Intrathecal Pump?????

[trendz]

Hello all. Its been a while since i have been on here and of course i am still trying to find someone to help me. Im 32 with a 14 month old and a 3 year old marriage. Im struggling here. I have a business with 10-12 employees and i havent worked at it since my surgery dec 18, 2007. I cant drive and i cant work. I feel useless. I have seen soooo many doctors and now they are talking about possiable going back in and seeing if there is scar tissue. Im petrafied. The doc i seen yesterday is talking to me about a morphine pump (intrathecal pump). Does anyone have one and if so how is it? How long have you had it? What kind of pain did it help with? can you tell me the good and the bad. As usual im petrafied. I CANNOT believe this is happening. im still in denial. They want me to go for therapy (mental) but my insurance doesnt cover it. Please give me any advice would be great.
Have a fantastic day.

[tlserenity]

I don't have a morphine pump.

But I have my days where i am majorly depressed over the state of my life with my health as it is -
and I keep coming back to the message board to talk to and listen to people that are giong through the same things that I am -
they give me strength and laughter to help me get through it all -
and to let me know I am not alone.

So while I cannot help you with the morphine pump part - maybe with the petrified, denial, depressed part - we all can help you?

God bless -

[Beverley]

I am so sorry you are having such a long road with recovery.

I have heard of people getting the pump put in for thier Dystonia so I would guess that it would be similary. One guy just got a pump with Bacoflin (Sp) and he has been extremely happy with the results so far.

You really need them to discuss this surgery with you. It is not a quick thing either. I think they first implant the pumb and this includes them attaching it directely to the spine through the dura. Then this surgery has to heal. He has some problems with this and had a spinal leak that lead to the headaches. I have no idea how commom this complication is only that it happened to him. It was a couple of weeks before they filled the pump and got it started. He is now in the adjustment stage where they are determining the correct dosage for him.

Now I could be wrong on all this becasue I have not had this done so I am only accounting someone's experience. The last I heard it was working and he was able to stand up straight for the first time in a couple of years. So they can be a great benefit.

As far as the surgery for scar tissue. This is a complication that does happen to some people. I do hope that your NS is a knowledgeable surgeon. If you are the least bit uncomfortable with him/her. Get another opinion if you can. I do know that when you are miserable though that can be very difficult.

After my decompression I ended up having a disc herniate at C5&6 and needed a cervical fusion for C5&6 6&7. This has help me greatly. In 9 months was was getting worse in my walking and balance. This disc was not herniated before my decompression so the release of the pressure enabled it to herniated directly into my spinal cord probably during physical Therapy. So things can get worse and other problems can arise.

I pray that this does help you. It may not hurt to appeal your insurance company for a few trips to a counselor or theraphist. All these problems can lead anyone to a feeling that things just are not going to get better. Without hope it makes it hard to make good decision for yourself. And many of these decision are overwhelming for the strongest individual. Maybe you have a good friend you could confide in also. We are always here to listen. The best thing on here is that someone has probably been where you are, if not exactly, many of us can relate overall.

Blessings to you.
Beverley

[svennobalance]

Hi,

I have a Baclofen pump and love it - I just learned I can have a mix of morphine and baclofen and may look into that. My surgery was easy and uncomplicated. I spent a week in a rehab to retrain suddenly less spastic muscles. I rarely have bad spasming in my leg anymore. (I went 8-9 years with progressively worse spasming to the point I couldn't sleep or sit or stand for longer than half an hour at a time). I think the possibility of complications as long as you have it is pretty great - but so is taking lots of oral meds! I already had to have a revision but it was actually an outpatient surgery - I was home by seven pm and healed quickly. Even knowing I'll have to have the thing replaced surgically ever 5-7 years doesn't bother me - the relief without side affects has been amazing.

Gabriel

[wkmcconnell]

Keep your head up. I had surgery on Oct 23rd and am still struggling to get my life back together. I thought that I would be on my feet in a few months. But I am almost 4 months out and barely working 3 1/2 days a week. And when I get home in the afternoon I have to take a nap. Sometimes just an hour and then other days I have to rest longer. I am a nurse and work in a very busy clinic and on my feet the whole time. But my other staff know when to tell me to stop. We have worked together long enough that they can read me good and that helps save me painand fatigue later on. I have tried to push myself and it has only set me back steps. MY friends all tell me to take the opportunity to get spoiled. But you see I am a go getter. I coach baskteball (which I have been unable to do this year, and it kills me), I also work on my family farm and ranch. We have 600 head of cattle, 4 horses, 50 chickens and soon I am getting pigs. I can't forget about the 3 cattle dogs. You see I am a person that never sits still and it kills me. I want to do everything that I us to but now I have to step back and tell myself that I just cannot do it. My Dr. and family just keep telling me that it will take time. NOt to expect an instant change. They are telling me to plan on 6 months to a year for full recovery. I have been suffering from headaches again and also my neck is always killing me. My head feels like it weighs a 100lbs at times.

