Sciatica, it's crippling me: Who to turn to?

in reply to @denman55 I too have this problem, and there are some great stretching exercises you can do while laying down. One of my neighbors is a physical therapist at the hospital where I go for treatment, and she told me about these exercises yesterday. I would describe them, but you can more than likely find them online. I am still waiting for Home Health to come out to show me how to do the exercises, but so far no go. I understand they are busy with people who need them a lot more than I do, and I am fortunate to have two neighbors who are physical therapists.

I have Excruciating Sciatica Pain down my right side. it starts at about Belt level, at what feels like a very specific spot about the size of a half dollar coin. Then it rolls down the back of my hamstring (the lease pain is here), but then it goes into the right side of my foot (pinky toe) and it feels like someone trying to pull a HOT piece of barbed wired through my leg and then backup it again. They can NOT find anything wrong with my back, other than what a typical 49 year old man would have, and I have had L5/S1 fusion.

I also have a pain in my neck, on the right side, that runs down into my shoulder and then into my arm and occasionally my hand. I have had MRI's that show my neck has some compressions, and arthritis. (basically messed up neck).
Could the Sciatica be related to anything in the NECK ?? I have read Medical Journal Articles of a few cases that indicate that they could.
I have tried EVERTHING, except the Spinal Stimulator, for which I am scheduled to have this installed in a few weeks.
I am looking for anyone out there that has had there entire right side that has severe pain, with a majority of the pain bein Sciatica, that has found some sort of relief.
Thank you!!

Boy do I feel your pain!!!! I have the same and more. Everything with an S I have, I had lower laminectomy with fusions L3,4,5 ?? not sure but think he should have done more, and a lot of arthritis removed. I was OK , for a bit. I am thin so my spine sticks out of my back and has shifted to the right side with a huge curve. Not attractive and can even be seen through a shirt , I can not sit back on anything without a cushion,, standing , sitting all will trigger the sciatic nerve from the back, a major spot that is a large bulge , which is the major source of pain, my Dr still has never told me what it is, scans just show major anatomical changes. I had a choice from Ortho Drs, to do a full on spinal surgery with rods, poles, cages etc,, I said no and my neurosurgeon agreed to do what he did that would be the least invasive.. He is a great Dr, and I did feel like a real person again,, but now I am much worse, I used to be able to walk 20 miles a day, hike up mountains, walk through an airport for hours,. I refuse to let this get me so I still do my treadmill 2 hours a night. granted not the speed I used to or incline,, I walk through the sciatica pain , if it gets bad, I stop , take the right leg and pick it uo with the left hand and stretch it all the way over to the other side,. it feels good and will break the cycle,, until the next time.. I started to do on the floor PT .. laying flat on my back, lifting one leg at a time and stretching,, then knee bends,, then crossovers,. If I can make a habit of this it helps.. On a normal day I work I am on my feet all day and I still have to smile through the pain,, there are times I have to just sit at my desk and put my legs up,. have a roller device I now use to roll on the thigh ,, it helps... What made me respond to you was your desire for the stimulaor. Please seriously think about this,,. My Mom had 2 failed back surgeries plus I am sure she never did much for PT, as she is lazy... so she opted for the St. Jude one when it first came out, the thing never worked,, eventually they removed it. We all begged her not to get another but she opted for that quick fix,,, well that quick fix ended up nearly costing her her life and it has sucked the life out of me.. after about 5 years with that in her, again never really worked as she was always whining about her back pain and on pain relievers , and then spending more and more time in bed.. One day her back was wet.. I looked and she had a gaping hole in her spine the size of a quarter, that was beyond anything I have seen,, I had my dad take her to the Dr right away,, very poor medical here, she was being treated for wound care but it wasnt until the right Dr, looked at her , which was my spinal surgeon,. said the box was visible in the hole and full of bacteria and he did the surgery to remove it,, Dr,. stated the leads were loose or disconnected , those are wires in your body,, foreign substances... he said the box became contaminated , who knows for how long , inside or her that eventually it ate away through her skin,, there is much more to this story but I gave you enough,,, I do not know have statistics to say how many people it has helped or what the infection rate is.. but please ask. My back is severe and I would never put one in,, I have looked into these belts you can wear that have the stimulator on the outside on the back.. ask your Dr about that , a cousin of mine got one,, a company neuro med makes a pad you affix to your spine I am researching,, I am sched, for another MRI to find out what happened , You are not alone,, . and about the neck,, yes the neck is part of the spine, But i do not believe it controls the part that causes sciatica .. I had cervical 3 levels 3 years ago,, horrible surgery, still have pain at night, but I do exercises before bed to loosen them up and wear a collar at night,, I will tell you stress is the #1 reason on top of all of the other life issues that rears its ugly head when we least expect it,, I am a stage 4 metastatic double cancer survivor with 15 months of chemo,,that was hell but I will tell you living with chronic pain on a daily basis has been a lot harder and it can really get you down,I wish you well and to receive some relief from this way under researched phenomena of spinal pain,, Carry on!! Jacquie

