Motor Weakness 10 Days Post-Op?

[Eldon]

My daughter Brittany (13) had a posterior spinal fusion w/instrumentation surgery 10 days ago. She is recovery rapidly in every way except that she has significant motor weakness in her left leg.

Because of this, the hospital sent her home with a walker, which she is still very much dependant on while walking. This is not paralysis, because feels our touch. She can also wiggle her toes, flex her foot, and ultimately move her left leg w/great effort.

Does anyone have any experience with complication? She said yesterday that her leg feels like it is dead. When trying to walk, she gets frustrated with her leg, because it is not reponding like she is used to. Prior to the surgery, she seemed healthy in every way. We only discovered her scoliosis when she hurt her back high jumping during a track meet.

Please share any insight you may have.

[jc3]

hi eldon
glad to hear your daughter is doing well. My daughter had surgery in november and is now 9 months post op and i do remember her complaining of one of her legs feeling like it was asleep and also she had complaints like that with one of her arms in the beginning. I remember i was worried because one of her arms would just dangle a little sometimes and she would say it felt limp. I think it was just from all the muscles in her back being cut and her's never turned out to be anything and it did go away that feeling. If you are worried i would definitely give a call to the dr.
Jennifer

[Alison]

Just thinking out loud......could they perhaps have aggrevated/shoved not quite right one of the nerves in her lower back. And which is now having to wake up, repair itself and--getting back to where it was.

Alison

[Eldon]

I spoke with her surgeon today on the phone, and he suggested it would improve with time. Since her follow up appt. is a week away, I just wanted to hear from someone else who might be familiar with this complication.

Thanks Jennifer and Alison for you feedback. The prospect of nerve damage makes me well...nervous. I am encouraged that both of you suggest she can overcome this.

Eldon

[Theresa]

Eldon, I'm not a young teen, but I had left leg weakness after my surgery. It eventually got better. Sometimes getting into the car or bed, I would lift my leg into the car or bed. From my first surgery I'm now 16 months post-op and only every so often do I still need to help my leg. Just remember complete recovery is almost a year or two.

[Eldon]

Brittany had a checkup the other day with her surgeon. She is now 19 days post-op and still using a walker, but her left leg motor weakness is improving slowly. Her Dr (Dr. Barry) said she is not recieving "positional feedback" from her left leg's nerve system.

Apparently, when her brain tells her left leg to move, it's supposed to recieve constant real-time feedback confirming the position of her leg. The absence of this feedback is quite literally affecting her coordination. This is because she is not sure where her leg is at any given moment, which hampers her ability to send appropriate continued muscle movement commands.

Since my original post, we have also learned that she is 100% numb over a large portion of her left side. Specifically, her front left & left side from her knee cap to her arm pit.

Dr. Barry said the improving stability in her left leg, suggests that her positional feedback is slowly returning. He is optimistic that her sensation will follow.

I would love to hear from anyone else with insight this this complication, as I am still quite concerned about how fast and how much she will ultimately recover. Dr. Barry said the only thing to be done is to give her time to recover.

[phaden]

While certainly not as severe as what you report, my daughter had numbness after her surgery across the right side of her chest and under her arm. She is 15 weeks post-op and has only recently completely recovered the feeling under her arm. Her chest is still slightly numb.

Patricia

[Eldon]

Thanks Patricia. Your daughter's experience gives us more reason to be optimistic for Brittany's recovery. It was interesting to note that your daughter had the same vertebrea fused as my daughter (T3-L1).

_____________________________

Eldon

Scoli Dad from Nevada, USA
Daughter Brittany's surgery 26 July
Posterior Spinal Fusion T3-L1

[Analyzing Anne]

