Re: Re: Update on my daughter's appt w/local MD....now Medical Cannabis..

[Guest guest]

, I know I dont have to say this but being on a public list I guess I

should...I do not condone using cannabis in non-medical states and especially

with children as if it is not prescribed by a physician it could be construed as

child abuse and CPS could step in for prosecution so of course if it ever came

to you wanting your son to have that option it would be imperative to be in a

medical state. (Sorry, I'm sure that goes without saying....guess after being a

nurse for 16 years I learned to CYA ha ha) I understand that you are just

collecting information to help him in the future and have no imediate plans for

this and I think that is AWESOME that you are helping him in that way!! One of

the most frustrating things ever is to be hurting so badly and having to do all

the research and fighting docs and teaching docs etc etc, he is lucky to have

you to do that for him    Many Blessings, 

________________________________

To: tetheredspinalcord

Sent: Wed, March 30, 2011 1:02:26 PM

Subject: Re: Re: Update on my daughter's appt w/local MD....now Medical

Cannabis

 

You are very welcome , I hope they give your son something to help his

pain. Ibuprofen does nothing for nerve pain. It helps a little with muscle aches

but thats about it and its bad for the liver and stomach. Your son is so young

to be in so much pain! I'm so sorry. As someone who deals with nerve pain daily

I sympathize greatly. Unfortunately the state I am in is not a medical cannabis

state so I am in the process of moving to one that is. I do not want to alarm

you (I'm sure this wont be the first you've heard this though) but I can tell

you first hand that this unrelenting nerve pain " can " lead one to suicidal

thoughts. Before this last surgery I was researching states and countries with

physician assisted suicide programs so that my family could be involved and not

just left in devastation from coming in and finding me. Fortunately for me, this

last surgery helped a bit...enough to allow me to continue my search for

something else to help me. I found medical cannabis, and for me, it has been a

life saver. I cannot tell you how many times I have thanked God for how old I

am...in other words, my truly intense pain didnt start until age 36, I am now

47, I didnt have to suffer with the intense pain from a young age and I am SO

grateful. I honestly cannot imagine it. So please, do everything you can to give

your son as much comfort as possible. It just isnt possible (at this time) to

alleviate all the pain but even a degree or two helps tremendously. I am not

advising here but I do want you to be aware that medical cannabis has been used

with children with seizures and autism so if you feel that the pharmaceuticals

are not serving your son, try something different. Bless you both,

________________________________

To: tetheredspinalcord

Sent: Tue, March 29, 2011 2:18:11 AM

Subject: Re: Re: Update on my daughter's appt w/local MD....now Medical

Cannabis

*,*

**

*I just want to thank you for telling me about medical cannabis. I am making

a folder of ALL the possible pain medications and their pros and cons. I am

making this folder for when my son is a grown man and will most likely have

chronic pain.  He is only 10 right now, but he has a tethered cord which

cannot be detethered all the way due to the fact that it is was severely

intertwined in a lipoma with a bunch of live nerve roots. His neuro that

detethered him when he was 5 yrs. old said it was the worst case of TC he

had ever seen and that he simply could not safely detether him wothout my

son losing major loss of functions, including walking. I also had the same

second opinion by Dr. Fuchs at Duke. They both said if the pain got

unbearable, they could " try and debulk him again, and relieve a little

pressure but not detether all the way " . My son also has a 4mm Chiari.*

**

*Anyway, my son already suffers from mild to moderate pain on a daily basis.

I am already seeing an increase in his pain levels in his legs, knees, feet,

and back as he is growing taller. right now his pain is relieved with

Ibuprofen, and he has a prescription for tylenol with codeine. There have

been a couple times recently where those meds will not relieve his pain at

all, and he just cries in agony. I have a feeling that my son is going to

have a lifetime of chronic nerve pain, as many of  the adults do that I read

about on this site.*

**

*I asked his neurosurgeons nurse on the phone, and pediatrician for

something specifically for nerve pain, and they both said all he could take

is ibuprofen.  He is scheduled to have an MRI on April 7th to see if his

Chiari is worse , or he has developed a syrinx, and to look at the TC to see

if that is why his pain is increasing. I am going to ask his neuro again (

in person) when we go in for the results about meds for children with nerve

pain.*

**

*I am NOT going to ask about medical cannabis for my child.  I am just

thanking you for letting me know that is an option maybe to be considered

when my son is a grown man, if nothing else is working, or if years of

traditional pain meds have damaged his kidneys or liver. *

**

*

*

On Tue, Mar 29, 2011 at 1:10 AM, wrote:

>

>

> This is a typical response from a doc who doesnt work with medical

> cannabis.

> Most pain patients use vaporizers, elixers or edibles to negate the effects

> of

> smoking (not all, there are people that just like to smoke) As for helping

> with

> our type of nerve pain, it has helped many people with MS nerve pain,

> Fibromyalgia nerve pain, ALS nerve pain, neuropathy, traumatic brain injury

>

> nerve pain and most importantly SCI nerve pain so again...typical response

> from

> a doc that relies on pharmaceutical reps to tell him what works for people

> and

> has stereotypical ideas of marijuana. Just as there are misconceptions

> about

> pain patients and narcotics there is even more surrounding cannabis. It is

> true

> that it doesnt totally take the pain " away " , nothing does...but people

> report

> that it puts a space between them and the pain, enough to function in a

> comfortable way (not to mention relief from muscle spasms, its

> anti-inflamatory

> properties and actually being able to sleep at night which makes a HUGE

> difference in pain levels). Many patients have been able to return to work

> and

> to the activities they love after years of incapacitating pain. They

> describe it

> as being an observer of the pain, they know the pain is there but it isnt

> all

> consuming and no longer limits their ability to perform physically. As

> Kathy

> stated about narcotics, those who have been stabilized on it claim that it

> doesnt even affect their cognitive skills in fact one fellow has been a

> successful stock broker for over 20 years handling millions of dollars in

> investments. Personally, I will still say there are positions best left to

> the

> unmedicated, whether it be narcotics or medical cannabis, but that is my

> own

> personal opinion.

> I am not saying it is the right thing for everyone but tens of thousands of

>

> people have gotten their lives back using it responsibly so please dont

> dismiss

> it so easily. It is serious medicine. My friend is going through

> chemotherapy

> right now for breast cancer, she also has crohns and fibromyalgia. You

> cannot

> even imagine how sick this has made her. It is the only thing that helps

> her,

> the only thing. It is the only thing that stops the vomiting, helps the

> pain,

> allows her to eat etc etc. It is a DAMN SHAME and a human rights violation

> as

> far as I'm concerned for our government to tell a dying woman that she can

> have

> all the damn heart rate/respiratory rate/bowel motility slowing,

> liver/kidney

> damaging drugs that she wants but if she uses the one thing that gives her

> a

> moment of relief or allows her to eat one morsal of food without puking she

> can

> go to jail? It is inhumane. God forbid that someone could grow their own

> medicine and not have to pay hundreds of dollars for their meds every

> month,

> then add another hundred for meds to counteract the side effects of the

> first

> meds. I call BS.   

>

> ________________________________

>

> To: tetheredspinalcord

> Sent: Mon, March 28, 2011 2:52:40 PM

> Subject: Re: Update on my daughter's appt w/local MD....

>

>

>

> Regarding medical marijuana: my sister (a nurse) joked about asking the Dr.

>

> about it. So I did. He said " it wouldn't help the type of nerve pain you

> have

> and the secondary effects (smoking) would only cause other medical

> problems " . He

>

> didn't say it but lung cancer, perhaps?

>

> Jodi

>

>