08-23-2011, 03:46 PM
It was a good 18 months before I stopped needing some tylenol or aleve. You had a massive correction. The body needs to get used to being uncoiled.

debbei
08-23-2011, 04:57 PM
It was a good 18 months before I stopped needing some tylenol or aleve. You had a massive correction. The body needs to get used to being uncoiled.

I think Karen's got a good point here--you were straightened significantly! Your whole body, bones, muscles, everything--have go get used to their new 'position' in life. I had problems with my hips for a few months too. It felt like the hip didn't fit into the socket right, which was something that I didn't have prior to surgery. I still have spasms periodically (knock on wood, not too often) in my upper back.

Also, someone told me once that the move severe the correction (you are corrected to 10 degrees each?) that the longer the recovery will be.

I'd check with your doctor, but also be patient with yourself.

editing to add: I felt a mess or a while. Spasms all over my back, right shoulder frozen, left hip didn't fit right. I thought it would never get better. It did, and hopefully you will too.

lray
08-23-2011, 05:31 PM
LaurieAnne,

Just to add my 2 cents here. I agree with all the comments on this thread. I am at almost 11 months postop and still have daily aches and pains and phantom itching. Some days I'm exhausted from feeling so sore but the next day I will feel pretty good. Maybe the massage therapist can let up a little or try a different therapist? I hope you have some relief soon.

backissues
08-23-2011, 05:44 PM
I'm at 8 1/2 months post-op.

Have you tried acupuncture??

I had intercostal pain referring from T8 and T9 into my upper abdomen. Nothing helped except the acupuncture. I had shots and took pills. Now, I might get a little upper abdomen pain if I do too much but the frequency is minimal and the intensity very diminished. There was a time that I had to lay down to get rid of the pain because it put pressure on the nerve in my back.

For the past month, I have done water therapy in warm pools (one is 88 degrees and one is 92 degrees). I think that has helped as well.

For those of you who have followed my progress, my headaches from my occipital nerve seem to come from my posture when sitting at my desktop computer. When I was on vacation or away from the house overnight, I didn't get the headaches. On the other hand, the acupuncture and water therapy have been targeted to get rid of this as well. I'm trying to make my desktop area more ergonomic. I thought it was.

Good luck!!

Irene

jeneemohler
08-23-2011, 07:50 PM
My days vary considerably, too. Most days are great, then for no reason that I can think of, I will have a day with spasms or tightness or just plain tenderness in a certain area. I still get a lot of annoying itchiness that no itching will relieve, with the back being numb around the scar. Overall, I get better, but still have days that are worse than the days before. Everyone already said it before me. There is so much going on with muscles and nerves after such major surgery. I like how Karen put it, being uncoiled! I'm sure you will be better as time goes by. That is what almost every fusion patient seems to experience. Two years is just such a long time to be patient!!!

LaurieAnne
08-26-2011, 05:57 PM
I am 9 1/1 months post op and I have terrible stinging pain where the crosslinks and screws are. I also have night sweats and sweats with certain movements during the day. I turn a certain way, or move a little one way, feel the stinging and burn up and get drenched in sweat. It sounds like nerves are usually the cause of most pain. I actually felt good/ better way back at 1 month post op. Probably because the nerves were still asleep.

Hi Leannebr, I know what you mean about having felt better 1-2 months post op. Once I hit 3 months and started bending things got worse and I feel like they have deteriorated a little more since then. I get pretty constant pain in my lower right lumbar/sacrum area though I am not fused to my sacrum - fusion ends at L-4. The area also seems to have a bluehish hue for the last month or so that wasn't there before. I am also having a lot of pain and tenderness in the very center of my spine as well as upper spine (gee that's basically the whole thing). I have tried just about everything - physical therapy, massage therapy, walking a lot, not walking, water exercise, no water exercise, ice, heat, tylenol (no nsaids yet per my surgeon)...I just don't know what else to do. I may check into the accupuncture. Back bothers me from the time I get up in the morning until I can go back home to bed. I'm feeling like I don't have a life anymore...just overwhelming. I put a call into Dr Wednesday this week but didn't hear back yet. Hopefully Monday...I know they are busy. I just REALLY hope it is just muscles or something simple. I don't go back til November but at this rate it seems like that's an eternity. I just so much want to get back to doing the things I love and be without pain. Thanks for everyone's feedback. I will keep ya posted.

jrnyc
08-26-2011, 06:51 PM
i am so very sorry that you are in pain, Laurie...
your back looks so good in the photos...isn't it amazing how someone can look good and
feel so awful...?! i used to get comments that i looked good when i was sick with Lyme
disease...it rarely showed on the outside how bad i felt on the inside...so i know you must
be hurting....
it is stories like yours that have me stopped in my tracks with planning my own surgery...
it just doesn't make sense why some do so well with this scoli surgery and some don't...

i hope you find an answer soon...
i am so sorry you are in pain...
has your surgeon suggested a pain management doctor....
would you try injections if they might help with the pain?
pain doctors can do a lot more than just give out oral medication....
sometimes there are shots that can help relieve pain, especially pain related to nerves....

jess

mabeckoff
08-26-2011, 07:10 PM
I hate to say it but you sound a lot like me last year. I would call your surgeon and see if you can get in any earlier to see him. Something does not sound right

Melissa

LaurieAnne
08-26-2011, 08:01 PM
I hate to say it but you sound a lot like me last year. I would call your surgeon and see if you can get in any earlier to see him. Something does not sound right

Melissa

Hi Melissa,

What happened to you last year? Were you having the same symptoms? What did they do to 'fix' it?

