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Bacolfen Pump

prioremt1
0 Recommendations

Anyone have a baclofen pump? My son's spasticity is very bad and this the the next step according to the doc. I am a little skeptical about this so any info would be appreciated.

Explore topics in this discussion:

Exercise Surgery Pain Spasticity Baclofen

9 replies

quadyame

Hi prioremt1 my name is Tim I'm a member of the NSCIA of New Hampshire and we had a quad. women as are president. Well she was told that you don't need to be on baclofen, alls you need is message , range of mottion and exersize. So when she told me this I weaded off 25 mg. of baclofen .And I had the same a mount of spasiums. I take 2 mg.of valume. I hope this will help you and ypur son. The Dr. told her she would never walk again, but she walks on a tread mill. So Doc's don't know everything, sorry to tell you this it's all up to you. I'm E.M.T traind. Thanks for asking I would like to be a friend.
Tim

pdecrease

We have a friend whose minor child has one. My son just finished getting a baclofin test. They inject the medicine in your spine to see if it will work. The results were good, but not as good as we thought. However, the rep said that the injection was done low on my sons back and that when they do the install it will be higher calming more spasims. His jumping legs stopped, but he still got pull inwards in the thighs when he moves forward in his chair. We were told this may be corrected after the install. We have three more weeks to wait. P. DeCrease

pdecrease

My son did the gammit - massage, therapy, exercise, swiming, stretching - nothing worked. Oral meds, and botox injections. His spasims are so severe he is woken at night and thrown off his bench in the shower - it's a danger and a big hinderance to quality of life. Exercise and massage does not work for everyone but you should surely try it first.

tfox

I have a pump. I got mine more 4 years ago, and like your son, my spasticity was unbareible (sp?) (and I was on the highest oral dosage). Since I've had the the pump, my spasticity has been GREATLY reduced. The doc should let you watch a video on it (mine did), but I hope you have insurance! They're NOT cheap! Mine cos over $30,000 and $3,200 every 5 months!!!

PS...A few years ago, I wrote my biography using 1 finger! I'd like you to have it. If you read it, let me know what you think:

Here's my autobiography. It took me over 7 months w/ 1 finger!!! When you have some time, I'd like to get your comments.

You can find my bio on this site:

http://home.comcast.net/~jfdresser/backontrack/

angelbrd67

We are in the same position as you are. Accept we were on more than baclofen .. the doses of anti spasisity meds Matt was on was unreal and even a Pharmasist came unglued on us because he said the doses the doc put him on were way to high. he was on the maximum dose of 40mg of Baclofen 3 times a day and 12mg of zaniflex and 400 mg of Nuerontin. My son a couple weeks ago was in a drug induced nightmare. He could hardly hold his head up but hey the spasisity was better but not gone. I told the Dr no one can live like this. You can't get use to a dose like that with out reprocussions. Zaniflex messes with your liver after awhile. My son spends 90 percent of his life in spasms fighting his body. Stretching and range of motion exercises do help. They relieve the spasms for a short period of time. But how much time do you have to spend stretching? As a caregiver and Mom of this 6'5 244lb son That process is hard 3 times a day to control his spasms we would have to do it every hour as the stretching only lasts about 30 minutes or so. We go for our trial soon. Then with hope he will respond well and we will get the pump. They pushed our trial back and I can't tell you the pain he feels having to wait longer. He is so excited after watching the video's. Spasms hurt and they cause great uncomfort when people touch him. He would love to be able to get a hug again with out his lower back and hips tensing up.

The Dr told us
The pump is not permanent it can be removed if you don't like its results at any time.

It can be adjusted to administer doses through out the day at different levels to help more when he needs it.

The risks are minimal. Like with all surgery's there is the risk of infection,...They told us to avoid or be careful with high contact sports or activitys like rugby as the tube might slip or kink and have to be replaced this to is rare. They told us to be careful scuba diving not to go below 40ft.
NOT A PROBLEM..lol there are many things to see above 40ft..lol. I watched the video's and watched people who with out the pump couldn't transfer or some with MS who couldn't walk and with the pump it was a difference like night and day. They had such relief from this pump and the MS patient even walked after.

Spasms cripple the body even more than the injury did. You just have to decide what is best for you. Dr's can only suggest what they feel is best for you in their oppinion. They also told us that his spasms are restricting the therapy he is getting now and making it basically non productive and that the longer we wait the harder its going to be for him trying to do therapy.

The optimal thing would be to get off any and all drugs if you can. With the pump you get much less of the drug producing the optimal results with alot less of the side effects that it has. This for us is important as my son has started to go back to school. He needs his mind to be clear to study. He has only been hurt 7 months now. It isn't easy for him adjusting to this new way of living and he is the one living it so I left the choice up to him. He didn't want the pump at first but after months of drugs and spasms he has begged for it. So we are going to do it.

What ever you decide good luck to you and your son.

Michelle and Matt!

prioremt1

Thanks for all the help! We are going to have the trial run on October 6th. Hopefully there will be some positive results. This is awful!! He cant even transfer without the risk of being thrown on the floor. I thank you all for your input - it is so nice to talk with someone who understands! We are kind of new at this - It has only been a little over a year. Talk about life-altering!! I will let you know how it goes!

angelbrd67

we go for Matts trial Oct 6th as well. keeping you in our prayers!

creekwater

DEAR PRIOREMT1, I'VE SEEN AND NO MANY THAT HAVE THIS PUMP, ONE INSTANCE IS A FRIEND W/ QUADRAPLEGIA HAD SUCH TERRIBLE SPASMS THAT HE'D HIT A BUMP IN ROAD WHILE DRIVING AND WOULD ALMOST WRECK FROM HIS SPASMS, HE HAD THE PUMP IMPLANTED, TEN YEARS AGO, AND IT WAS NIGHT AND DAY DIFFERENCE. HE NOW ENJOYS LIFE AND DRIVING. ANOTHER MAN I KNOW W/ M.S. HAD THE IMPLANT AND THE SAME RESULTS. PRO'S ARE YOU ONLY HAVE TO TAKE A FRACTION OF THE MEDICINE AND I'VE SEEN GREAT RESULTS, CON'S ARE THAT PUMP HAS TO BE RELOCATED, SIDE TO SIDE PERIODICALLY AND GOING ONE TIME A MONTH FOR A "FILL-UP", KEEP RESEARCHING. I PERSONALLY WAS ON 120 MG PER DAY AND FOUND MYSELF STILL WITH SPASMS, WHEN EVER I LAID DOWN OR SAT TO LONG W/OUT MOVING AND I WHINNED(sp)MYSELF OFF OF MED AND FOUND THAT I HAD MORE STAMINA, ENDURANCE AND SRENGTH. I EXERCISE AND STRETCH AND THAT PROVED TO BE KEY. I PRAY THAT THIS HELPS,.. A LITTLE. IT IS TERRILE TO WATCH SOMEONE GO THHROUGH THOSE WICKED CRAMPS, CONSTRICTION OF MUSCLES, AND BEING THROWN ALL OVER THE PLACE, C.W.

rlord

I got a pump 3 years ago. It allowed me to go from 60mg to 30mg oral per day, reducing side effects. It works great below my waist. The oral meds are needed to deal with my upper body. Talk with your doc about the choice of the level at which the catheter will be placed.

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