The online Community for people with spinal cord injury, their relatives and friends

  1. neilvdm_old
  2. {ed-badge-title-trailblazer}
  3. Archive Ask the Doctor
  4. Tuesday, 05 May 2015
Hi,I'm now going on to 5 months post my SCI. Maybe I'm just impatient but I need to get some advise. Here comes my story...
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
Accepted Answer Pending Moderation
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
  1. more than a month ago
  2. Archive Ask the Doctor
  3. # 1
Accepted Answer Pending Moderation
Thank you Dr. Hans for your reply.I am due to go for another X-ray and MRI. Once I have done so, I am getting all my records from the hospital, then if you would like, I can always send what you want to have a look at.
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
  1. more than a month ago
  2. Archive Ask the Doctor
  3. # 2
Accepted Answer Pending Moderation
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
  1. more than a month ago
  2. Archive Ask the Doctor
  3. # 3
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