Hey!
Just wanted to tell you that I have had weakness in my RIGHT leg since my surgery. It was on July 14, 2005. During the surgery, the doctor had to abort my surgery before doing any instrumentation but after doing the incision because I lost all movement in my right leg. The doctors and neurologists were all baffled as to who this happened. They think that because of my curves, (mid to high 40s, 2 of them) a blood vessel got kinked and I lost blood supply to my legs (for better details from my mom, see the thread posted by Analyzing Anne on kinked blood vessels). I had to use a walker while I was in the hospital, but now I have a cane, which I don't really even use, I ditch it a lot. I spent a week in the hospital and then was transfered to a Children's Rehabilitation Hospital. I am 15 years old and was healthy before the surgery. I had to regain EVERYTHING in my right leg. An EMG showed that I have no muscle or nerve death, only weakness. I had slight left leg weakness after the surgery as well, but not anything like my right and now my left is fine. I have only JUST been able to begin to pick up my ankle and still can't raise my big toe. I also have a lot of pain in my right shin. I'm curious if this is anything similar to your daughters?????? Does she have pain????? Mine is also somewhat nerve damage because I cannot feel temperature (hot, cold) on my LEFT thigh and pain shoots up my leg when water touches my foot/right leg. Makes getting into a pool an interesting experience!
I also had slight numbness under my right arm and on my chest, but that has gone away now except when I raise my arms over my head when lying down.

-Sarah :)

[Eldon]

Sarah,

I read the thread posted by your mom that you referred me to for details. In that thread, you mentioned that an emergency MRI showed a lesion from T10 - L1. It sounds like there are definite similarities between your's and Brittany's post-operative condition even though they aborted your procedure.

For starters, she also sustained an apparent tear in her spinal cord during surgery. I say this because she had classic CSF leak symptoms during the first week of her recovery. These symptoms were 1) severe headaches whenever her head was elevated (when sitting up, her head hurt 3X worse than her back), and 2) strong nausea for an extended period of time.

Her Dr ordered an MRI to check for a leak on the 5th day post-op. The metal in her back rendered the results inconclusive, but the tear apparently healed itself, because the symptoms went away after day 7.

You asked if she was experiencing pain. Yes, but it is difficult to characterize, because we are still managing it with Lortab. We tried to wean her off of it a few days ago. It seemed like all was going well 12 hours after her last dose. Then, after raising her right arm above her head, it suddenly started burning. She said it felt like her right arm was about to burn off and quickly got hysterical. We gave her an immediate dose of Lortab and her pain was under control 30 minutes later.

We are now giving her a Lortab dose once in the morning and once at night with Motrin in between. She has felt the return of her right arm pain at times, but not as severe. Her back hurts about as much as would be expected post-op. Her left side doesn't hurt, but then again she can't feel anything in much of her left side, including temperature. She does not have the water sensitivity you mentioned on either side.

I'll keep monitoring this forum for a while, and will post any specific improvements in Brittany's condition. Thanks for sharing your experience. I hope you are able to recover soon to a point where surgery can be considered again (with success this time).
_____________________________

Eldon

Scoli Dad from Nevada, USA
Daughter Brittany's surgery 26 July
Posterior Spinal Fusion T3-L1

[jc3]

i was just reading your post and noticed that you said that you are giving your daughter motrin in between pain meds. Our dr. said no motrin or advil for 1 year post op. Just curious.
Jennifer

[Eldon]

Hi Jennifer,

Dr. Barry specifically recommended Advil or Aleve instead of Tylenol because she is already getting acetaminopen in her Lortab. Brittany much prefers chewables, so I purchased Motrin chewables since they share the same active ingredient (Ibuprofen).

If not for the nerve complications, she would probably be off pain relievers all together by now. The reality, however, is that she will probably be using Motrin for some time. Do I need to be concerned about Motrin?

Eldon

[jc3]

hi eldon
My dr. said no to anything with ibuprofen for at least a year because they feel it isn't good for the healing of the fusion. So i was just curious when i read your post about her taking it. I'm sure every dr. is different and if your dr. said for her to take it then he obviously feels it's safe.
Glad to hear she is doing better.
Jennifer

[Analyzing Anne]

Eldon,

This is Anne. Sarah's mom - she is away enjoying the comraderie (sp?) of her cross country team at camp. Sarah had very bad headaches in the hospital -ones that never seemed to go away even with pain meds. She experienced much dizziness and definitely lots of nausea. She did not eat for days as nothing would stay down. She even experienced this when she was at the rehab hospital.

How is her walking coming? Is she going to physical therapy? Sarah goes twice a week but was prescribed for 3x but we lack more visits per the insurance. We are working on an appeal and her therapists are OK with 2x per week.

