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Horrible pain down leg, numbness in toes

missy9mmissy9 Posts: 16
Hi,

I have been dx with DDD and a herniated disk and have had back problems for over 7 years. It has become constant in the last 8 months now. I have sciatica going down my left leg to the foot and the pain is hard to deal with. My big toe and toe next to that are numb. I cannot feel anything on the top side of the toes and it has been permanent for the last 3 or so years. Could it be caused from a pinched nerve? I have been reading here and found it may be permanent?

I have done P/T a few months ago that helped get the pain out of my leg but did not help the back pain at all.
For the last 2 weeks I have had the worst pain in my leg that is not going away! It is like a pulsating shooting pain all the way down to the foot. I have been unable to sleep, walk much, and I cannot sit at all without it hurting even worse. I have tried to do the "push ups" that I learned in P/T but they are not working and are too painful. I am on 25 mcg/hr fentanyl patch and 10 mg Endocet for break through pain. The meds are not even helping! Any suggestions? The pain has become unbearable.

Thanks for your help,

Missy

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  • dilaurodilauro ConnecticutPosts: 9,722
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    What has been the action plan of your doctors? I assume you have had a MRI. Which disc is herniated?
    DDD is probably the most misunderstood spinal problem. The words degenerative and disease just dont sound too good. But in reality, DDD is normal, its really the aging of our spines. Almost everyone by the time they reach 25 will show some signs of DDD. It can come on sooner or more advanced due to Trauma, Prior Surgery or Genetic situations. For the most part, DDD is treated through over the counter NSAIDs and an approved exercise program. Only in severe cases will surgery be required for DDD alone.

    Sciatica pain can be very disturbing. Once you start with it, you will find that there are not many positions where you can get comfortable. And when you find a position, its just a little while before the tingling pain down from you hip to your toes start in. When people here about others suffering from herniated disc they view it as pain directly in the back. Most cases, the pain starts in the hip and travels down.

    When you said you have had some nerve problems for a number of years now, it very likely could be the result of some dead nerves. Depending on how badly the disc(s) pressed on a nerve root. You can verify the extent of the nerve damage via an EMG test.

    Spinal problems and corrections to it are not that difficult as it was 20 years ago. There are so many conservative treatments... I would go for all of those before considering surgery.

    But the bottom line for all of these decisions are with you and your doctor. We can only provide personal suggestions, the formal medical actions need to come from your doctor.

    Good luck and Welcome to Spine-Health!
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • Have you had a recent MRI and a flexion/extension X-ray? Have you ever been told you have spondylolisthesis or a "slippeage" of one vertebra over the other?

    When you had PT that helped your leg pain, did it also help the pain in your toes? Sciatic-type pain is often caused by a problem in the lower back, and sometimes in the cervical spine, too. It can be caused by the compression of a spinal nerve root.

    It is impossible to say whether the numbness is indicative of permanent nerve damage. You can have a nerve conduction study done by a neurologist or a physiatrist that will indicate the type of damage and the degree of damage, but it cannot indicate whether the nerve is capable of regeneration or if the damage is irreversible. But I am a big believer in never giving up (much to the consternation of one of my surgeons~). I was misdiagnosed with peripheral neuropathy in 2001 and did not develop back pain until 2005. It was only last year that someone finally put things together and realized my numb feet were caused by a pinched nerve in my lumbar spine. I had a fusion surgery almost two years ago to relieve pressure on the nerve. My toes are still numb, but I have more feeling in them than I did previously and the situation is very gradually improving.

    If you aren't doing so already, I suggest you make an appointment with a fellowship-trained spinal specialist to be evaluated, and hopefully, get a diagnosis for your problems.
  • Ron, My pcp sent me to a neuro who said I am a good candidate for spinal fushion surgery but he wanted to do a couple of tests firtst, bone scan & flexion/extension x-ray. I did thoose a few weeks ago and the neuro was supposed to call me with the results as he said he would at my 1st appointment. He called yesterday and said his assistant was going to call w/ in a few days to schedule an appt. for him to go over my results and treatment plan. I have no idea what is going on or why he cannot tell me over the phone what my tests revealed like he said he was going to. So I am not scheduled to go in again until Dec 23! Does that seem strange or am I just reading too much into this?? It kinda makes me worry it he wont tell me on the phone when he said he was going to.