All I can say is keep your head up and just take it one day at a time. Just remember, you had major surgery and your body has been through a lot and can't just heal instantly.

Wendy

p.s. When they say nurses make the worst patients I think they were right. I am HORRIBLE!!!

[trendz]

Thank you soo much everyone for your responses. I have been looking into this pump and im so worried since my other surgery didnt go so well. its been 1 & 1/2 years since that surgery and im in insane pain ALL the time. Thank you tho to everyone that has any advice or comments.

[kirafaye]

I got my morphine pump (intrathecal pain pump) in June last year and man do I love it. I was basically on phetonyl paths, heaps of oxycontin and many other drugs and could barly get out of bed. I had the trial which for me was an external version of the pump which they monitoered me on and man did it feel good (if it helps up to 50% of the pain they usually go ahead if you want to). I had the surgery a few months later and am now back to working a bit and back to uni. I am happy to tell you all about how the surgery and recovery was if you want to pm me.
Kira

[kirafaye]

Did you get my pm?

[syrinx48]

When having a intra thecal pump are you still able to get a MRI?

I am having a lot of spams and my medication is still increasing,I had to increase my depakot (depakine in Holland) for it into 1250mg a day. I have clonazepam 4 times a day 0.5mg. I was starting to wonder if a baclofen pump was something for me.

Annemarie from Holland

[kirafaye]

Yes you can, thats the difference in choice between a pain pump and a nerve stimulator. The stimulator leads are metal and in the spine so you can't have an MRI. I haven't had a scan since the pump yet (will soon) but all apprently what will happen is it will stop temporarily while in the machine but the time its stopped is so negligable it wont affect your treatment. Also like anything else it might distort the image in that area because of it being in there but for most that is completly no issue.

I will post the pm I sent to trendz here for others to read.



Hi there, I understand how you would feel about becoming a drug addict, before I had this I was using fentonyl patches, oxycontin oxycodone, had ketamine and was on several different drugs and been to pain rehab about it. I have a decent case of chiari for which I have had 2 surgeries and still suffering, my syrinx runs from c2-t10 and was verythick before the surgeries. After my decompression the syrinx and my spine decreased in width so it still takes up the same proportion of my cord as before. As for my pain it started in my right arm a few years back before diagnosis and became all consuming throughout the body to the extent I was bed ridden and getting people in to clean the house and getting meals on wheels daily as I could not cook. I was 21 at the time of all of this.

I had my trial for the pump in april 2008. That was a quick enough surgery I was in day surgery, they put me out with general and under xray inserted the epidural type thing at the discussed level and that was attached to external pump like an IV. I wasn't able to shower for those few days in hospital but I was feeling with the pump in I could shower every morning if I was able to which was new for me. I felt like getting up and cleaning myself. I felt like it was a success (you doctor will discuss how they define sucess, mine was a 50% reduction in pain). I was on for about 4-5days and had no issues. During that time they keep a huge eye on your oxygen levels and blood pessure through the day and night but thats about all. They then removed it while I was in my room (doesn't hurt) and I was free to go home and organise for the next surgery (minimum 6 weeks wait according to my surgeon - this differes for surgeons)

I got the actual pump a few weeks letter then the planned 6 weeks because my surgeon was on holidays so I got his college to do it as he specialised in it. This is full surgery and I was admitted the normal way, cleaned blood pressure etc. they discussed placement and what was to be done and I was then sedated. I remember waking up not feeling to bad at all beyond normal waking up feelings from general. I was kept down there for awhile as they didn't have my room ready (my pain ward is aso the cancer ward)

I then found out the best advice I can offer with this surgery, DEMAND a catheter! You can not sit up for 24hrs! and bed pans do not work. I had to keep sitting up against their orders to go to the bathroom. Also if possible have a private room, I was in a ward due to room shortages and had a great deal of difficulty sleeping causes me more pain and issues. Also you almost definatly will get a spinal headache. Even with 1ml of spinal fluid gone you will get a headache like you face has been smashed. Hence why private rooms are good so you can sleep in the dark with lots of fluids, they will make you drink high caffiene drinks. The rest o the stay got better I didn't have much issues except they kept me in a bit longer as I needed to spend more time on the drip as I was still quite dizzy. They also like to keep you on blood pressure and o2sats a lot. Sometimes even oxygen at night, just because the morphine (or whatever drug theyr choose).