Thanks for sharing.

Anne

[Eldon]

Hi Anne,

Her walking continues to improve slowly. Today she has been getting around the house w/o her walker, tenatively and cautiously with a definite limp. Last Friday she had an appt. w/ her surgeon. I specifically asked him if we should take her to a neurologist, and if she should be recieving PT. He said no on both counts. He said a neurologist would just do a bunch of tests to create a baseline of her current nerve functionality, and then wait to see how she progresses. He said PT would not help her specific nerve problem any more than not having PT.

Do you think Sarah's right leg weakness has improved faster due to continued PT? If so, I will check into it with my insurance company. Also, was she assessed by a neurologist after the aborted operation? If so, I'm curious to learn what they thought about this from a recovery stand point.

It's good to hear from you Anne. My wife Paula and I feel like the vast majority of our family and friends can't really understand how emotionally exhausting these post-op complications have been for Brittany and us. It must be even more so for you and Sarah, because you didn't even get the benefit of an otherwise successful surgery to offset these nerve complications. I thank you (and others in this forum) for sharing your experiences.

Eldon

[Analyzing Anne]

Eldon,

To address the concrete first - Sarah has seen teams of neurologists. They were on her case as soon as everything happened. When they got us from the waiting room and took us to a secluded room to tell us what happened -first, the ortho surgeon talked with us then soon after a neurologist. She has been evaluated by four other neurologists since, including the one that did the electronic monitoring during the surgery.

They have been invaluable and our surgeon has relied on their expertise in dealing with the motor and sensation issues. He also won't do these surgeries without this team approach. When we next see the ortho we also see the neuro. Sarah's official diagnosis now always reads - idiopathic scoliosis and spinal chord injury. The neurologists were the ones in charge of her recovery - the first to recommend and decide that she go to the rehab hospital. Ortho and neuro together but each had there more specific concerns and sometimes we would get two stories (nothing major) but it would always get worked out quickly. I cannot imagine going through this without the neuros. They have provided us with hope, cautious optimism, realism whatever is needed and are the ones telling us what to expect from a recovery standpoint. Sarah has had an EMG which noted her muscle weaknesses and in layman's terms that no nerve or muscle death had occurred. All this factors prominently into her PT. Her PT and OT allowed us to bring her home. I would not have been comfortable bringing her home 7 days post-op. We could not have gotten to the bathroom, etc. Whether her recovery is faster with PT I am not sure but I know she had to learn to walk again and I cannot imagine her recovery without it. PT's know what to do to strengthen, to figure out what muscles can perform what. What areas need more intense work. I could go on and on. Then there is the electrical stimulation to get the nerves firing again, the kinesio tape. I think you get my picture.

You are right - it is so consuming emotionally, physically, and spiritually when these complications occur. I have hardly worked since the surgery (July 14)because of the care necessary - the exercises, the paperwork, appts. etc. even psychologist appts. All of us deal with failed expectations differently and some who are not in our shoes cannot empathize. I was doing OK when we were in the hospital because I did not have our other children and house to take care of. But now it is extremely taxing to just do what has to be done by day's end. To boot our youngest is a special needs child. John, my husband, and I understand what it is to go through this and we are with you. Please take care of yourselves.

Anne

[Eldon]

Over the last week, Brittany has made wonderfully surprising gains relative to her nerve complications.

Her left leg motor weakness is hardly evident anymore. She has completely abandon her walker and is walking more like you might expect at 1 mo. post-op.

She has been completely off of pain killers for 2 days now. This is significant from a nerve stand point, because it was intermittent burning pain in her right arm and chest (from nerves) that was keeping her on the pain meds last week, not her back.

She is still numb over a large portion of her left side, but we are optimistic based on the other progress.

Her secondary curve still needs to straighten out, but as she continues walking around unassisted, we have every reason to believe her compensatory curve will re-compensate to where it needs to be.