    My DDD is pretty bad according to my neuro and is from l5-S1. I believe the herniated disk is also in the same area. The neuro showed me the disks involved and they are completely black. He said it was basically bone on bone and was probably hereditary. My dad and my aunt, and sister all have bad backs that started at a young age. I also have developed mild scoliosis of the thoracic spine as an adult too. My back is all screwed up!

    I have tried motrin for a long time and was taking 800mg every 8 hours but it didn't work well and it started to bother my stomach so much I had to stop taking it. I have tried other meds too, tramadol, celebrex, etc. None have really helped. I have also had the pain in my hip and before the mri I had wondered if it was my hip and not my back bothering me.

    Gwennie, yes I had both those tests done but have not got the results for the flexion xray. Due to pain I wasnt able to flex much but the neuro ordered it because I told him I can actually feel my back "slip" when it goes out. Can not being able to move much alter the results? My pcp accidentally popped my back several times by pushing on it and he said my spine was too mobile. He actually made me have worse pain than when I got there!

    My MRI didnt show spondylolisthesis. Also P/T did not help with the numbness in the toes at all. It is more numbness than pain. It has never gone away and on the rare moments they are not numb I have severe pain in the toes. That has only happened a few times over the years though. They are usually just numb all the time. I am glad to hear it may not be permanent. I have dealt with my numb toes for so long now it wouldnt be the end of the world if they stayed that way. Things could be worse!

    Thank you both so much for your responses! Which is better a neuro or an Ortho? I originally saw an ortho who specializes in the spine but he told me that my insurance wouldnt pay for surgery until I was in constant pain for a year! My pcp said that was carp and sent me to the neuro who did his back surgery a few months ago. This neuro said I was a good candidate now. Since my pcp had a good experience with him and is doing well I feel confident with him as my dr.

    Do they usually do steroid shots for sciatica? I cannot have any steroids and my neuro seemed ok with that but I have read on here that sometimes insurance requires it. I sure hope not!

    Hugs,

    Missy
  • I think that your situation is quite severe given the DDD and the L5-S1 situation but based upon your posts I would go with the advice from your PCP to see the neurosurgeon especially given your PCP had great success with this neurosurgeon from personal experience so you can not ask for anything better.

    While I admit that insurance companies can be difficult I think it all depends on the case. To say that you must suffer for one year before they will allow a surgery or force you to do an ESI treatment if you can not for medical reasons is a bit silly. They may give the doctor trouble but lets be honest here also.

    It is part of the doctor's job to tell and convince the insurance company that you need the surgery now. From my own experience the doctor would tell me bluntly that they would have to write certain things on the insurance claims, true or not to get the process moving. Unfortunately that is the US system but given what I hear about the NHS system I do not feel that bad.

    -js
  • There seems to be a prejuidice on this board toward using a neurosurgeon for spinal surgery, but I do not share that bias...especially with doctors who have trained within the last fifteen years or so. The fellowship training to become a spinal specialist is very similar now. More important I believe is where the doctor did his training, his overall experience with the type of surgery you need, and then minor things like how the office is run, the surgeon's personality

    If you feel comfortable with this neurosurgeon, that is the important thing.

    Spondylolisthesis does not necessarily show up on MRI. That's why I asked if you had the flexion/extension X-rays? Mine did not show up and I'd been told I only had degenerative changes common to my age group...so I went to my first surgeon expected to be told I was not a candidate for surgery. Instead I was told I had no other option but to have fusion. I was in shock! I had no symptoms except for terrible sciatic-type pain....

    They do usually suggest six weeks of conservative treatment before recommending surgery. I do not know if insurance "requires" it or just recommends it. Steroid injections are commonly given as sometimes they do resolve the situation. However, if you can't take them, you can't take them and they will do something else!

    If you have your instability at L5-S1, that refers to one segment. There is one disc between the lumbar 5 vertebra and the first sacral (S1) vertebra. It is the second most common area for instability and for disc problems after the L4-L5 segment. The L4-L5 segment takes the brunt of the body's movement, and as a result, is often the first to show signs of degeneration or disc herniation.

