I'm new to this website, so please let me know if I did not post this correctly.


I am adding this topic for my Dad (he turned 75 this past January) who is pretty computer illiterate. We (his family) have set up an email account for my Mom to access (address below) and I will be checking back to this great site frequently!


Here is what my Dad has to say/ask.


HELP! HELP! HELP! HELP! HELP! HELP HELP!

I need your help desperately.

Seven years ago I fell off a deck a distance of three feet and bruised my spinal cord. After all was said and done, I lost the use of both my legs, my hands and my arms also the use of control of my body temperature. Just about all of my body functions also. One of the most crushing things is I fouled up my nervous system in my whole body. Over the past seven years I also had problems with my entire nervous system. I started an incredible itch on my head, neck, shoulders and face which has traveled down my body, this is getting worse as the years go by. I am to the point now where the itching is up to an 8 or 9 on a pain scale of 10. My wife scratches my head ferociously and that helps a little. Ice packs also help a little. The itch is over my complete scalp, my face and is going down into my neck. The skin of my scalp and face is clear, there are no signs of any sores or skin breaks.

I have gone to a neurosurgeon, two neurologists, two skin specialists, a naturopath and most recently four treatments of acupuncture and even a hypnotist all have said they cannot help me. Nothing has helped me. I contacted the Christopher Reeve foundation and the Miami Project in Florida. They told me the same as everyone else, there is nothing they can do for me. I do not know where to go or what to do next.

The pain from the itching is debilitating. It wakes me out of a sound sleep and is now almost constant.

I am asking, no pleading, with anyone who has a similar injury to contact me by e-mail and what you are doing for relief. I am beside myself and can’t stand this anymore. Please contact me if you have any ideas, no matter how slight. Thank you.

Larry
spinalhelp@aol.com

We (his family) are pretty sure that his itch is not caused by a reaction to medication ... however, he has been on so many different meds over the past seven years, that it could be a possibility. He also had a baclofin pump put in almost six years ago.

What I have to say may not be of any help, as you say this is a long term problem, and what I describe, would really only affect someone who has recently started itching. It may be of use to someone else though who has a similar problem.

I have a Baclofen pump, and the only time I get an itchy head, or area above my injury is when the pump runs out.

Itchy skin can be a symptom of Baclofen withdrawal.

When did he last get it refilled, have his spasms increased?

It may be worth getting the pump checked out, because if it's six years old, and it's a Medtronic pump, he may be getting towards the end of it's battery life, meaning it may not be delivering the Baclofen accuratly.

Best regards

Simon

Simon -- I'm sitting here with my with my Mom and Dad and have just read your reply -- thank you for replying. My Dad is on a schedule to have his pump refilled every three months (faithfully). His doctor withdraws all of the old medication from the sugically implated pump and then it is refilled. We will mention your response to my Dad's nurse and many of his doctors.

I will keep you posted as to the reponse(s).

Thanks again,
MaurysMom (Kathy)

Many thanks Simon for that tidbit on Baclofen withdrawal.

We did not know about it , was not written in any Baclofen prospect that I have read ,but it would explain Kevin's itch above the injury level since he's decreased the Baclofen from 160 mg to 90 mg daily post treatment in China.

Larry ,what helped with Kevin's itch was a baby cream called Bepanthen produced by Bayer . A small amount goes a long way.
Perhaps you could ask your Dr if he recomends that you try and is not expensive either (only about 7 $ in Australia.)

Since my last cord surgery, and resulting paralysis, I've had a maddening itch between my shoulder blades (right in that spot that's hard to reach!), but nothing compared to what Larry is experiencing. Scratching the area does not satisfy the itch because it seems to be under the skin.

I'm wondering if a TENS unit would help? I suppose it would be difficult to cover such a large area, but maybe you could cover small areas at a time. The electrical stimulation provided might distract the nerves enough to disrupt that loop, even if just temporarily.

I hope a solution is found....don't give up!

Up until about 10 years ago, itch was thought of as a "minor" pain. However in the last decade, there have been 2 new types of itch nerves discovered. One type nerve that serves the familiar sensations that are related to histamine. These are the familiar itches that we get when were exposed to noxious chemicals or plants such as poison ivy. These type of itches usually respond to Benadryl.

Another type of nerves fiber associated with itches is called the pathological/cowhage itch fiber. At least in some people this itch responds to Capsaicin cream.

This new nerve fiber appears to be able to respond to prickling a fine hairs, such as certain wool garments. It also seems to be able to detect painful stimuli such as a burn or a hard poke.

Cowage is a tropical plant Mucuna Prurians which produces seed pods covered in spicules. The spicules are sold in novelty stores as itch powder. These spicules produce a consistent and reliable itch for about six minutes which is blocked by capsaicin.

You might want to try capsaicin cream, it is available over the counter in pharmacies and supermarkets. it does cause an unpleasant heating sensation when it is first put on. It is derived from hot peppers. To get the full effect you may have to apply it multiple times during the day. Of course alternating between Benadryl and capsaicin may be useful also. Benadryl also has a mild local anesthetic effect to the skin.

There is more and more information about chronic itch coming out. I've recently seems articles where spinal cord stimulator successfully treated neuropathic pain but brought on an intense itch that was worse than the original pain. I'm also seeing reports that using opiate narcotics for chronic malignant and nonmalignant pain can cause the same.

Keep me informed of how things are going.

david@teicheira.com

I also have very bad itching across and between my shoulders, just as you describe. Although having it scratched feels good, it doesn't relieve it as its under the skin. My carer can scratch the spot, but the itch just moves.

I've noticed its more pronounced when I'm stressed. Mine may be due to the damaged nerve endings or even psycological. I use a cream called Betnovate to ease it.

Maurysmom, I hope your dad soon finds out what's causing his itch; mine's nothing compared to what he's going through.

Good luck.