Breathing a sigh of relief here in Las Vegas
___________________________________

Eldon

Scoli Dad from Nevada, USA
Daughter Brittany's surgery 26 July
Posterior Spinal Fusion T3-L1

[Analyzing Anne]

Hey,

I'm glad Brittany has been improving. It's good that she's getting around w/o her walker! When I first came home, it was with a quad cane, which I have ditched. Will Brittany be going back to school? I went back on the 24th and I am getting around fine, I have a limp, but it's fine. I have to use the elevator, as well.

Hope everything goes well and that she recovers v. soon!!!! :)

-Sarah ;)

[Joe's Mom]

Eldon,
I see nothing wrong with including a neurologist into your daughter's medical team, after all, she IS showing neuro complications. I am also puzzled as to why PT to provide range of motion work and passive movement/strengthening exercises isn't being done now as well.

I have worked in pediatric rehab as a speech pathologist for 30 years and am still amazed at the progress kids make with help. A wait and see attitude may indeed delay input and help.

The worst I can see happening is that by consulting with a neurologist and PT that if your daughter just gets better in time you may have wasted some visits? But then again if she has neuro weakness as a life event you have addressed that sooner not later.

I am puzzled at your doctor's reluctance to do this especially since there are definite complications that have been lingering longer than anyone wants. Maybe TELL him rather than asking him?

[Eldon]

Sarah,

It's good to hear you were able to start school succesfully on the 24th. The first day of school here is on the 29th (tomorrow). We already had home-bound schooling set up for Brittany the first two weeks, so we are going to use it just to be sure she is ready. My wife Paula is a local school teacher and will be her home-bound teacher.

It sounds like you have an excellent support system spearheaded by your mother. I wish you all the best for your continued recovery, as well as a successful surgery in the future.

Eldon

[Eldon]

Joe's Mom,

I continue to have a lot of confidence in Brittany's surgeon, and believe he is one of the finest in his field, which is why we chose him.

That being said, however, part of me did wonder if his stance of not using post-op Neurologists and in-home PT to evaluate/treat her nerve complication was being influenced by a desire to protect the new 3-D correctional technique he is helping to pioneer.

My wife and I discussed this concern extensively, and since Brittany continued to show progress overcoming the complication, we opted to go with her surgeon's advice.

There is one serious nerve issue remaining, which is 100% numbness over a large part of her left side. I am not against the idea of seeing a neurologist, but I am curious. Are these neurologists able to perform operations to restore sensation? And if so, are we hurting our chances of success by waiting to see how she recovers?

By the way, the local paper published a very comprehensive article on this "new revolutionary 3-D correctional technique" which is available at...

http://www.reviewjournal.com/lvrj_home/2005/Jun-19-Sun-2005/news/26644984.html

Eldon

[Joe's Mom]

Eldon,
I don't know what "restorative" function the Neurologist may have as regards your daughter, however, they may add to the mix skill and expertise in looking at exact areas of numbness, damage (temporary or permanent), outcomes, etc . . . all of the things that neurologists specialize in.

Certainly, if there is associated muscle deterioration/weakness with the areas that are numb (and that seems very likely) then Physical Therapy makes a whole lot of sense and specific monitoring of the areas of numbness/weakness by a specialist in neurons makes a whole lot of sense to me too.

IMHO it never hurts to have lots of expertise for complicated cases. No matter how skilled, famous, innovative your orthopaedist is, he doesn't have all the answers! Maybe a lot of answers, but not all of them! Sometimes three or four of five heads are better than one.

[Eldon]

Hi Everyone,

It's been approx. 1 year since I posted here, so I thought I would provide an update on Brittany's current condition.

As you can see by the preceeding posts, she experienced a spinal chord injury (SCI) during surgery, which complicated and extended her recovery period.

I'm happy to report that Brittany recently overcame several of her more serious challenges. The physical aspect of these symptoms have not disappeared entirely, but have lessened in severity. Just as importantly, she bridged the remaining gap by learning to manage these challenges fairly effectively.

It was a long road to this point, however, and I will summarize it here:

She started her 8th grade year in mid-September of last year (2005), and had fairly good attendance for several months. During this time, her recovery experience was probably fairly typical for post-op spinal fusion surgery with the following managable exceptions related to her SCI:

She was, and still is 100% numb on the left side of her body, from her knee-cap to her underarm. Additionally, she doesn't produce as much natural body oil on parts of her left side. This results in relatively dry skin on her left hand and foot, when compared to the right side.

