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Meyer
04-30-2013, 01:40 PM
A brief history...I'm 31 years post-op. My curves were 57 and 37 prior to surgery; after 37 and 32 afterwards. Herrington Rod fused from L4 to C7. It's exactly 2 feet long.

After reading everyone's posts in this forum, I feel very fortunate with my scoliosis. I have had very little issues with it. I see a chiropractor regularly plus I stay active, playing tennis and running.

Lately, though I've been having problems with sciatic nerve pain shooting down my left leg and it goes numb too. I've been working with the chiropractor but things don't seem to be improving a lot. I was wondering if any one else had this problem and what they did to resolve it? What exercises were recommended?

Thanks,
Melissa

loves to skate
04-30-2013, 01:51 PM
Hi Melissa,
Have you been back to see a scoliosis specialist? I went for water therapy when my sciatica was really bad but I can't really say that it helped. An MRI showed that I had stenosis in four places. After cortisone shots and PT that didn't help, I finally found my surgeon who said he could help me. I wouldn't wait too long to be evaluated by an SRS revision Doctor because if you have a pinched nerve root, it would need more than Chiropractic care to solve or even evaluate the problem.
You didn't say how old you are and how old you were when you had your surgery 31 years ago. I wish you luck in finding a solution. Keep us posted.
Sally

Meyer
04-30-2013, 03:32 PM
I have never been to see a scoliosis specialist since I was released from the doctor about 6 years post op. I'm 42 now. I was 11 years old at the time of the surgery.

I didn't know scoliosis specialist exist. I figured I would have to go to an orthopedic specialist. I had my surgery done at Hershey Medical Center, Hershey, PA by Dr. Skinner in 1982.

I mentioned stenosis to my chiropractor and he said I was too young to have that.

How did your doctor help you?

loves to skate
04-30-2013, 09:24 PM
Hi Melissa,
There are several causes of sciatica. Because you have such a long fusion, there is always a possibility of stenosis above or below a fusion. I am not saying that is what you have, but you really should see a Doctor who is an expert on scoliosis to be properly evaluated. Google scoliosis research society, www.srs.com, and you will be able to find a qualified Doctor in your area. At the very least, go to your primary care physician and request an MRI. If the Chiropractor has not been able to help you by now, I would strongly suggest you see a Medical Doctor.
My scoliosis was a result of degenerative disc disease. My Doctor fused me from L2 to S1. I lead a fairly normal life for a 73 years young person. Before my surgery, I could barely walk to my mailbox and back which was about 100 feet away from my front door. My Doctor basically gave me my life back.
I hope you get to the bottom of your problem soon because sciatica can be terribly debilitating.
Sally

leahdragonfly
05-01-2013, 07:55 AM
Hi Melissa,

I agree with the Sally above that you need to see a scoliosis surgeon. Your chiropractor's comments about stenosis are ridiculous and ignorant. At age 40 I had severe stenosis above a short fusion that I had as a teen (for spondylolisthesis, fused from L4-S1). Degeneration and stenosis are definitely possible below your Harrington rod.

The link to the Scoliosis Research Society (www.srs.org) listed above will allow you to search for a scoliosis surgeon in your area. You can also search here for people who have seen any surgeon you may choose to see.

Best of luck,

rohrer01
05-01-2013, 09:30 AM
Welcome to the forum!

After that long of time being active on only two discs, I would say you stand a good chance of having some significant degenerative disc disease. I have it and I'm only two years older than you and I've never been fused. In fact, my lower spine is straight and "healthy". It's normal for the spine to start showing normal wear and tear in our 40's. Those of us with scoliosis and/or fusions have a sped up process because our spines aren't working to their full efficiency. It sounds to me like you've had a very good life to have had your fusion last this long with no problems, especially with how long your fusion is. I agree with everyone else, except for the fact that I would look for a specialist that does revisions, also. They are more experienced at handling cases where hardware is already in place. In the mean time you can have your general practitioner order x-rays and/or an MRI just to see what's going on in there. They may be able to offer you some epidural injections to help you through the pain. I hope all goes well. Keep us updated.

Meyer
06-13-2013, 12:50 PM
UPDATE-
I tried going to a different chiropractor but he didn't help. So I went back to this one and he ordered x-rays.

