11 replies to this topic

[russ1]

I've had the test dose and I'm pretty sure that in terms of what it can do the pump is the way to go and it'd be great to get off all these anti spasmodic drugs. I understand how it works and all about going in for refills every 3 months and pump replacements every 7 years but the thing no one has been able to tell me as yet is what having the pump in place under your skin is really like.

The things I want to know are

How visable is the bulk of the pump I'm not waif like but nor am I overweight - does the pump stick out like a sore thumb (anyone know of any photo's available of one implanted undre the skin)? Does it show under clothing?

Is there an issue of needing to be careful that the pum doesn't get knocked about in sport or sex or simply when getting dressed? I'm pretty active and having a pump that one needs to be caeful about would be a real pain

What are the downsides on a purely day to day basis or is it really a fit and forget item?

[Apparelyzed]

Hi Russ,

The pump will stick out a little, maybe 1cm, and therefor, if you are wearing tight fitting clothes, say a tucked in T-Shirt, then you can see it.

Generally, the only problem I have with mine is when I pull up to a table, as it can catch the table edge.

Once you're all healed up, it should be fine with regards to sex and active sports. The only down side of the pump regarding sex is that it may affect your erection, but this varies person to person.

I presume you're having the Medtronic?

I've had 2 or three of those, but as my spasticity has now stabalised, I had a Codman gas powered pump fitted last time, which will not need replacing again, and has a 3 month drug resevoire.


Any questions, just ask.

Simon

[knowthill]

russ1, on Jul 3 2008, 08:34 AM, said:

The things I want to know are

How visable is the bulk of the pump I'm not waif like but nor am I overweight - does the pump stick out like a sore thumb (anyone know of any photo's available of one implanted undre the skin)? Does it show under clothing?

Mine is visible and about the size of a hockey puck maybe just a bit smaller. It is not noticeable under my shirts at all. I do wear a husky type shirt instead of the tailored shirts I used to wear.

Quote

Is there an issue of needing to be careful that the pum doesn't get knocked about in sport or sex or simply when getting dressed? I'm pretty active and having a pump that one needs to be caeful about would be a real pain

I had problem with the first pump I received it worked its way out of my body in about 3 months. The surgeon placed to close to the outside layer of my skin. Now don’t get me wrong this was a fluke and very rare occurrence just what you to be aware of some of the unlucky possibilities. As far as sex and sports I am a T9/6 and they put the pump right on my line so I can not feel the bottom of the pump but can feel the top. I know I hear you saying bull shit but true they could not have done this if they had tried. Anyway when the pump gets hit I do feel a slight sting not enough to bring me down, just enough to let me know it is there.

Quote

What are the downsides on a purely day to day basis or is it really a fit and forget item?

Nothing, it is truly a God send in my case. My spasms were so bad before I could not stay in my chair. My legs would jerk at times and flip me over backwards; I broke my leg not even knowing it, and had to stay in bed most of the day. Now I live a better life.

[benok]

allow me to post too,
what does it mean when the pump is suppose to be placed intrathecal?
is it a major surgery when the pump is placed as an implant?

is it placed superficially beneath the skin?

[Motor]

benok, on Jul 5 2008, 04:00 AM, said:

allow me to post too,
what does it mean when the pump is suppose to be placed intrathecal?
is it a major surgery when the pump is placed as an implant?

is it placed superficially beneath the skin?

Hey guys I have a ITB pump and swear by it. Its the size of a hockey puck and protrudes slightl. It messes up my six pack abs but it is unnoticed with shirt on. I am up to 650 mcgs daily and am off all oral meds and feel great!

Motor

[Apparelyzed]

Hi Benok,

Yes, the baclofen pump is implanted under the skin.

The intrathecal space is a fluid filled space around your spinal cord, also called the subarachnoid space. Cerebrospinal fluid (CSF) flows through this area, bathing and protecting your spinal cord.

The tip of the tubing sits in this space where it delivers the baclofen from the pump, which is placed on the abdominal wall, under the skin.

Regards

Simon

[benok]

Apparelyzed, on Jul 7 2008, 03:16 PM, said:

Hi Benok,

Yes, the baclofen pump is implanted under the skin.

The intrathecal space is a fluid filled space around your spinal cord, also called the subarachnoid space. Cerebrospinal fluid (CSF) flows through this area, bathing and protecting your spinal cord.

The tip of the tubing sits in this space where it delivers the baclofen from the pump, which is placed on the abdominal wall, under the skin.

Regards

Simon

More questions...
From the post below, is the pump placed somewhere in the abdomen area? (I have a colostomy bag right now.)

