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December I had a motocross injury and fractured my spine in 2 places, T6 & T8.I was discharged beginning February. Just before that I started complaining about burning sensation on my left arm, this later I found out is neropathic pain. In the last 2 months it has spread and gotten a lot worse, this all was above my injury, now my lower back has an even stringer burning pain, plus more when i move, i feel like a "raw" pain(sorry, best way I can describe it)I have mentioned this pain to the neuro specialist which I had to wait for 2 months for to see and he just past me on the the pain management clinic, which I'm also waiting for 3 weeks till I can see them. My skin is so sensitive at the moment, that I can hardly play with my 2 year old son ( he loves hugging and grabbing you). When I allow him to do it, it feels like Im being shocked, ;ike a sensory overload. And this is the part thats killing me, not being in a wheelchair, but the pain the stopping me to play with my son. It brings tears to my eyes just typing this.
I feel the doctors here (Qatar) are just doing reactive doctoring, what I mean by that is that ... e.g. I fracture my spine, they react by adding a support to my spine. Now when I go see them its like oh, the scar healed nicely, this is the MRI of 2 months back. Ok, come see me again in 3 month.
Really?? this is not the same as breaking an arm or something!
Surely there should be more to that? Shouldn't there be like ok, "this is the other possibilities" or "if you have this and that concerns, then this is what we can do"I'm I just a newbie still and expecting too much? Should I just man up wait for time to pass and hope it all gets better?
The reason why I'm posting here is I want to know if I should get a second opinion? What is a good SCI Center to contact?
Thanks for reading my post...Neil
Dear Neil,
Your assessment of the situation is correct, this is neuropathic pain. A lot of spinal injured patients are suffering from pain, mainly neuropathic pain.
“Neuropathic” means: it is pain that is generated by the nervous system itself. You feel burning or electrifying pain even when there is no fire or electricity. You feel the pain at parts of the body that are fully normal. You even feel pain when there is only light touch. This is called “hyperesthesia” and is common in combination with neuropathic pain.
The origin of this phenomenon is (as far as we know today) the process of forming a scar in the spinal cord (or in the nervous system generally) but the pathomechanism of this pain is not fully understood yet.
There are many reasons why neuropathic pain arises. Without knowing your clinical details as well as the local situation at the site of the injury of the spinal cord (visible in MRI and/or CT-scans) it is extremely difficult to give valuable advice. The MRI is often disturbed by metallic implants at the site of the vertebral fracture.
Primarily the cause that is responsible for the neuropathic pain should be identified and eliminated (if possible). If not, there are various steps of treatment, in complex cases we also rely on the help of our colleagues from the pain clinic. You will have to endure many questions and eventually fill in questionnaires of the doctors before they will give a suggestion of treatment.
It is difficult to give reliable advice without knowing what kind of treatment you get at the moment and what you have tested already.
There are many treatment options from physical therapy to massage and relaxation therapy, acupuncture, electrostimulation etc. to pharmacological treatment consisting of various groups of medicaments. Painkillers from non-steroidal anti-inflammatory drugs to opiates, antiepileptic drugs and also antidepressants are often used, sometimes in combination. Often multiple medication has to be tested. It is difficult to find the individual dosage and one cannot argue that the medicament has no effect before the maximum dosage has been tested despite of side effects.
Finally there are intrathecal (directly to the spinal cord) application forms of certain drugs (by implantable drug delivery systems) and neurosurgical operations to control neuropathic pain. These invasive forms of treatment are excluded for people who are less than 12-18 months from spinal cord injury.
What is a good SCI centre to contact?
On our website we provide a global map of SCI centres: https://www.paraforum.ch/rehab-map/rehab-map.jsf. Unfortunately the part of the Arab Peninsula is mostly empty. You would be forced to contact a spinal rehabilitation centre in Europe, in Northern America or India.
I hope this will be helpful for your oncoming decisions!
Yours sincerely
Dr._Hans, 6.5.2015
I have looked at the map, but there is so many, I dont know where to start.I know there is a lack pf specialized SCI centers in the middle east and this was what I was looking at .. Europe or India, but i dont know which centers as there are so many
Regards,Neil
Dear Neil!
There are many reasons that are influencing the choice of a Spinal Injury Rehabilitation Centre. I have seen many of them around the world and I know also some of the colleagues who are working there.
Communication
If you are speaking English you possibly choose a centre in an English speaking country so that you are able to communicate with the staff.
Mentality
You will have to choose a centre in a country you will be able to understand their way of life and mindset. Life and culture can be very different from Arab customs. Ask if they have experience with people from abroad.
Food
For special food you will have to ask if special menus is available. Otherwise you possibly will be bored with the food from the hospital or will be forced to eat hamburgers and pizzas all the time.
Facility
Not all health systems and hospitals have the same possibilities in diagnosis and treatment. Usually it is better to choose a university hospital where all possible services are available.
Costs
Usually you will have to have an insurance that covers any treatment in foreign countries. In Switzerland you will have to pay in advance (deposit on a Swiss bank). In other countries I do not know exactly. Prices will be very different from Europe (Germany, Switzerland) (very expensive) UK, France, (expensive) to America (USA, Canada) (also expensive) or India (moderate costs). Ask about the costs and the modalities of payment.
These are only a few aspects of choice. Please look at the different websites of the hospitals you would like to go to. I am not allowed to recommend a clinic but if you choose three or four, I will tell you where I would prefer to go.
Yours sincerely
Dr._Hans, 7.5.2015
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