Ok the surgery itself, they insert the tubing into the area around your spinal cord called the intrathecal area, so you will hve a scar there, then they run the tubing through to the front of your abdomen so you may have a tiny scar on yoru side. then they implant the pumpy under the skin and sewin into the fat of the abdomen - that will leave a decent scar (I have pictures I can show) they will usually put about half as much fluid as it can hold in to make sure its easier to help if something goes wrong or they need to adjust concentrations. They are relativly hard to see but if you start losing weight like me it will stick out until it needs replacment.

I have a synchromed 2 which has battereies (there are a couple of types you doctor will discuss that do different things) and I need the unit replaced every 7yrs when the batteries wear out. So yes surgery ever 7yrs for me, but they only need to do half the surgery they wont fiddle with the back unless needed and that will drastically reduce healing time and issues I had the first surgery. To refill is basically they get a needle and put it into the pump and draw out the remaining fluids, and then oush the new fluids in, I have found this procedure to be relativly and sometimes totally painless and nothign I worry about. They also have a little machine that 'talk's' to your pump which tells how everything si going and they just lie a little thing acorss the pump and thats how they increase and decrease how much meds you get and its non invansive. Also for interest sake, not all do it but quite a few will beep audibly when they are running out of meds or battery, have yet to hear mine

I love my pump and have named it wilson, I am still in a lot of pain but I am back to working (manchester - sheets and all that and sales) and trying to go back to uni this semester. This time last year I was in agony and could barly function and very depressed. Now I am actually feeling hopefully and even though I am on morphoine I do not get the dreaded side affects of oral narcotics which used to leave me sleepign for days and nauseas. I am very very happy with my pump. It will take awhile for them to slowly step up your dose and figure things out, we havent even got the right dose for me after 6 months) but I am still very happy and no longer depressed.

I hope this helps and if you need further clarification on anything please do not hesitate to pm me again I am always happy to help.

Hopefully these links work for my scars
Back Scar
Front Scar
With this front scar you can see where my fingers are are showing the dimensions of the pump. They are touching the top and bottom of the pump


These look terrible because I took them just home from surgery, I was very swollen then

ps. for a number of weeks/ months you do have a weight lifting and twisting restriction you need to follow, mine was no twisting and driving for a few weeks and nothing more then 2kgs for a number of weeks. These are very important at the start as your body has not fully attached to the pump yet when it does the bans will lift. Also seeing its just under your skin you can feel it, I am not sure how other people feel abotu it intimatly as I have yet to be intimate since I got it. Also you can have MRI's with this it just needs to be reset sometimes (I haven't had one yet, but I just had surgery with it two days ago for my adenoids, man that helps with after surgery pain). Also going through security things like at the airport will be a pain and you have a card so you don;t walk through as that can play hacov. These will all be explained but just things I thought up at the last minute
Kira

[syrinx48]

Thank you Kira, for your honesty. This morning I read in the newspaper that I am not longer able to drive a car because of my medication. If something happens I am no longer secured. My husband thinks I take it too literally and don't have to worry.

I so desperately want to get rid of my medication and functioning again. In March I have an appointment with my NL and talk to him about it. I already wrote an email to my German NS and asked his opinion about having the pump.

Annemarie from Holland

[kirafaye]

As I wrote in your pm you may also have to see a pain specialist about it as my pain specialist did everything with it and am very lucky to be next to a hospital that works with the makers and has special training .

I am still on meds but not oral narcotics. I do love the fact I am no longer made a zombie by my meds and can actually function a lot more because of pain reduction and reduction of side affects. With any surgery its a gamble and I won this one thank god, however its good because they will alwyas (should always) do a trial before hand to give you a good guesstimation of hwo you feel and if its worth it.

ps. note sure if I mentioned it, depends on on the pump you have some have batteries, so if you have one with batteries you need to be aware you will need surgery every 7yrs to replace the pack in your abdomen and if something goes wrong it can be a lot worse then just oral meds. I do know there is already been 1 FDA recall since I had my pump in - however when I queried my specialist about it it was nothing of real concern especially for my set up. Just remember your putting a machine in your body.

[gncrzy3]

If anyone who has had this done would be so kind to help me I would
Appreciate it!! I am being sent for an eval for an intrathecal pump for
Baclofen on the 10th. I am currently up to 75 mg morphine sulphate twice
A day and have severe muscle spasms that ate pulling my spine out of
Place do to sm c 4 to l1. And spreading numbness through out my right
Side. And still have quite a bit of pain. Do you have to have injections
Prior to the surgery? If so how many and where? How long were you inpatient?
How severe is post op pain? Also what was your success with it? I know I
Am asking a million questions, but not knowing is driving me nuts. I have had multiple
Spinal surgeries so I am no stranger to pain. Thank you for your help I advance !!