neuro hell

[Ragersilver]

I was taking serotonin tablets until they gave me the runs but I got great relief from my neuro pain from them it was amazing, then I read you can buy the cream but I could not find it.
I now make my own by crushing up finely and mixing 1/4 of a tablet with 250ml of aqueous soap free cream and just rub a little bit into the palm of my hands 3 times a week just before bed, it helps my neuro pain and also my prostate pain and also gives you an amazing nights sleep.
This bypasses the gut and will not cause the runs like the tablets do, I am not condoning that you should do what I do but it works for me and I don't care what health professionals say about what I am doing they are not the ones in agony...................

[Ragersilver]

Also get a Vitamin D blood test done as mine was low and i found that if your Vitamin d is low it adds to your neuro pain,it would not hurt to take vitamin D everyday anyway as it is also good for bone health which is lacking in most SCI patients.............

[Freespin 71]

Hello went from the east coast to the desert of Nevada , some of the joint pain has been better , having a none union tho is still a killer on any rough surface. . "ie"sideways riding in a car , even just hitting a bump with my smart drive causes pain..
The never pain is worse here I feel do to its a 100 degrees here , thermal regulator doesn't work , so they over heated feeling adds to the burning hell...
Upped my Gabapentin by 400 MG HATE brain fog...no significant change in pain , spending alot if my time laying down , this fucking bullshit sucks , so sick of this..
Feel my neuro surgeon gave up on me , nice how doctors can just walk away leaving me with a major problem.. no fusion , means no quality of life.. everything causes pain to do.. now that I've had my second surgery in 4 years I'm kinda doubting I'm going to be able to find a Dr. To help me .. it's a toss up on what's worse at times , dealing with this or the frustrating politics of Dr.s. and their egos ,,
Never believe what A doctor may say , always seek out they answers for yourself.. hard to find a doctor who won't bullshit you in they end when you reach his or her level of expertise. .

[Freespin 71]

As for vitamin D ,,,, FOOD GRADE DIATOMACEOUS EARTH is 85 % silica converts back to vitamin D the best with in the body.. has many many good properties for the body..
Will help with uti's
Will help lower cholesterol level by 40 to 60 points
Will help clean out the colon
Will kills pest in the digestive system.
Also known to boost energy levels.
Check it out ... must be food grade diatomaceous earth. .

[alan]

Dutchman,

My fusion hardware was removed in 1987, the MRIs could not see my spinal cord because of those metal wires. So, my neurosurgeon at the time recommended doing a laminectomy of C-5 so he could take a look at my damaged cord, and see if if he saw a syrinx (he did not.) I've had no problems without the hardware, and MRIs are able to see my damaged area with no problem.

[DaDutchman]

Alan,

Thank you for telling me you had your hardware removed. Knowing that you had no ill side effects after removal makes me feel good. I had read that the hardware is there primarily to hold everything in place until the fusions took hold. How long was the recovery, if there was any such thing?

Thanks,

DaDutchman

[alan]

Not long. I don't recall the exact length of time. I think staples (used instead of stitches) were in my neck for about two weeks before they were removed.

The Dr. said my fusion would remain strong, even without the wires, as all the bones from C-4 to C-6 had grown together, as they were supposed to do.

[Freespin 71]

Question . Since I have a none union , what can be done post surgically. .
I and anteriorly wedge at t11 t12 , had revision of insturmentation last yr , it did not work , there is no fusion..
I now have insturmentation from t10 thru L2 ..
I feel since there is no fusion in place that the new hardware is further putting stress on the rest of my spinal column , and I'm still at great risk for further nerve damage ,do to instability of the spine.
My question is can a Dr. Go post surgically and further graph more boney material in place posteriorly..
I would say my t11 is 2/3 over t12 and sitting on about a 1/3 of t12..
Need help bad..

[SCI-Nurse]

I'm jumping in here

you have a difficult situation going on and I'm sorry for one because it does suck. I've helped people to the best of my ability to get the specialists they need for pain and its is frustrating for everyone.

Have you ever been to see an interdisciplinary pain clinic team that knows about spinal cord issues?
they have a physiatrist or a pain specialist physician, psychologist, pharmacist and anesthesiologist and a case manager on the team

when your pain becomes complicated you need a consultation

pbr

[Freespin 71]

Sci-Nurse ..Thank you for your response. .
To answer your questions let me explain some more about myself.
I am a 44 year old single male homeowner on a fixed salary. .
My spinal cord injury was a bad break with a not well thought out intial first surgery..
Since then I had 8 good years until underlying issues started to arise .. first it was a syrinx from t12 thru t7 ..
Had shunting of the cyst and untethering surgery. ..
Two years later I had revision of insturmentation from t10 thru L2 , intially I was had instrumentation in t11 t12..
I was told when newly injured that I would need a surgery within 10 years. Will like any Newby I had no idea what they were talking about...and my focus was on my newly paralyzed body and wife...i'm not divorced..