If i had a laminectomy due to SCI, will placing a pump require opening me up again?

[Hikkakaru]

benok, on Jul 10 2008, 06:30 AM, said:

Apparelyzed, on Jul 7 2008, 03:16 PM, said:

Hi Benok,

Yes, the baclofen pump is implanted under the skin.

The intrathecal space is a fluid filled space around your spinal cord, also called the subarachnoid space. Cerebrospinal fluid (CSF) flows through this area, bathing and protecting your spinal cord.

The tip of the tubing sits in this space where it delivers the baclofen from the pump, which is placed on the abdominal wall, under the skin.

Regards

Simon

More questions...
From the post below, is the pump placed somewhere in the abdomen area? (I have a colostomy bag right now.)

If i had a laminectomy due to SCI, will placing a pump require opening me up again?

Well, since it is a subdermal implant, it will require surgery. Are you talking about in regards to your back?

[Edtezky]

It all depends how skinny you are that will determine if it sticks out a lot or not. I am a pretty skinny guy so mine looks like a hockey puck on my right side. You cant notice it with a normal tshirt on. However you can see it if you were a skin tight shirt. With out the pump my legs were stuck together and my leg would stick out strait like a yard stick. Now i had the pump for 4 years and I am up too 1000 micro cc. W.e it is. my body is relaxed and i can do the things i need to do though out the day a lot easier. I do monosking street hockey, and the pump doesn't bother me. If you are really struggling with ur spazms...take the pump test. They just inject you with a small doss and you can feel the affects before getting the surgery. You decide if its worth it.

[megatrig]

Under NO circumstances let Dr Jamous at Stoke Mandeville perform the insertion or aftercare!!

pm me for more!

[TekDiveGirl]

Edtezky, on Sep 12 2008, 12:51 PM, said:

It all depends how skinny you are that will determine if it sticks out a lot or not. I am a pretty skinny guy so mine looks like a hockey puck on my right side. You cant notice it with a normal tshirt on. However you can see it if you were a skin tight shirt. With out the pump my legs were stuck together and my leg would stick out strait like a yard stick. Now i had the pump for 4 years and I am up too 1000 micro cc. W.e it is. my body is relaxed and i can do the things i need to do though out the day a lot easier. I do monosking street hockey, and the pump doesn't bother me. If you are really struggling with ur spazms...take the pump test. They just inject you with a small doss and you can feel the affects before getting the surgery. You decide if its worth it.

How long did it take before you got up to the 1000 micro cc dose per day?

I have had my pump since 12/18/07 and am only 329 micro cc's per day and I still have seen no relief from my spasms or spasticity.

I'm wondering why everybody has such great results with this thing EXCEPT me!

Edited by TekDiveGirl, 13 November 2008 - 12:05 AM.

[megatrig]

Dr Jamous will be using a Medatronic pump. "I believe that they changed them a short .. ish while ago"

He finally got the tech info after they changed them 2 years ago!! A patient was in and he didn't know why it wasn't working so after 2 years he thought he should get info!!

As it relaxes ALL soft muscle from around T10 down it may affect your bladder and bowels! The intrathecal baclofen drips directly into the spinal cord basically paralysing it. Rough illustration!! But then in turn Should!! .. relax spasm!??!! Works in most cases as seen by test dose!

In my case my bowel regime went totally out and some 3 years on is still a problem after the pump was removed.

My bladder spincter was relaxed ... actually a bonus as I had a tight Sphincter that was/is controlled with botox injections.

As you are relaxing soft tissue from T10. Erections "may" be affected!

My pump moved and rubbed/ground against my rib causing me incredible pain. I have sensation!! That and the dramatic effect on bowels was the reason for removal! I was in agony all day. Unless I just lay in bed!

I had the pump removed 18 months ago and am still in incredible pain from this point. Unknown reason!!! I'm battling to solve this!!

Frequency of leads coming unattatched/twisted .. not recorded!!

I had an unfortunate experiance and it was a hellish 18 months trying to FIGHT TOOTH AND NAIL to get my pump sorted .. and then removed!

I am now in agony from the site where the pump was! Spasm is even worse and life is hell!

Ok Ok I was unlucky! I have seen and heard of a number of horror stories!

Go in with yours eyes open!

It is a difficult call. I probably like you couldn't cope with drugs anympre and spasm gettimng worse!!!

I went down this path and it went dreadfully wrong!!

If you decide to go for it good luck!!!

I sound very bitter and upset .. BUT .. it drove me to this!!

See a post by Nicks Mum as the effect of a pump on him has been traumatic too!!

Having said all that .. they can be very very good I have seen them work!

But by no means are they without risk!

Sorry to rant on!