She also has a diminished ability to regulate her body temerature. Specifically, she doesn't sweat or get goose bumps on the entire left side of her body. In fact, when she gets overheated, the right side of her face blushes red and the left side remains the regular skin color. She had me feel her abdomen the other day after exerting herself. Her right side was warm and sweaty while the left side was cool and clammy.

Earlier this year, however, she took a turn for the worse related to the SCI. One night in mid-February, Her heart started fluttering, her right arm became numb, and her breathing became labored. She also got a severe headache and started panicking. I wasn't present, but my wife (Paula) thought she might be having a heart attack and rushed her down to the local medical center.

By the time they arrived, her symptoms had subsided. They did an EKG, but everything was normal by that time. These episodes continued with varying frequency and intensity, so we lined up doctor appointments with several specialists.

The net-net of the ensuing medical attention resulted in a diagnosis of Dysautonomia. This is a condition where the autonomic nervous system is not functioning normally. It was caused by the SCI she sustained during surgery. We don't know why her symptoms ramped up 7 months after surgery, but we had to deal with them.

Along with the aforementioned episodic symptoms, she began experiencing intense but short lived muscle pains. These pains occured one at a time, but were random in both body location and frequency. We tried a few different medications for this, but ultimately settled on Flexeril. While this helped to control the muscle pains, it brought some bothersome side effects with it.

Brittany missed almost 40 days of school from mid-February until the end of the year. The first two months of her summer didn't go well either. Because of that, Paula and I were quite concerned about how successfully she would start her freshman year at the high school.

Near the end of July, she asked if she could try going off the Flexeril again. We had already tried that twice earlier without success, but agreed to give it another go.

I'm happy to report that she successfully weaned herself from the Flexeril and the side effects disappeared as well. A few weeks later, both her spinal surgeon and family doctor cleared her to play volleyball at the high school. Though they set a few conditions, they both felt the routine exercise would help her overall health. She had to take occasional breaks during the first few weeks of practice, but stayed with it and breaks are rare now.

She is a starter on the team and is doing quite well overall. She has missed 5 days of high school so far in 4 1/2 weeks, but that is a better attendance rate than last spring. In fact, she has a game at 3 PM today, that I am looking forward to attending.

She still experiences occasional heart fluttering, vertigo, and other symptoms, but they are less severe, and she has learned that they will pass after taking a short break. Her physicians have assured us, that the only significant danger to her health is getting overheated, so we are sensitive to that.

Another issue, unrelated to the SCI is her lower secondary spinal curve. After fusing the upper thorasic section (T3-L1), her surgeon expected the lower (compensatory) curve to re-compensate, thereby correcting itself to a degree. This did not happen. It actually started getting worse which prompted him to order a brace for her at the beginning of the summer.

It was quite a blow because although the surgery was necessary, one of the inherent benefits was eliminating the prospect of a long term brace. She now has a night-time brace which will hopefully stop the progression of the lower curve at approx. 22 degrees. She will apparently need to wear it for about a year until her bones harden.

On the whole, Paula and I are very relieved and pleased that she is not only attending high school, but is playing sports as well. This whole experience has revealed (or built) great inner-strength in our daughter, which continues to impress both of us.

I've been asked by some of my friends whether we would choose to have the surgery if we had a chance to do it all over again. My answer is yes, because it was more than just a cosmetic surgery. It was required for future heart and lung health, as the 52 degree thorasic curve was continuing to progress.

We would do it again, but we would probably choose a surgeon that did not try for such a large degree of correction. While the prospect of near total 3-D correction was very appealing, we've since learned that this directly increases the chance of SCI by it's very nature.

For the better part of the first year, I felt like the operation did more harm than good. I've reversed my opinion in the last month or so. Even with the unexpected SCI, the operation was beneficial overall. Of course, I'm not sure what the future holds in terms of setbacks, but Paula and I are optimistic at this time.

This forum was a source of great information and comfort during the hardest parts of Brittany's recovery. We are very appreciative of this forum, and the great people who take the time to share their experience and advice.

Thank You,

Eldon