My injury is t11 t12 I and anteriorly wedge at t12 and posteriorly repulsed by about and inch..
From and xray it's easy to spot that t11 and t12 have been grinding on each other..
So now that I have new insturmentation from t10 to L2 with a none union , there currently is no stability of my spinal column and I am hinged on the new hardware same as before , although perhaps to a worse effect due to increase stress being imposed on the upper and lower spinal column. .
As you know without a solid fusion everything I do is going to cause pain.. every bump , every vibration is a constant irritation. .
With this being said I'm reluctant to go down that road of pain management because that is not going to solve anything , by further masking the pain comes with a cost and the cost is missing out on more life..
I've never done well with pain meds , they make me feel horrible and only mask pain by 20 % if I'm lucky..
I do understand it is a balance between relief and side effects ..
I personally keep my meds to what gives me a good night sleep and do what I can during the day to be active within reason , try not to over do things.. but this is difficult when everything causes pain..
I don't see how more medication is going to help this..

Nurse case management. . Hmm how to sum this up ..
I've had nurse case management in the past...
What I've learned over the 12 years post injury is its best to be your own best advocate. .
It's my job to read all reports and understand what they say in there entirety .. if I don't know what's going on in my own body , what intelligent question could I ask the physician who is seeing me , where is be orthopedic or neuro surgeon..
I do apologize but what you are asking me to do is give up and I will never concede to the idea that letting someone else management my life or rely on a pain med to further mask these problems are not they answer and only will lead to more problems..
Whether I have spinal cord issues or not I have everyday life issues to manage as well .. if medication fogs me out and gives me bad decision making skills , then it's not practical for my future..
My pain is this bad now , what's it going to be like in 1 , 2 , 5 or more years.. I'm a young guy at 44 , I feel if I don't find a Dr. With the talent to fix this I'm just going to further miss out on life..
Would I ever expect to not be in pain.. NO unfortunately it's part of my life .. but I would like to get back to training and trying and they only way that is going to happen is thru surgery to correct t12 , by either removing it and putting in a spacer and anteriorly caging ..or if there is another way posteriorly to stabilize what is there...
It's come down to WHO can pull this off without doing further damage to the spinal cord and tenuous nerve connection. .
If you have a list of surgeons you feel who can do this it would be greatly appreciated. .
As you know getting thru healthcare can be like getting thru a mine field...

[Freespin 71]

What I've learned is if I add more physicians and more decision making people in my spinal cord health the more politics , and associated problems I encounter...
I hear and see people with pain pumps and over medicated by physicians all the time , and these people are in no less pain then I am...
When you see people who have n been dealing with severe chronic pain who have gone the pain med route and they come back and say all they did was waste more life away ..I PAY ATTENTION to what they are saying...
I get that it is a balance of meds , relief and living life.

I have not seen they evidence of benefits of over medicating yourself by going to pain management or having a nurse case manager, manage your healthcare needs..
These nurse case managers work for they insurance company not the patient , from what I have experienced all a nurse case management once to do is string you alone over medicate you and keep you quiet. .
More like worse case management. .
I'm sorry but I completely disagree with what you are asking ,,respectfully...

[SCI-Nurse]

Well thanks for the clarification and I appreciate the time your took to type it all out.
I'm not sure where you live and I'm not sure if you need an orthopedic spine surgeon or a neurosurgeon.

At Craig Hospital in Denver Dr Falci is the neurosurgeon there and he is internationally known.

From your post it appears that you have pinpointed the pain that is associated as T11-12 grinding on each other. The syrinx shunting and the untethering can reduce pain but it is a 50% or less success of that. An expert consultation with a neurosurgeon can tell you what can and can't be done.

I understand that you don't want to deal with pain medications making you drowsy. Pain medication management is not an exact science; patients feel like guinea pigs with trying different types of medications, different doses, and they take a long time before you reach therapeutic doses to see if they are effective. It is a quality of life issue for sure and chronic pain sucks.

pbr

[Freespin 71]

Img_20140...08259.jpg see if this uploads

[SCI-Nurse]

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(KLD)

[arndog]

FreeSpin - I am going to suggest going to Dr. Sig Benvin at UCSF , This guy is a Ortho spine surgeon who is incredible and unafraid of any challenge. I owe him a lot when he took out all my hardware from T11 to L5 and fused me from L11 to the pelvis.
I don't know where you live, but I can vouch for this Spine surgeon. The nociceptive is gone - I 'just' have the daily neuropathic pain.
I hope that helps you.