Haven't been able to sit for the past 5 years

[james163ca]

I am 48, average build, not overweight and live in San Diego. I have DDD at L4-L5, which is the result of annular tear. I am not able to sit. I feel burning and tingling on my buttocks and back of my legs when I sit. I feel tingling and burning on the bottom of my feet if I stand more than 10-15 minutes (not my buttocks or legs). I can walk for 20 minutes or so. My feet sometimes burns even when I lay down on my bed. I have 5 pillows on my bed to put myself in a proper position and be able to rest.

I have minor back pain on the left side of my back.

I have been doing PT two times a weeks for the past two years. I do exercises which are supposed to strengthen you core muscles; such as Medex machine, back extension and Plank. Yet, I did not have any improvement. If I stop PT, my back muscles become very stiff and I cannot even bend forward.

I have seen 5 orthopedics and neurosurgeon. One of them recommended fusion and the rest said "they don't see my symptoms in MRI"

I work laying down on bed. I am in horizontal position about 22-23 hours a day! I really cannot tolerate this anymore. I am moving towards taking the final decision and take my own life.

Any recommendations?

Thank you!

[M1013828]

How long has this been going on??

My wife is in a similar position from a pain perspective but has 2 levels toast at the ripe old age of 23, so we are looking at the A-Mav ball and socket, at L4-L5 and ALIF at L5-S1.. We like the M6, but it is not available in New Zealand, and the life span of the core may not stand the test of time for someone so young. Additionally multi level ADR is experimental here so we wouldnt get a double A-Mav funded.....

I would hunt down a surgeon known to do ADR and get his opinion. You may also be up against the view that the disc is not a cause of pain, as some "old school" specialists would be looking for the bulge to be compressing nerve roots, without that contact, they are probably shrugging there shoulders and leaving you to your own devices. My wife has only suffered for 2 years, but it is constantly getting worse, there is an emotional component, which has amplified things, but at the end of the day, I feel remove the pain generator, and the emotions will come right....

medications??? My wife is on 20mg Oxycontin morning and night, 2100mg of Gabapentin a day, 50mg of Nortriptylene, and it's still spiralling out of control, it also stuffs with your head. If you aren't on any, keep away from the opiates, they will make you more depressed, and tolerance sucks, (we called an ambulance for one flare up, and she barely felt 100mcg of fentanyl

Armchair Amateur Diagnostic opinions..........
how much disc height have you lost in that level? you may want to nip facet joint problems in the bud by fusing or ADR to restore disc height.
You would possibly want a Discography with the fluroscope thingymabob to assess how bad your disc tear and the working internals are (internal disc disruption) This is not viewable on MRI but google chirogeek fore more info.

Additionally there is a small chance some of the pain is caused by sacro illiac joint and facet joint issues, a diagnostic nerve block may cross these off your list, homing in on the elephant in the room.......
Discogenic pain is typically relatively non specific, there is "dermatome" maps that show where all the main nerves from the back go, and these are concordant with nerve root compressions, but referred disc pain is all over the place. My wife has various referred symptoms, heavy legs, numb patches, hot spots (heat lamps above the skin) etc through L4-S1, and when its bad even L3-S2 dermatomes, so the orthopaedics ignore her as it is "in her head" some of your sensations sound similar to hers.

If you have a persistent pain on the left, that may be an indicator that a facet joint is started to wear, if this is secondary, it can reverse slightly if you deal with the elephant in the room.

Dont give up- a one level fusion at your age and weight is acceptable, (you are at the halfway mark of your life, so long term risks are less than my wife's) but an ADR is better.

Keep off the opiates, and get some cash behind you for the surgery, if the M6-L looks like your thing, as it is for so many others, be prepared for a trip to europe, and amazing reversal of your fortunes!!

Kia Kaha (be strong)

[zocoma]

James,
I understand wanting to give up; I have been dealing with cervical cord compression for almost a year and getting ADR in 2 days When I found this group I didn't think I could stand another day of the pain, tears, fear, but pills and prayers have helped me survive. It's been so hard to stay positive and cheerful with my kids and husband. He understands spinal pain but they don't really understand an injury that doesn't show on the outside. This group does know and understand your pain. Please keep sharing and don't end your life. My sister killed herself almost 2 years ago partly due to medical issues; perhaps it did end her pain but her family has discovered suffering that doesn't end and now there is no chance for her to be well. Suicide is a permanent solution to temporary problems. There is help for disc pain. I will pray for you to get relief, good care, and hope SOON.
zocoma

[jss]

James,

Clearly your condition has taken a heavy toll on you. Condolences and welcome.

I can only imagine the frustration of not being able to get a diagnosis for the source of your pain; and if your only option is enduring another 35 years of incapacitating pain, I would never try and talk you out of suicide; but it sounds like you're being very hasty. I'm glad you stopped by here first.

Aside from the one imaging study, have you had any further diagnostics? ESI? Discogram? etc... It sounds like you have a particularly difficult case to diagnose. I know of two highly thought of spine surgeons in your area; one a neurosurgeon and one an orthopedic. Dr Luiz Pimenta is a world renowned spine researcher that is profusely cited by his peers, and is by all accounts an outstanding surgeon. Though domiciled in Sao Paulo, Brazil, he has been known to see patients in San Diego at UCSD where he is on the Board. You should be able to find out more about the possibilities of seeing him at UCSD by contacting his office in Brazil. The posters on this site that go by the handles Maddie and Sandy123 were both treated by him in Brazil. If you contact them, they would probably be happy to help you get in contact with him. Dr Rick Delmarter is a nationally renowned orthopedic research surgeon whose office is up the road in Santa Monica. His name has come across this site a number of times.

Please keep us posted, and good luck.