The x-rays reveal that the disc below my fusion (between L4 and L5) is pretty much gone. I have spurs on L4 and L5 vertebra. Plus I have vacuum phenomenon in the area of the disc. It almost looks like L4 and L5 is naturally trying to fuse together, which is mostly likely pinching on the nerves.

Next step, per the chiropractor is to seek out a neurosurgeon or an orthopedic surgeon. He recommended going back to where I had the original surgery 31 years ago. Hershey Medical Center.

Thanks for all of your responses. I'll keep you posted on my progress.

Also if anyone has experienced this please let me know how you made out with it.

Confusedmom
06-13-2013, 10:18 PM
I'm sorry you're having this problem. If you read the revision section, you will find it's relatively common for people to have problems below their fusions after several years, especially people with Harrington rods. I would suggest finding an orthopedic surgeon who specializes in scoliosis revisions. Are you still in PA? If so, perhaps Dr. Boachie in NYC. Check out this website for a list of Scoliosis Research Society doctors near you and then call their offices to see how many revisions they do. My lay-person guess, just from reading this forum over the years, is that they will extend your fusion further down. Possibly to the sacrum, but at least L5.

Best wishes,
Evelyn

susancook
06-14-2013, 07:50 AM
UPDATE-
I tried going to a different chiropractor but he didn't help. So I went back to this one and he ordered x-rays.

The x-rays reveal that the disc below my fusion (between L4 and L5) is pretty much gone. I have spurs on L4 and L5 vertebra. Plus I have vacuum phenomenon in the area of the disc. It almost looks like L4 and L5 is naturally trying to fuse together, which is mostly likely pinching on the nerves.

Next step, per the chiropractor is to seek out a neurosurgeon or an orthopedic surgeon. He recommended going back to where I had the original surgery 31 years ago. Hershey Medical Center.

Thanks for all of your responses. I'll keep you posted on my progress.

Also if anyone has experienced this please let me know how you made out with it.

Hi there Melissa, Having read your thread, I have some concerns and I hope that these comments/personal experiences help you. First of all, like one of the above comments, I am very concerned about the qualifications of your chiropractor in treating you. I believe that it is poor medical care to treat a patient without understanding the patho-physiological basis of the pain/complaint, in your case sciatic pain w/ radiating leg pain. I believe that xrays should have been done first before care [manipulations, etc. or whatever the chiropractor did.] Sometimes such manipulations could potentially cause great irreparable damage.

I had your same problem, L4/L5 stenosis, spurs and disc degeneration. I had R sciatic pain that radiated down my leg. I did have some corticosteroid inj [x 3] which provided temporary relief, sometimes up to 3 months, but obviously the pain returned. When I sought the care of an SRS physician about surgical repair, she said that the surgery [disc repair and enlargement of the stenotic nerve exit with fusion]"might not relieve the pain". That was of course, very troubling for me as I did not want to go through the extensive surgery only to not have pain relief. The basis of her comment was that sometimes after there is long standing severe nerve damage with DDD and stenosis, the nerve dies [or is somehow damaged] and the surgery does not relieve the pain . My PT said that she also understood that nerve pathways are established w/ the sciatic radiating pain and if they are long standing, that surgery does not relieve the discomfort as the pathways continue to be active after surgery. I wish that I had known that information sooner and I probably would have had surgery sooner. At any rate, I lucked out and although the MRI/CT/xray showed "severe stenosis" and DDD at that level, she was surprised that everything "looked better that I thought that it would be" and although she needed to do an extensive repair at the L4/L5 levels, I do not have any pain now postop.

The above was a long way of saying that I hope that you seek care from an SRS orthopedic physician and probably at least a second opinion from another SRS physician before you decide what to do. I would obviously from the above story, seek that care sooner than later. Find someone that you trust and then proceed as you think best. If you need to travel to get the care that you need, I encourage you to do it. I do not know the SRS resources in your area. Others that live near you on this blog would be able to help you there.

Please keep us posted on what you do and decide. I wish you the best of luck on your journey to better spine health and healing. Please feel free to send me a PM [private message] and we can talk on the phone or email if you have any further questions.

Susan

Meyer
06-14-2013, 09:23 PM
Sorry, Susan, I didn't mean to confuse you. I have been going to this chiropractor for many years. The x-rays he had were old ones so these are new ones we have now.
1495 1496
Between L5 and S1 my disc looks perfectly healthy.

