Other lumbar scoliosis patients w/50'ish curve

[purduepam]

Hi everyone!
I'm a 44 y.o. female w/a 52 to 55 degree lumbar curve. When I was first diagnosed at age 14, it was 41 degrees. I've recently decided not to go the scoliosis spinal fusion route and would love to hear feedback from others in similiar situations--thanks!

Background:
I've seen three orthopedic surgeons in Houston and they agree that I have the option of waiting to see if/how much my scoliosis progresses in the next few years. Plus, I'm in a transitory/professional/financial/health ins. sitatuation and need to achieve stablity in that area of my life before I can even consider the scoliosis spinal fusion surgery. And one physician does not recommend the surgery for my current degree/progression, etc.

In the meantime, I have started physical therapy in order to strengthen my muscles and have started two meds (anti-inflammatory arithritis med for my lumbar region and nerve pain med for left leg/hip area). My lower back pain has always been manageable but the newer left leg numbness/leg and hip area pain has become a quality of life issue. But no one is positive that it is a scoliosis-only problem, so w/time we can see how the pain relief/management is w/the non-surgical options.

If anyone is/has been in a similiar situation, I would love to hear from you. Thanks for your time

PurduePam

[dawney]

I managed my back pain most of my life but when the right leg and nerve pain started that was what drove me to the surgery. Good luck with your pain.

[briarrose]

Hi

I can relate. My curve was 18 degrees at age 16 and my doctor told me I was done growing and it wouldn't progress anymore. I have very bad back pain when I was 20 so I went to a new doctor. My curve was now 33 degrees. He only wanted to do xrays every 2 years and didn't seem to care that I was in pain so I found a GREAT doctor at the University of Pennsylvania. I had xrays done in June and my curve is now 44 degrees. He said I'll probably need surgery, but wants to watch it for a few more years. Are you in pain?

[BETall]

Hi everyone!
I'm a 44 y.o. female w/a 52 to 55 degree lumbar curve. When I was first diagnosed at age 14, it was 41 degrees. I've recently decided not to go the scoliosis spinal fusion route and would love to hear feedback from others in similiar situations--thanks!

Background:
I've seen three orthopedic surgeons in Houston and they agree that I have the option of waiting to see if/how much my scoliosis progresses in the next few years. Plus, I'm in a transitory/professional/financial/health ins. sitatuation and need to achieve stablity in that area of my life before I can even consider the scoliosis spinal fusion surgery. And one physician does not recommend the surgery for my current degree/progression, etc.

In the meantime, I have started physical therapy in order to strengthen my muscles and have started two meds (anti-inflammatory arithritis med for my lumbar region and nerve pain med for left leg/hip area). My lower back pain has always been manageable but the newer left leg numbness/leg and hip area pain has become a quality of life issue. But no one is positive that it is a scoliosis-only problem, so w/time we can see how the pain relief/management is w/the non-surgical options.

If anyone is/has been in a similiar situation, I would love to hear from you. Thanks for your time

PurduePam

Hi PerduePam :
I was in a similar situation . I am pain free now . I 've learn to practice the 3 dimensional conservative Schroth method from Germany , with great results for me .
Please go to the internet for more information :
info@skoliosehandlung.de and
SOSORT.org
Stay well, BeTall

[OneGoneMom]

My lower back pain has always been manageable but the newer left leg numbness/leg and hip area pain has become a quality of life issue. But no one is positive that it is a scoliosis-only problem, so w/time we can see how the pain relief/management is w/the non-surgical options.


YES YES YES, thank you. I've been dealing with this for 4 years now, and no one seems to know how to help me. Only recently, well 2 years ago the chiropractor discovered my scoliosis. While he did help me with the lower back pain, the hip/leg issues was never relieved. Trying to explain it seems to be hard too. My MRI revealed only a 30 degree curve, all think this is not a big deal, and tend to just shrug it off. Neuro surgeon won't touch me because it is scoliosis. They make me feel like I'm crazy or a big whiny baby....I'M NOT! My goodness I gave birth naturally to 3 children without a whimper. I have a very high pain tolerance. This is just driving me crazy. I too am on anti-inflammatory/pain meds and muscle relaxers. They don't really seem to help with the leg/hip issue so I quit taking them. Having difficult time sleeping, sometimes it's an issue laying and sometimes it is not. Sometimes sitting relieves it sometimes it doesn't. I'm just so tired.
I am so sorry to say this, but I am so happy to hear others have the same problem.
thanks and keep us posted on how your therapy helps.