Jeff

[Cirobi]

James,

I'm glad you found these forums before choosing suicide to end your suffering. There are options out there. Unfortunately, the trick is finding the combination of doctors and tests to properly diagnose what's going on in your spine.

How long ago was your last MRI? If it was toward the beginning of your spine problems, perhaps a new one would show something different? Also, there are other tests that should be done that can help determine if it is disc related pain, such as the discogram Jeff mentioned. If you can muster up the strength mentally and emotionally to do so, please keep fighting for answers. You have a lot of life left to live and there are answers to our pain for many of us faulty spine sufferers. I can't give much in the way of regional suggestions as I'm an east coaster, but here's some food for thought. Hopefully it helps in some way.

I think some doctors put too much faith on evidence of disc height loss. While that is a major visible factor for many, it's not the only factor that a doctor should consider. To use myself as an example, I had a primary care doc look at an xray of my lumbar spine and tell me my issues were just arthritic in nature... mild arthritis he called it. My pain was definitely not mild considering I have a rather high tolerance for pain and had built up some of that tolerance thanks to my spine issues. When I got an MRI done, the hospital I went to described the herniations as mild there too. They must've missed the part where my spine herniated centrally and was putting pressure on the nerves. The surgeon I initially spoke with about getting injections saw what was going on better and sent me to a colleague of his for a surgical consult after having a discogram to determine which level was generating the pain. All this time, no loss of disc height, but pain levels that made me feel like I was completely crippled some days at the ripe ole age of 27.

It's worth it to keep fighting. When I got that initial diagnosis from a former primary care doctor of mine, part of me knew the diagnosis was not correct, especially after PT and the medications he prescribed weren't helping. Once I changed to a more open access health plan through work, I went hunting for answers. I will say that I did get lucky in many regards, but were the road not as easy, I know my fighting spirit would have demanded answers.

I can understand the emotional toll it takes though. I had dealt with my pain increasing bit by bit through a decade before my back essentially gave me the middle finger. There were days I was so depressed, I couldn't perform my job properly and it turned into me getting a warning and being put on a sort of probationary period at work. Not to mention, my significant other (who is now my husband) couldn't grapple with the severity of it and couldn't understand why I wasn't exercising regularly. It became the subject of many tear filled arguments. I didn't realize just how mentally and emotionally exhausting it had been until I was in recovery from my L5S1 ADR surgery four years ago. When I no longer felt the pressure and radiating pain, it was like a weight was lifted from my shoulders. My coworkers even saw the difference as soon as I came back to work after my medical leave. It's that sense of relief that keeps me coming back to these forums with the hope of helping others see their way toward resolution of their symptoms.

My suggestion to you is to explore these forums as thoroughly as you can. Look in the post-op section for individual stories that are most similar to you. Ask tons of questions as well. This corner of the internet has some amazingly helpful people and even if they can't give advice specific to your issue or directly answer your questions, they are full of encouraging words. Sometimes, just having a group of people cheering for you can make all the difference.

I hope you're able to find resolution to your pain and a way to cheer you up a bit so things don't seem quite as bleak.

~Sara

[james163ca]

Thank you for your response.

I am having this issue for the past 5 years. It started with a pain on the left side of my back and PT made it worse. I haven't been able to sit since then.
I am sorry for your wife. 23yo is really young. I switch to supervised exercise/PT since two years ago, which costs me $500+ per month. It doesn't help much with the pain, but it keeps your body and back muscles strong. I highly recommend that. Two years ago I was scared of even looking at gym equipment, I can do 40 pushups now.

In US, medical fields are an example of conflict of interest, IMO. Doctors want the money rather than thinking of what is best for the patient. If they can diagnose you within 15 minutes, perfect. Otherwise, you are out of luck. My case requires more attentions and doctors are not willing to do that.

I don't quit know how much of disc height I have lost. MRI reports say there is a height loss, but they do not say how much. I am certainly shorter than 5 year ago, as my height measurements shows.

I think you are right about the left side pain. It is from degenerated facet joints. The reason is that I get lot of pain bending and twisting to the left.
Looking at dermatome maps, it seems my burning sensations on the back of legs and buttocks comes from S1-S2, and on the bottom of my feet comes from L4-S1. I mentioned this to a Doc, and he basically said he has studied dermatome maps for 20 years and I better shut up lol

I really don't know what to do. Life is precisions and I am not depressed, but I don't want to live like a prisoner (I haven’t traveled more than 15 miles of my home during the last 5 years).

[Harrison]

http://www.adrsupport.org/forums/f51...signals-11631/ thx Slack, for posting that.

James, has your PCP been helpful in getting other opinions? It sounds like you tried that already. I know that some people within this community had excruciating (and undiagnosed) pain with even small annular tears.

Have you tried different kinds of anti-inflammatories (non-narcotic)? Some people find that certain ones can be more effective than others...

[james163ca]

Jeff,

Thank you for your response.
I will checkout surgeons you mentioned.

[james163ca]

Sara,

Thanks for your reply.

So far no one clearly knows whats wrong with my back. Three years ago Dr. Akbania, opened his office window, pointed to the people walking around and said "the MRI of 40% of these people is like yours, but they don't have pain". At the same time Dr. Howard Tung spend 15 minutes explaining to me how he is going to use PEEK to fuse my back.

Sometimes I take narcotic medicine, which largely stops the pain and lets me sleep well and life becomes so pleasant.

[james163ca]

Zocoma,

I don't rush to anything. But I don't plan to live in pain. It is not worth it. You are right, people don't have a clue that you have pain when your injury does not show on the outside. I clearly show a a healthy individual. Yet, I cannot move and people having hard time believing it, doctors and medical stuff included.

I almost run into argument with an eye doctor who could not accept that I cannot sit!