    It may be that your problem is sufficiently complex that the doctor does not feel comfortable trying to discuss it over the phone. He probably wants to show you the MRI and use it to describe the problem and show you how he would fix it. I wouldn't worry about it. This is a busy time of year and that may be the first time he had open.
  • Js, I do feel confident in my choice so far. My pcp is doing really well after his surgery which makes it an easier choice. The neuro didnt act like it was a problem that I couldnt have the steroid shots. I was just wondering because I have been reading on here that insurance companies like that sort of thing. I am glad to hear that is not always the case.


    Gwennie, Thanks for all the info. I do not know much about the back. I am assuming the neuro may have found something more than he originally thought when he told me he would call with the results. He was trying to be nice since it is an hour drive for me to get to his office. Whatever showed up must be a bit more complex than he originally thought so you are right he probably needs to explain in person.

    I just hope he doesnt tell me I dont need surgery anymore! I guess that is what I fear the most, that he wont be able to fix what is wrong. I just dont know how much longer I can take this pain and being confined to my home and bed.

    How are you doing since your fusion? I know it doesnt always take away all the pain but does it help with quality of life? I notice from your sig. that you have had a lot of problems too!

    Hugs,

    Missy





  • The hospital I had my tests done has an online patient account where I can see all my medical records. My recent tests where finally posted!

    My Mri says: There are degenerative bone marrow signal changes at endplates abutting L5-S1. There is disk dessication. There is a small left paracentral disk protrusion which abuts the left S1 root and the subarticular recess but does not significantly deviate its course.

    Flex/extension xray: minimal retrolisthesis of L3 on 4. (doesnt give a measurment of how much)

    Bone scan: Normal (Yeah)

    So basically my disk is slipped backwards?? I wasnt able to flex very far front or back. Can that alter how much slippage they can see on xray? Could the retrolisthesis and/or the disk protrusion be the cause of my sciatica?


    thanks for any help!

    Missy
  • anyone? Are the disks I posted above touching my nerve? Could the retrolisthesis and/or the disk protrusion be the cause of my sciatica?

    I am just so tired of this. The back pain is much easier for me to deal with but the leg pain is almost unbearable. Nothing including pain meds seem to help much. The only thing that seems to help a little is if I stay in bed all day, find a comfortable postition and dont move. I cant live like this anymore. I just hope when I finally have surgery this will improve.
  • Missy - have any of your docs suggested you taking Lyrica? I too was suffering from unbearable sciatic leg pain from top of thigh down to my toes. I then had a steroid injection at my herniated disc location (L4-L5). The injection actually made it worse!

    However, while at the hospital (could not take the pain - no position - even laying flat like you say was helping so I went to the Er) they started to give me Lyrica along with traditional pain meds (OxyCotyn in my case). I still have considerable pain, but the Lyrica cut it in half.

    Best of luck to you. It sounds like you have a couple of problem areas - the first thing you need to do is get rid of the pain - it is absolutely dibilitating and erodes your faith and psyche.

    God Bless & Good Luck!
  • missy,

    I am going by my experience for a L4-L5 herniation so bear that in mind but I find that the course of action my doctor took is pretty much the same as others.

    1) Your current doctor should be giving you an anti-inflammatory like, advil, aleeve, diclofeic sodium. I had great success with the diclofeniic. Next nerve drugs like Lyrica or Neurotin and third a muscle relaxer like soma.

    2) Your current doc should be doing some form of PT. For some they hate it but I have found the exercises on this site to do wonders. Keep in mind they are not exercises in more traditional sense but meant to stengthen core and get you mobile. The worse thing you could do is loose mobility. Walking is by far the best thing for your back.

    3) Lifestyle changes as this is the most important, try to stand more at work and walk often. Do things to relieve pressure off your back like laying on the floor and putting your legs up on a chair. No bending, twisting and put your legs up on a foot stool while sitting.

    4) Ice/Heat 20 minutes atleast 3 times a day of each on your lumbar area. This is a must.

    Be ready for a battle mentally....you need to focus on your recovery and not just your life. This will take time and you have to understand that.

    Hope you get better sooner than later...

    -js
  • Mike,

    My dr has not mentioned Lyrica. Is it expensive because it is still new? Is there another drug that is simmular I could try first?