[Nancy T]

Hi Pam et al.--I don't have back pain, so I can't address the question at hand.

However, if I may, I'd like to ask one of my own, seeing as how people have mentioned numbness, leg pain, etc. on this thread.

I am age 49 and have a 35-degree lumbar curve--recently evaluated for the first time since adolescence, although I have no idea what the curvature was then. I am to get a one-year follow-up x-ray to make sure it's not progressing.

My question is: if you have numbness, weakness, paresthesia, or nerve pain in your legs, have you had an MRI of your spine, and DOES IT SHOW any compression of the nerves?

I have had various neurological symptoms in my legs over seven years, so when I saw the spine specialist, I asked if the scoliosis could be causing them. He ordered lumbar and cervical MRIs (cervical because I have Lhermitte's) and said that they showed NO nerve problems or lesions. (I had once been under suspicion of MS.)

So I'm wondering whether it's possible to have scoliosis-related nerve problems without any pinched nerves showing up on an MRI?

Thanks, and my sympathy to all those who are suffering from pain.

Nancy T.

[Frosty]

Nancy too be honest a 35 degree curve is not that bad, it is below the threshold for surgery which is usually 50 degrees. I don't see how it could be causing any of your symptoms although only an expert could be sure about this. Are you suffering from stress at the moment because I think this may be the cause if the doctors can not find any physical problem. I don't think it can be anything too awful because you've had symptoms for 7 yrs and if you had a serious illness chances are it would have become obvious in its effects by now.

purduepam, I think that your going to wait and see what happens and this sounds sensible. If you were a 16 yr old surgeons would advise surgery I guess. In adults I think that doctors try conservative methods first. If your scoliosis is not getting worse or it may worsen over time but only slightly then I think that avoiding surgery is very wise. If there is evidence that it is worsening then you will of course need to make a decision as to what you want to to but I think for the moment waiting is the only sensible option. I think the best exercise you can do is probably swimming. This will not strain your back but if you search on the net you will find that no form of exercise has any effect on the progression of a scoliosis. But swimming will improve your overall fitness and health.

[Nancy T]

Hi Frosty, thanks for the reply. Yes, I know that a 35-degree curve is not bad and does not need treatment. I am only trying to see whether others with neurological symptoms in their legs or elsewhere have had clear spinal MRIs, as I have.

I know that my illness, whatever it is, is not serious, but something's definitely wrong, and it's not stress. I have dizziness, hearing loss and auditory brainstem abnormalities, trigeminal-nerve symptoms, Lhermitte's (which means some kind of damage/lesion to the cervical spinal cord), etc. Autoimmune and neurological diseases can be very mild, and can be difficult to diagnose.

I'm not worried about my curvature, just wondering if anyone else has had MRIs and what they showed.

Nancy

[briarrose]

Hi Nancy

I can relate to some of your neurological problems. I had a full spine MRI in June. I have several degenerative discs, which I'm guessing is from the stress of the curve. I also have a small syrinx in my cervical spine. My doctor said neither of these would cause my problems (arm numbness mainly, sometimes leg). I actually think it's knots in my muscles pressing on the nerves. But it does make sense that a crooked spine would cause nerve problems, though they didn't show up on my MRI. So I guess I wasn't any help. Sorry.

[Frosty]

Nancy and briarrose, your symptoms do not sound as if they have anything to do with scoliosis. Nancy, have you asked your doctors if they think that stress might be a factor? I have gone through periods when my scoliosis has hurt then suddenly the pain has vanished. The most likely explanation is stress or nervous tension I guess.

[Nancy T]

Frosty--sorry you have experienced times of pain with your back. I do not have back pain.

As for whether my symptoms are due to stress--the answer is no. Stress does not cause 18 solid years of DAILY dizziness, electric shocks in your knees or feet when you bend your head down (Lhermitte's), hearing loss, and most of my other symptoms.

No doctor--at least no neurologist or other specialist--has mentioned stress to me, although at least one neurologist DID entertain the hypochondriac hypothesis (which is also incorrect, although I can see why he might have thought it). For the dizziness I tried Xanax and Ativan at different times, which should have helped if it were stress, but these had no effect except that Ativan made me dizzier.

I know that stress can have strange and varied effects on the body, but it simply could not account for all or even most of my symptoms. And I have a pretty low-stress life and am a low-stress person--I never have muscle tension, no back or neck aches, hate massages.