@justclintdavis Hello and welcome to Connect. You are correct that sciatica can be caused by spinal cord compression in the neck. I am a cervical fusion patient and prior to surgery, I had pain all over my body that was being caused by spinal cord compression. Part of that was sciatica, and my pain would change locations when I changed neck positions. Having surgery that decompressed my spinal cord fixed all of that. I found literature that sometimes sciatica is the symptom that leads to the discovery of spinal cord compression. I will share some literature here and you may want to discuss this with your surgeon in case you want to change course and address the issues in the cervical spine. Many surgeons miss this and all the surgeons I saw before coming to Mayo also missed it. All of these articles describe phenomenon called "funicular pain" and there is no diagnostic test for it except that decompression surgery fixes it which proves the diagnosis.

I have not had a spinal cord simulator and don't need one because my c5/c6 fusion took care of all the symptoms. If your surgeon does not want to consider this as a possible diagnosis, you will need to get another opinion and put this literature on the table at the start. I found myself in that position of having been dismissed by a surgeon, and then finding this, and no doctors who knew me would help me address it with the surgeon who missed it. I suggest asking it as a question by asking if your case is like these cases in literature that you found. Let the doctor take the information and get back to you after having time to look at it and think about it. You don't want to put him on the spot and embarrass him if he has not heard of this. They must find a relationship between the imaging and your symptoms to justify surgery and the spinal simulator is because you have pain with an unknown source. I had my surgery at Mayo and the surgeon was familiar with this type of symptom.

Good luck in your quest!

Jennifer

Thanks for the info. Could you please describe what decompression surgery entails?

THANK YOU very much, Jennifer. I have read the EXACT article from the Medical Journal link you have sent me. I have almost the Identical image in my cervical spine. The doctors will not do anything though, because I do NOT have the typical symptoms that come with the neck issue (loss of strength or mobility) It hurts in my shoulder and down my neck as well as my buttocks, Leg and foot. I do NOT understand why they can not just correct this!! It does show compression, but not severe enough in their opinion for surgery.
I want to come to the MAYO, but my insurance will not cover the cost. I wish I had a way to cover it, and i would take the time off to come. It is a sad circumstance, when I know this is what is causing the issue, but no one will take the "risk " to help me.
I appreciate your support and kind heart in sending me your links.

Clint

@marieltha Decompression is just taking the pressure off and many spine procedures fit the description. In my case, may spinal cord was getting squeezed.

@justclintdavis
Clint, are you able to change insurance to another that would have Mayo in their network? If not, look for a spine surgeon in your insurance plan and when you go for a consultation, give them the medical literature and ask if your case is like this in the literature right from the start. Mayo does have links to various hospitals across the US where doctors can consult Mayo specialists and you receive care locally. It’s called the Mayo Clinic Care Network. Doctors can also independently consult Mayo, but may not think they need to do it. It took me 6 opinions before I found a surgeon who understood this connection and that was at Mayo. I know how frustrating this is and you’re right. Surgeons don’t want to take a chance when they don’t understand the problem, and they worry about other complications. You have to keep searching for the best specialist you can find covered by your insurance. You can also call your insurance company for names of their best recognized surgeons.

Jennifer

@jenniferhunter @justclintdavis - Here is a link to the Mayo Clinic Care Network that Jennifer mentioned: https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members.

Thank you @jenniferhunter and @JustinMcClanahan
I am located in Tulsa, Oklahoma and have a private HMO. I could potentially switch to BCBS, but I would have to look into it. It is made so hard for the recipients to get responses and answers, because i personally feel that they think we are making up the pain. It is not just an ache and pain, it is a neurological pain which is TOTALLY different.
I share my story and pain with everyone I know, hopeful to find an answer. This BLOG site has been the best thing so far..... I wish I had the personal funds to come to MAYO, or I would have been there yesterday...