Baclofen Pump

[Al]

I would hope that only a Neuro experienced in ALS/MND would suggest this and would explain the risks. That being said, we all know that some Neuro's are not as well versed as others. So ask questions and do research.

AL.

 

[Whitsend]

I dont know what kind of doc. some go to But one person here made a statement that the Pump goes in the Stomach .This could be no further from the truth as the Pump is put in the Lumbar spine .The reason i show concern is yes It is in the Spine between the Vertebra and if you do fall yes you can break that needle off so yes i am concerned for some going into this . The Lateral Spinal Columns run down each side of the spine . If that needle comes in contact with those Lateral Columns you'll have a pain you will never forget . This is something you should not do lightly this is serious business . Geo

Geo,

Actually, the pump does go in the abdomen area. A tube is then run around to the spine and a catheter is what is placed in the spinal column.

 

[Geo]

If you read what i stated you'll then know what im talking about . In the original post i stated this is risky business in so many words because this is going into the spine ,if someone falls and this is in the spine it stands a chance of severing one of the lateral columns . Im not concerned where that Dumn pump goes its the fact the needle is in the spine .Raymond states theres no risk as the pump goes in the stomach . This is not of concern . I dont like being misquoted or being taken out of context . For people who want to know go to Google.com/ Images then put in Baclofen Pump this will show you what im talking about . I had a friend whos intrethecal Pump operation didnt go so good and could have severed one of the Lateral Columns and had to have it taken out . Geo

 

[Whitsend]

If you read what i stated you'll then know what im talking about . In the original post i stated this is risky business in so many words because this is going into the spine ,if someone falls and this is in the spine it stands a chance of severing one of the lateral columns . Im not concerned where that Dumn pump goes its the fact the needle is in the spine .Raymond states theres no risk as the pump goes in the stomach . This is not of concern . I dont like being misquoted or being taken out of context . For people who want to know go to Google.com/ Images then put in Baclofen Pump this will show you what im talking about . I had a friend whos intrethecal Pump operation didnt go so good and could have severed one of the Lateral Columns and had to have it taken out . Geo

Hate to split hairs, but this is exactly what you said: But one person here made a statement that the Pump goes in the Stomach .This could be no further from the truth as the Pump is put in the Lumbar spine .

I got your point regarding the perils of putting something in the spine. And am sorry about the problems your friend went through. But my current quality of life sucks. I sit in this house 24/7. I have no relatives in the area. Few friends ever come to visit. About the only time I leave the house is for a medical appointment. My husband works long hours and I sit here by myself all day. I can still drive, but can't do anything by myself once I get where I'm going. I can barely drag myself from one side of the house to the other.

If there is something that will give me back a fraction of the life I used to have, I am going to give it try. I refuse to just sit here and wither away when there is something out there that can help alleviate the symptoms.

 

[Al]

I hope you folks aren't going to get in a peeing contest here. Sort of looks like one brewing and I'd sure hate to spoil our long weekend here.

AL.

 

[Geo]

Sorry Bud ,didnt mean it to come out that way ,i just had a good friend who had a bad expierience with that and dont wish that on anyone else . Have a Good day all . Geo

 

[Al]

We do appreciate the story and advice.

AL

 

[miabethr]

Baclofen pump has been remarkable

In contrast to some of the negative posts about the pump, we all have to remember that we are all different with different Nuerologists and it was a first resort for me. i chose to try it to better my chances for mobility and to keep my speech clear so i can work. I must say it was the best choice, for me that is. Granted, i understand there are risks, but i would like to clarify that there is no needle inserted into the spine. I have been told that if i fell on the pump (inserted into my abdomen) i could dislodge the catheter, but it would be impossible to fall on your back and alter the catheter because it is in the small of your back and you wouldn't land flat on your lower lumbar area- it would be impossible, because of the curvature of our backs, plus there is no needle invovled. If there were, i would have thought long and hard about the surgery.

My point- if your Nuerologist thinks you are a candidate- do the test dose- get a feel for how your legs will feel and how much better your speech will be (if that is a symptom for you). It has made a remarkable difference for me and i chose to do it now while my son is young and needs me to be more mobile. It surely is an individual choice. I just prayed for a surgeon who would get the pump in without complications and so far so good. I hope this helps with some of the inquiries. God Bless you all-

Mia

 

[sral]

Mia,

Thanks for posting. I had been thinking of you and wondering how it went. I guess you notice significant changes. I'm really happy it worked out.

If you don't mind me asking how was you speech before and after the pump? Was speech the most affected from this disease?

Wishing you well.

 

[miabethr]

sral,

My speech and my legs were affected by PLS. The stiffness in my legs came first and then i slowly began to sound like i was drunk- my speech was slurred and slow. When stressed it would be even worse and i am a teacher so it was something i had to explain to my high school students. After the surgery- when i spoke for the first time i was much clearer and have remained that way, so far. I just recently had the dose increased and it continues to help me. Hope this helps- take care!

Mia

 

[sral]

Thanks so much Mia.

My mom's speech started first and then her legs. It's been almost 3 years now.

I can totally understand your need to keep your speech clear. I'm impressed that there is something that works. My mom has tried balcofen for her symptoms but not on a regular basis. She takes it when she finds her legs are stiff and in pain. I don't know if she has paid attention to how her speech gets affected when she takes it. However, I think she is on a low dose. What's a normal daily dose of balcofen that people take?

 

[miabethr]

hi sral

i used to take 20 mgs twice a day and that made me drowsy and foggy mentally at times. the pump is a totally different thing because you have to take it internally thus bypassing many side effects= like sleepiness and at times it would make my tongue feel thick and hard at times to be understood. now it is better and not as bad as it was, so i am thankful! to want the contact wedsite?

let me know

mia

 

[sral]

Sure, please pass on the contact.

By the way, if balcofen gave you not so nice side effects, did you fear that the pump would do the same? How did the pump option come up?

 

[miabethr]

sral

sorry it has taken me so long to respond- i am being seen by an excellent nueromuscular doctor at northwestern in chicago and on my spring visit i had asked her what other options i may have and she suggested the pump. i know many small town nueros dont have as much info about pls and dont suggest it as a therapy. i got lucky with having a knowledgable DR. because she had to convince a local nuero DR to put it in me (i live 3 hours from Chicago) because i needed a DR nearby in case something went wrong. Medtronic is the company and it is called ITB therapy and it continues to keep me less spastic and with much clearer speech. Google either of the above. Best of luck to you- you remain in my prayers!

Mia

 

[sral]

Thanks Mia.

My mom actually went to the neuro yesterday and we talked to the specialist that does the balcofen recommendation based on symptoms etc. My mom had not been on a regular dose of balcofen. She would take 10mg when she felt she needed, i.e. mostly before going out. Needless to say, after almost 17mths that symptoms started in her legs, her legs are extremely stiff. The Dr said that the reason she was having so much leg pain was because her legs were so spastic causing swelling and pain. He has started her on a plan of regular balcofen. She will work her dose up gradually every 3 days. He is hopeful that this will help. Anyway, when I asked about the balcofen pump he said that that is for people who have already taken balcofen on a regular basis and need to get an even higher dose than the oral form. He also said that he believes it is very invasive and susceptible to infection. This said, he did say that there were very few people in our country that did it and that it was done more in the US.

Anyway, if needed this is probable an option down the road.

By the way, why did the oral dose of balcofen not work for you?