So Susan can you explain what you had done to resolve your issues? I see something in your signature but I don't understand all of the acronyms.

NYC is a bit far for me to travel for treatment. Plus I don't have much family to support me. I only have two teenage boys to help me.

Does anyone have recommendations for a doctor closer to south central PA or even MD?

titaniumed
06-15-2013, 12:12 AM
Hi Melissa

Just wanted to say Hi. You made it a long time.....

Yes, you need a “scoliosis surgeon” who does adult revision surgeries.....Perhaps someone will chime in on this.

I have done Chiro for 26 years now, and yes, this is beyond your Chiro.....(smiley face) Sometimes we have to move on.

Did the sciatica also for 6 years......Glad that’s over with. Whew!

I used hot water soaks for pain......it helped...

Hang in there

Ed

jrnyc
06-15-2013, 12:16 AM
Melissa
if you go to the National Scoliosis Foundation website...which this forum is a part of...and click on Resources, you will find SRS doctors listed...you can look them up BY GEOGRAPHIC AREA...i already did that for PA...there is an entire page of scoli specialists in Pennsylvania...
so one of them should be close enough to you and i am sure you will
find one you feel comfortable with....
i do not think a trip to NYC will really be necessary for you...there are
several top scoli specialists there, but you can find top ones in PA
as well...
i think people have been posting on this thread to try to urge you to
find a scoliosis specialist and make an appointment for a consultation...
to see if revision surgery would be appropriate to help with your spinal
problems...
NOTE..Maryland has one page of scoliosis specialists listed as well..

best of luck in your search....
jess...and Sparky

susancook
06-15-2013, 04:35 PM
Sorry, Susan, I didn't mean to confuse you. I have been going to this chiropractor for many years. The x-rays he had were old ones so these are new ones we have now.
1495 1496
Between L5 and S1 my disc looks perfectly healthy.

So Susan can you explain what you had done to resolve your issues? I see something in your signature but I don't understand all of the acronyms.

NYC is a bit far for me to travel for treatment. Plus I don't have much family to support me. I only have two teenage boys to help me.

Does anyone have recommendations for a doctor closer to south central PA or even MD?

Sure, I will explain it: "Surgery: T3 to S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 in 2 surgeries," My problem was "Adult Degenerative Scoliosis". The scoliosis was caused by discs degenerating asymmetrically so it caused a scoliosis S curve. My surgery was done in 2 days because most people, especially older folks like me [I am 66], have more risk with surgeries longer than 10 hours. So, the first day, I had an ALIF and XLIF which are surgeries from the front and side [2 incisions] to repair the discs from the front and side, that took 5 hours. Then the second day I had a PSF or posterior surgery from the back, for repair of discs and stenosis and then fusion of the entire spine from T3 to sacrum with screws in the sacrum, which took 10 hours. All of the surgeries are detailed on the internet. The ALIF involves a vascular surgeon to move the major blood vessels.

When I first came to this site, I did not understand any of the lingo. Look it up. The SRS resource area has lots of info and refers you to other great sites.

Look up SRS MDs on this site and find some near you. I would suggest going to a university hospital. Get your kids involved.

Good luck!.....and I suggest sooner rather than later,
Susan

Meyer
06-15-2013, 09:13 PM
Thanks everyone such prompt responses. I really appreciate and need it right now. I'm so stressed about all of this and have so many questions. However, I know everyone has different results but you have been great!

jrnyc: thanks for the info about how to locate a surgeon
Ed: I looked at your images, and it looks like everything went well for you. I hope things continue in that direction for you.
Susan: Thanks so much for explaining everything. I hope my surgery (if it comes to that) won't be so intense.

I have several questions:

How long did you remain in the hospital?
How long were you off work for?
Is anyone collecting permanent disability because of their issues?
I'm not sure what to consider looking or reading under since my scoliosis began at 11 years old and am now 42 years. So technically, I don't have adult scoliosis.

I spoke with my mother today about who the local orthopedic surgeon recommended for my initial surgery. I was actually impressed that she remembered (she'll be 86 years old in a month). I knew they provided my parents with a list of locations to choose from, to perform the surgery. She said they told her that Philadelphia had the best surgeons. So I'm looking at some of the surgeons in Philli.

