Any advice to combat TPBI pain

[marieke]

As I mentioned before "Low doses of Tricyclic antidepressants" help. Nortryptaline and Amytripltaline are both from this family of antidepressants.

Marieke 33, LOBPI
RN

[Bruce]

Hi Marieke thank you for the advice. I am currently using Lamictin but it gives me very little relieve. Nortryptaline has been discontinued in South Africa. I will try Amytriptalline and let you know how it works for me.

[marieke]

Good luck Bruce!

I have a spinal cord injury unrelated to my LOBPI (Yes, I was unlucky twice!). I take Nortryptaline and Lyrica and it doesn't completely get rid of the pain. Lately I have had way more burning pain.. could be the weather, stress, fatigue..? Whatever it is I wish it would go away. The meds help some, which is why I take'em, but as you know nothing seems to work completely.

Let us know how you get on.

Marieke 33 LOBPI
RN

[swhite1]

Hi. Talk to Janelle about the Spinal Cord Stimulator.
She is seriously considering amputation as well.
Scott

[Janelle54]

Hi Bruce,

I’m giving you a brief breakdown of my current situation. I take Lyrica, Baclofen, Tyzanidine, Methadone, & Dilaudid (as needed). I had an auto accident 1/2/07. My left arm has no feeling or movement from the elbow down. Of course, when I say no feeling that has to exclude pain that I have plenty of.

I had a nerve graft in July 07 that procedure failed. They attempted to do a Spinal Cord Stimulation in June 08. That failed because I have Spinal Cord Stenosis. Sept 11, 08 I had Motor Cortex Stimulation. That procedure has made a difference in the amount of pain I have. I know I sound vague with this statement. Let me explain. The device was adjusted 9/28/08. This made a huge difference with my pain. I was experiencing severe pain from my wrist through my fingers. After the adjustment, the pain decreased.

I had Muscle Transfers on 10/07/08. This procedure was also a failure. However, my nerve endings in my shoulder and arm became very irritated. This caused a different feeling type of severe pain. It was similar to the pain I had before but not exactly. I’m doing better now. The pain has lessened again. I still experience severe pain in the evening. It is believed it is caused by my arm straining my shoulder all day.

I’m having my arm amputated 11/21/08. There is no chance of my regaining movement in my arm. The amputation will lessen the strain my shoulder has. I believe I will have a lot less pain and spasms after the amputation. It will be done just above the elbow. I am not a good candidate for a prosthesis.

I actually can’t wait for the 21st to get here. It means I will finally be on the true road to recovery from the accident. Everything I have been going through was to save a dead arm. The surgeries, procedures, therapies, etc were all to save an arm that can't be saved. I believe Motor Cortex Stimulation will be a tremendous asset in relieving the pain my injury created. I expect to be working toward getting off all the drugs I take. I don’t know whether the Motor Cortex Stimulation will eventually be removed but I do know it is a positive way of reducing the pain BPI creates.

Good luck with all you do to recover from your injury.

Janelle

[Bruce]

Hi Janelle thank you for you’re explanation about the Motor Cortex Stimulation. I find it interesting. It might be an avenue to follow should my DREZ lesion not be successful. I have my arm in an immobilizer sling made out of plastic which I have specially made by an orthotist so my arm is not hanging on the side therefore it does not bother me. I feel more whole than having a stump for an arm. It is looks like prosthesis and also protects the arm against injury. People often think I have a broken arm. Good luck with the amputation.

[Bruce]

Just an update on my second DREZ (Dorsal Root Entry Zone) Lesion operation I had in December 2008. The operation was not successful and my neurosurgeon attempted a third DREZ lower down the spine cord which was also unsuccessful. Although I expected a very low success rate I was still very disappointed. See the link of my doctor and his explanation of a DREZ http://www.neurosurgery.co.za/pain.html. I am now seeing a hypnotherapist to help me managing the pain better. So far he helped me getting out of the disappointment state and made me concentrating on the positive. It is working and the hypno exercises definitely helps. I am also willing to become a guinea pig for any new human trials to combat the pain or anything new on the market that works with little side effects. So keep in contact and good luck to those struggling with the pain. The DREZ lesion although very invasive seems to be the best solution to combat the pain especially if your injury is relatively new and there is some finality that the arm will never become usable again.

[alurivinay]

Really sad news to hear that DERZ is not working. I was thinking of getting it done. Any idead how much it costs without insurance

[peterabb]

Bruce,
I am sorry to hear the DREZ was unsuccessful.
The pain sucks. I find it hard to believe in this day and age there is not something more effective out there to treat this pain. I sometimes feel as if there is more that can be done, but since this injury is uncommon no one gives a shit, to be honest.