Laurie

Shari
08-27-2011, 11:06 PM
I'm chiming in also. Having had a rough recovery myself. I found it much easier to express the good points, I didn't want to be responsible for someone not having the corrective surgery. In hindsight that was a mistake!!! Karen has a great point, and to add to that,how many years did it take for your curvatures to reach those degrees??? Now, do you now know just how strong you really are? Sometimes our battles take a little longer than we would like, but victory is sweet. This may sound strange, but, the 5 years seemed like forever at the time, and now they sometimes seem like a blip on the screen.

Winter still sucks,
Shari:cool:

LaurieAnne
08-29-2011, 05:33 PM
I just wanted to give you an update. I went to see my gp (general practitioner) today for separate issue and over the wknd I've developed chills and muscle spasms in my arms and legs. She asked about urinary issues and whether I go to the bathroom a lot...weird that she even inquired...so she ran a urine test and turns out I have a urniary tract infection. The fear with this is it can travel quickly to spinal fusion which it REALLY feels like it has. My back pain has worsened everyday for the last several weeks and feels like a balloon is blown up inside pressing on each side of my spine. It's so painful to be sitting and worse standing. I have a had constant headaches as well for last two weeks. Surgeons office finally called back today at 3pm after several days of phone tag. I told her the story and she just said to take the antibiotics and call them back in 5 days when antibiotics are finished. So if it's not doing better by Thursday I'm calling or going to ER bc I'm done messing with this. It's so frustrating when they don't take you seriously. I just wish people would listen. Sorry for the vent I am just so overwhelmed right now. Thank you all SO MUCH for you replies. This forum really is a God-send!

Singer
08-29-2011, 06:28 PM
Most of these surgeons seem to be terrible at follow-up problems that aren't directly related to the fusion...they're so extremely specialized. I hope the antibiotics make a difference but you're right to go to the ER if you're not feeling better in a couple of days. Good luck!!!

titaniumed
08-29-2011, 08:17 PM
Laurie Ann
I have had kidney stones and gall ileus. Any urinary tract infections seem to transfer incredible amounts of pain to the back.

They gave me Azithromicin, and the next day I was 95% better. Of course, this is a 5 day program and needs to be taken all the way through.

You should be doing a whole lot better tomorrow.
Ed

peachrush7
08-29-2011, 08:41 PM
poor thing!!! I really hope the antibiotics start making a huge difference quickly! I sure hope a few scoli kids who are having the surgery now grow up to be scoli surgeons. THEN they'd realize how it feels to worry about everything that happens post-op. I don't think they get it, because they've never been in our shoes.

Keep us posted!

LaurieAnne
08-30-2011, 05:39 PM
Well after 3 doses of antibiotic the burning sensation is finally dwindling in my upper back and neck. Everthing still feels very tight and the headache has yet to go. Also still having involuntary muscle twitches or spasms but hopefully these subside soon. My lower abdomen has started hurting today. Anyone else been diagnosed with kidney infection or uti that had this happen after getting on antibiotics?

golfnut
08-31-2011, 03:37 PM
Laurie Anne,
Are you feeling better today?

LaurieAnne
09-01-2011, 11:16 AM
Hi Karen,

Well yesterday was a fiasco but finally got everything checked. Thankfully there was no remnance of a spinal infection though they do think it was heading in that direction based on the burning in the upper back and neck. The intense pain in my upper back subsided Tuesday after 2 antibiotic doses but I was still having a lot of mid and lower back pain so Kelly said to get it checked to be sure the antibiotic was working. Other than feeling completely exhausted, having a few spasms, and some residual pain I am doing better. I do have to remain on the antibiotics for a bit to make sure the infection doesn't come back. I'm just sooooo relieved it didn't turn into something severe. I really believe there was divine intervention that I just happened to have a follow-up appointment with my general practitioner on Monday and she decided to do a urinalysis which showed infection. Anywyay, thanks for all the kind thoughts, word, and prayers.

golfnut
09-01-2011, 12:45 PM
Laurie Anne,
Yes, you can be thankful that the infection was detected before moving to your spine. I am glad things are getting better!

Doodles
09-01-2011, 01:16 PM
Laurie Anne--
I'm so glad this is getting cleared up & things are looking better. So sorry you had to go through all of this. Here's hoping and praying there is some smooth sailing ahead. Janet

JenniferG
09-01-2011, 03:43 PM
What a near-miss. So glad it didn't get any further. Take care and hope you are feeling much better very soon.

Mojo's Mom
09-12-2011, 09:31 PM
Okay, can someone please explain how a UTI can spread to the spinal fusion? I can't understand that, unless we're talking about a UTI that has spread to the kidneys and gotten so bad that it's gone septic. If someone can explain it for me, I'd be grateful. Just one more thing to worry about post-surgery. Yikes.

Marina63
09-14-2011, 12:59 PM
I still felt fragile and in pain at one year post-op, and had dramatic improvement between 18 months and two years. I continued to improve between years 2 and 3 also. From what I've observed and experienced, lumbar fusions are a bit more difficult to recover from. Increasing activities, nerve regeneration and using new muscles all caused ongoing aches and pains for a long time for me.

That being said, I would be concerned about steadily worsening pain at this point.

Hope you feel better soon.

Can you tell me what nerve regeneration felt like to you? I have a stinging/burning sensation along my spine. Anything help to ease it for you?