Meyer
07-04-2013, 03:34 PM
I went to Hershey Medical Center to see a Physician's assistance there. (Glenn Miller) He looked at the x-rays> He said that trying shots into the nerves in the area may help ease the symptoms. I asked about that only being temporary and he replied that it could last a lifetime. He is ordering an MRI to see more on the nerves in the area.

He asked me which is worse... the pain and numbness in my legs or the pain in my lower back. I didn't know how to answer that. I felt like I was left to sacrifice one for the other. I suppose I should have asked him if he can treat both. I was left with the impression he was only going to treat one of my symptoms. He also mentioned that it looks like L4 and L5 may naturally fuse together which may be a good thing. Has anyone ever had this happen or heard of this happen? If so, what was the end result?

I'm planning to get a second opinion but I was hoping to get a copy of the MRI to take with me for my second opinion. Do you know if they will give me a copy of the MRI results, when I get them done? I don't want to have them done twice. (i.e. pay twice).

Did anyone else have these shots done? If so, what was your results?

Thanks!

tae_tap
07-04-2013, 03:54 PM
I went to Hershey Medical Center to see a Physician's assistance there. (Glenn Miller) He looked at the x-rays> He said that trying shots into the nerves in the area may help ease the symptoms. I asked about that only being temporary and he replied that it could last a lifetime. He is ordering an MRI to see more on the nerves in the area.

He asked me which is worse... the pain and numbness in my legs or the pain in my lower back. I didn't know how to answer that. I felt like I was left to sacrifice one for the other. I suppose I should have asked him if he can treat both. I was left with the impression he was only going to treat one of my symptoms. He also mentioned that it looks like L4 and L5 may naturally fuse together which may be a good thing. Has anyone ever had this happen or heard of this happen? If so, what was the end result?

I'm planning to get a second opinion but I was hoping to get a copy of the MRI to take with me for my second opinion. Do you know if they will give me a copy of the MRI results, when I get them done? I don't want to have them done twice. (i.e. pay twice).

Did anyone else have these shots done? If so, what was your results?

Thanks!

I am not sure if you can have an MRI after instrumentation was put in, at least that is what I was told. I am having to have a CT scan done instead so I would double check on if the MRI is safe. Also, following up with a scoliosis specialist would be a good thing.
Tamena

leahdragonfly
07-04-2013, 05:55 PM
Hi,

Yes, you can get a copy of your MRI report but I would also ask for the entire exam on disc. You may be charged a modest fee for the records (here in Oregon they can charge $30 but never have actually asked me to pay it).

Call the facility where you had your MRI and ask how to request your records and a disc. You will have to fill out a release of information.

Best of luck,

mabeckoff
07-04-2013, 11:08 PM
I am not sure if you can have an MRI after instrumentation was put in, at least that is what I was told. I am having to have a CT scan done instead so I would double check on if the MRI is safe. Also, following up with a scoliosis specialist would be a good thing.
Tamena

I have had many MRI's since my instrumentation was put in.

Melissa

tae_tap
07-04-2013, 11:44 PM
I have had many MRI's since my instrumentation was put in.

Melissa

I ask the doctor I work for why we order CT's for patients with metal instead of MRI and he said that the metal can contridict and construe the area that is being looked at. And it depends on if we are looking at the bone and the health of it or the soft tissue. CT is better for bone analysis while MRI is better for tisue and unknown masses.

He also said that every doctor has their own way of doing things.

Guess you never know till you ask someone. I just got used to ordering tests different for each patient.
Tamena

loves to skate
07-05-2013, 01:04 PM
I had an MRI a couple of months ago and it was a complete waste of time, my money and the insurance's money. I am fused from L2-S1 and the Doctor was interested in seeing L1-L2. That level was completely obliterated because of my metal which is stainless steel. I don't know if different metals make a difference. Maybe Melissa will say what metal is in her back.
Sally

Irina
07-05-2013, 02:33 PM
Everybody else has given a good advise about MRI, but I can add about L4-L5 fusing together. I had my first (and hopefully the only one surgery) this year at the age of 45. The doctor said that my L4 and L5 disks were fused together and it presented a big challenge during the surgery. They were fused together under a weird angle and that made it difficult for my surgeon to deal with.