    Wow the steroid injections made things worse?? I am so glad I cannot have those shots! It sounds like it is really painful when they inject it and most of the time they dont even work for long. Steroids usually just "cover up" the problem.



    JS,

    1. I was on many anti- inflamitory meds. I have tried ibuprofen 800mg 3x day until my stomach couldnt handle it anymore. I also tried tramadol, indomethacine, melioxicam, naproxen, and clebrex. Some caused problems with my stomach or did not seem to help. However the reason they may not have worked well could be because my previous dr wanted me to rely on them and had me on a super low dose of percocet. The 5 mg of percocet and those pills listed above did not help at all.

    I have used soma off and on for years with my back problems. I will ask my dr for an rx to see if it helps. Is there any nsaids that are easy on the stomach?


    2. I did p/t a few months ago for about 5 weeks with no sucess. I do try to get up and walk a little each day even if it is extremely painful.

    3. Thanks for the suggestions. I will try and see if they help. Although it is very difficult to get off the floor. Any suggestions/ tricks to make it easier?

    4. I was using ice but my p/t told me after the first few weeks of the initial injury it wasnt going to help much so I stopped. He told me to use heat. I was using heat which did help at least temporarily but now I am wearing the fentanyl patch I cant use it anymore. I will try ice again.

    Thanks so much for the suggestions. It is really hard to deal with. I have been in constant pain for about 8+ months now! It is starting to wear on me now. It is hard not being able to take care of my family. My neuro said I was a good candidate for surgery so hopefully it will be soon!

    missy


  • 1. As far as NSAIDS go by definition they can be bothersome to the stomach. You have some very high dosages there at 800 mgs. I have had much better success with sodium diclofenic but at a dosage a 50mg tab 3x a day. I have a meal with it all the time and good to try and move if possible right after you have it. You may want to try lower dosages as far as stomach goes.

    Soma was great for me when I was really bad. I suggest you get back on it and see if it helps.

    For many Lyrica or Neurotin have been live savers. I did not find them helpful. They do take time to work but they are not expensive. Ask your doc about them. In your case you should be working all three angles given so much pain.

    2. In that much pain that you can not walk you probably should not do much other than things you could do from bed and walk. Look on the site and see if exercises like mini-cobra can be helpful.

    3. I would try and do these exercises in bed first. If walking is that painful. most of the ones on this site can be done in bed.

    4. I disagree totally with your PT. I may be wrong but I believe he is talking about more traditional injuries. I still use it and have success with both.

    I have found the combination of ice/heat works wonders. It must be placed on the back not the other places you are feeling the pain but at the center of the pain which sounds like lumbar area.

    You have to keep getting the inflammation down which ice is the natural answer. Than the heat will put back in the blood to help in the healing. But you also need to do some form of movements to work it. Mobility is so important in the healing process.

    May I ask are you bed ridden? Any trouble with controlling bowel movements? Numbness or loss of feeling anywhere? These are signs that mean you need more immediate attention.

    I know you do not want to hear this but I think you should talk to your doc and reconsider the epidural. Steroids have the wonderful effect of bringing down inflammation if only temporary. I am not sure in your case though.

    -js
  • My dr decided to up my fentanyl patch to 50 mcg/hr. He wants me to see my neuro from now on for pain management.

    1. I was only on 800 mg of the iboprofen, the others nsaids my doses where around 25 mg 2-3 times a day. I will ask the neuro about Lyrica when I see him the 23rd.

    2. Thanks I will look and find some exercises I can do in bed. I have been trying to do the cobra, that is the half push up type thing right? It used to help a great deal but now I just find it extremely painful. I am still trying though.

    4. I will try ice again. I am pretty much bed ridden. I am only able to walk a little each day and the rest of my time is spent in bed. I can't sit without aggrivating the pain even worse so my dr said I am not allowed to sit anymore. I do not have trouble with bowl movements at this time. The only numbness I have is in my toes however I have noticed lately the whole foot has become more tingly. My dr said I have foot drop now.