Briarrose--sounds like you are in the same boat--having no definite explanation for your neurological symptoms. One would think that nerve symptoms would show up as pinched nerves or whatever on an MRI, but I guess that just isn't always the case. All the doctors have been able to say is, "can't see any cause for your symptoms," but the symptoms are definitely there! Oh well, what else is new.

Nancy

[OneGoneMom]

Hi Frosty, thanks for the reply. Yes, I know that a 35-degree curve is not bad and does not need treatment. I am only trying to see whether others with neurological symptoms in their legs or elsewhere have had clear spinal MRIs, as I have.

I know that my illness, whatever it is, is not serious, but something's definitely wrong, and it's not stress. I have dizziness, hearing loss and auditory brainstem abnormalities, trigeminal-nerve symptoms, Lhermitte's (which means some kind of damage/lesion to the cervical spinal cord), etc. Autoimmune and neurological diseases can be very mild, and can be difficult to diagnose.

I'm not worried about my curvature, just wondering if anyone else has had MRIs and what they showed.

Nancy

Hi Nancy, I had an MRI, I wouldn't say it was clear, but they couldn't see a pinched nerve. The way the Neuro-surgeon explained it to me is he's pretty sure it is a muscle issue. The pulling of the muscle on one side of the back and the sort of smashing of it on the other. However, my MRI showed some degenerated discs along with good ole Arthritis. He seems to think the weather has something to do with my issues, however the pain is there daily 365 days of the year. I haven't noticed weather making a difference. I did get the impression he did NOT think the scoliosis had anything to do with my pain/numbness. It is odd though how many other people tend to have similar symptoms. Coincidence?

[Cakedec]

Similar symptoms before/after fusion

Hi Purdue Pam,

I had similar sciatic pain going down my leg and in the sacro-iliac area before surgery. My lumbar curve was about 76 degrees. The whole area had inflammation which was irritated by walking more than a few yards. At times I was forced to use crutches when it became acute. I was told my pelvis was twisted and uneven from the scoliosis (double S curve in 70's) and wore a heel lift which did seem to take stress off that side. They told me that the MRI showed nothing but scoliosis and arthritis. I did have some relief of symptoms from physical therapy or gentle lower back traction from the chiropractor.

Finally, because of the continued progression of my curves and disability from working, I had surgery the end of July from T5-L5. My lumbar curve was reduced to the 40's, but the symptoms have continued in the sciatic joint area. The physical therapy will not start for another month, and I am hoping for some relief from that. My surgeon said that it is too early in the healing process to know what whether things will get better or not.

My advice for those of you who have these symptoms with your scoliosis is to have it evaluated the best you can before having surgery as sometimes it helps with it and sometimes not. Try the physical therapy, injections, etc. that they recommend as these can be helpful for some. But after having the scoliosis surgery not fix this problem, I feel that it is a whole separate issue. I just hope that I can find someone who will look into it now that I have had the fusion surgery.

Deb
age 47
posterior surgery 7/24

[purduepam]

Left left mumbness/hip area pain

Hi everyone!
Thanks for all the emails. It is interesting that many of us w/scoliosis are also experiencing leg/hip pain/numbness. . . . . I'm getting more and more convinced that this is not primarily a scoliosis issue. And certainly not convinced that scoliosis spinal fusion will help w/the leg/hip pain/numbness--thanks for that info Deb.

Yes, I've had an MRI which showed bone spurs that may be contacting nerves, but it wasn't conclusive.

One bit of good news: My physical therapist was able to aleviate some pain w/stretching exercises that release the iliopsoas muscle. I think she may be on to something by focusing on the muscles.

One ortho prescribed Neurotin (generic brand name is Garapentin) for the leg/hip pain. Anyone else taking this one?

Exercise: Swimming--yes, yes! I'm a life-long swimmer but had slacked off the last few years. I'm swimming again and doing aquatic excercise/stretching as part of my physical therapy.

I'm definitely benefitting from the physical therapy, but too soon to tell about the two new meds. Here's hoping In the near future, I may go see a neurologist since orthopedics tend to zero in on the scoliosis and may be overlooking other components of our "complicated multi-faceted" pain.

PurduePam

[sweetness514]

I had surgery and it helped a bit but I dealt with sciatica for years after surgery as well, and now I find that sitting in good chairs and not stretching it too much helps me, as well as walking and swimming.

But many people I know of all ages have experienced sciatica at some point and they don't have scoliosis and/or nerves problems that can be seen on MRI's.