LindaRacine
07-05-2013, 02:37 PM
Everybody else has given a good advise about MRI, but I can add about L4-L5 fusing together. I had my first (and hopefully the only one surgery) this year at the age of 45. The doctor said that my L4 and L5 disks were fused together and it presented a big challenge during the surgery. They were fused together under a weird angle and that made it difficult for my surgeon to deal with.

Hi...

It's actually the vertebrae that fuse together. The discs couldn't touch one another unless the vertebrae were missing. The vertebrae can touch when the disc degenerate.

--Linda

rohrer01
07-05-2013, 02:50 PM
Meyer,
I have a friend who autofused. Her case wasn't scoliosis, but severe spondylolisthesis (a sideways shift in vertebrae), severe stenosis (a narrowing of the spinal canal), and, of course severe degenerative disc disease, all in the lumbar. They wanted to fuse her lumbar to basically put her spine back together and hopefully alleviate her pain. She was completely afraid of and refused the surgery. Her consequences weren't so good. But her circumstances are different than yours. Her nerves were being severely impinged and she had excruciating pain and numbness, which caused incontinence. Her spine did eventually begin to fuse and her nerve damage is permanent. Like, I said, this is NOT a case like yours. Her x-rays were much more messed up than yours. But yes, I know someone and this is what happened. She is in a wheelchair now and is able to walk only a few steps mostly due to numbness (to the best of my knowledge). I do know that if a nerve is inflamed long enough, it will begin to die. If it dies, that's it for that nerve. But numbness is better than pain, at least for my friend. I know that she is still in a fair amount of pain and is on life-long narcotics. Her pain doesn't seem as bad now, when I see her, as it did when she was going through the "process".

Maybe, in your case, if your spine fuses around your nerves, you could be spared this outcome? This would be a good question for your doctor.

Please don't get scared off by what happened to my friend. Just ask questions.

Irina
07-05-2013, 06:19 PM
You're right, Linda. Thank you for the correction.

JenniferG
07-06-2013, 01:23 AM
Regarding MRIs after instrumentation. I have titanium rods and have had a cardiac MRI. I told them I had titanium rods and they said it would be fine. They told me afterwards the rods didn't interfere with the picture.

Meyer
07-06-2013, 12:37 PM
My Harrington rod is stainless steel, which can cause issues with an MRI, the PA said that their MRI equipment is better than most others in the area (A major hospital), so I guess we'll find out.

I do have a few more questions though...

I'm planning on getting a second opinion at John Hopkins where they are more experienced with scoliosis revision surgeries. So my concern is, if this MRI doesn't come out good and John Hopkins wants to do their own MRI would m insurance be willing to pay for a second one? I am actually planning on going to John Hopkins if the decision is made to do surgery.

Also, a question about incontinence... I think I'm experiencing bladder incontinence (or over-active). I don't leak, er only on my way to the restroom, does this sound like incontinence? (stenosis)

rohrer01
07-06-2013, 03:31 PM
Meyer,
If they think your instrumentation will interfere with an MRI, why don't they do a CT scan? I know it's a lot of radiation, but it's not like you're having one done every day.

Your bladder issues could be from having kids. My friend was numb in that area. I don't know how often she had 'accidents'. But, I do know that when she fell, it let loose. I would ask your doctor about that problem just to be sure it's not from nerve involvement. They will know better than me. I had a little bit of a problem until I got on baclofen. I couldn't jump on a trampoline. I hurt my back and I peed my pants! It was totally humiliating! I know for a fact that I didn't have lower back problems at that time that would in any way cause incontinence.

tae_tap
07-06-2013, 08:04 PM
Meyer,
More than likely if the MRI might have been selected due to many insurance companies don't require a prior authorization (there are those exceptions like Medicare advantage, Cigna, and TriCare) but most companies require prior autos for ct scans. Ct's cost a little more, usually a thousand dollars or so more. But if the MRI does not come out good that gives the doctor ore ground to get the pre-auth pushed through. If a second scan needs to be done I urge you to check with your insurance, because doctors really don't pay that close of attention to that aspect. I would also encourage you to ask why they don't do a ct scan and what your doctor is looking for. Don't be afraid to ask questions.


The bladder issue could be the kids. I have four and have the same problem, especially after having kids.

Tamena