    I am unable to have steroids except the oral steroids I take on a daily basis to live and regulate my blood pressure/electrolytes. I had Cushings disease a had/have a pituitary tumor. My body was mass producing its own steroids. I had 2 pituitary surgeries that where unsucessful so they had to remove my adrenal glands to stop my body from making the high doses of steroids. Since I still have a pit tumor and part of the adrenal the surgeon missed there is always a possibility I could get the disease again. So I need to stay away from those type of steroids because they could potentially start something up.

    Missy
  • Just a side note re: steroid injections...

    Have you checked with your endocrinologist about the injections? The steroids (usually Solu-Medrol) used in the injections usually only have a local effect (i.e. only on the area injected) and its rare to have systemic effects from them. Most are limited to only 2-3 per year.

    Many, many people do find benefit from them. They will not "fix" your problem but maybe you can find some relief until surgery (or whatever your NS decides) so that you can improve your quality of life. Personally, I had very temporary relief from the first one and the 2nd one seemed to make things worse (who really knows?) but I followed it shortly with another round of oral steroids and that seemed to do the trick (this was not the typical thing to do but we were trying to help/stop the progression of neuro symptoms). I still have numbness in my leg, foot & toes but I can function because I have less pain.

    Christine

  • I have DDD and had a L5-S1 herniated disc with a tear and the nerve was in contact with the left exiting L5 nerve. It's still painful for me in my back but have found the epidural injections helped somewhat and Cymbalta seems to help with the numbness in my foot and leg though not completely. I thought Cymbalta and Lyrica weren't covered on my drug plan but they do make exceptions. I hope you have less pain and more answers soon. Take care. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • Hi Missy,

    I tried to read everyones responses to you but since I just took something to help me sleep, I think I may have missed some things. If I ask anything that you have already answered, I apologize.

    Have you contacted a pain management doctor, or is the neurosurgeon the one administering your meds? If you haven't seen a PM doctor, I highly recommend doing so. I had to wait a year before my insurance would cover any visit to the doctor for my back at all, because of "pre existing condition". It's such nonsense, the insurance companies are just horrible.

    I take Lyrica & Metanx for my horrible leg nerve pain. Mine appeared post op but at first I not only had leg pain but burning and then numb feeling in the top of my foot and big toe. The Lyrica & Metanx have helped tremendously. They may help you as well. The Metanx has worked for diabetic people who had complete loss of feeling in their legs. My doctor gave me savings cards for both Lyrica & Metanx... so even if your insurance won't cover it, ask your doctor for these coupon savings cards. The Lyrica one can be reused for a whole year and each time your payment cannot surpass $25. It's pretty awesome.

    One other thing I would recommend is keeping on top of your doctors for info. If they say they will call you back within a certain time frame and you don't hear from them, pick up the phone and bother them. The squeaky wheel gets the grease... I know from experience.

    I hope things start improving for you. It's not fair to have to live in such discomfort.
  • I occasionally had lower back pains for 10 years caused by lifting a heavy object. The right leg sometimes tingled and twitched... The original cause may have been sitting for years on a wallet in the right rear pocket.

    One day my right leg suddenly lost all feelings and controls and I was in excruciating pain from the lower back down to buttock, leg to toes. I had no control or feeling on the right leg. The pain was so bad I could not stand or walk.

    I went to primary physician, had an MRI, diagnosed with probabale stenoses between L3,4 and 5. Was prescribed pain killers. Dr. said if pain doesnt go away, treatments would prgress to steroid injections and eventually surgeries. I continued to have lots pains with varieties of medicines. I could not sleep, could not carry an object the weight of a phone book without a lot of pain.

    After putting up with the pain for 7 months, I got fed up and went to an MD, an internist with trainings in osteopathic, chiropractice, accupunture. His manipulations of the spinal collumn got rid of most of the pain after 3 visits. It's amazing how he can feel the areas of pain along my spine by touch with his fingers.

    Now I can walk and carry heavy objects without pain but still have DROP FOOT problems. I can control the pull up of my foot and toes to a limited degree. The Dr. prescribed a strap to pull up the ball of the foot and toes as I command it to rise.

    I bought the $250 THUMPER massaging machine on eBay for my back and leg/foot. Seems to help a great deal.

    I have not but am starting to do excercises to strengthen my back, to restore control to my foot/toes and to fix the DROP FOOT problem.

    There is hope with the right treatments and exercises. Take care of your pains as soon as you can and dont give up.
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