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Thread: Saw the Neurosurgeon Today

  1. #1

    Saw the Neurosurgeon Today

    Hi everyone,

    I had posted a while back asking some questions about a Baclofen pump..

    Just a little recap:

    I have Cerebral Palsy and have been on Baclofen since June 2017. I landed in the ER with significant muscle tone and severe bank pain. The back pain did not respond to pain killers, only Baclofen; therefore, it was believed to be related to spastiscity. The next morning, I was assessed by Neurology and it was recommended I continue to go through a gradual increase of medication to help extreme lower extremity spasticity.

    So, today I saw the Neurosurgeon to discuss the possibility of a pump and he has agreed to do the trial. His reasons for agreeing to do so are as follows:

    - He has had patients who don't respond very well to oral Baclofen that have a positive response to the test
    - Baclofen in the spinal canal is much more effective
    - The maximum dose of Baclofen that he would want me on is 70 milligrams.

    I forgot to ask.. will a pump effect one's ability to have kids? Has anyone had a positive experience with the test even if the oral Baclofen doesn't do much?

  2. #2
    Quote Originally Posted by wheeliegirl2010 View Post
    Has anyone had a positive experience with the test even if the oral Baclofen doesn't do much?
    Yes. Night and day difference.

  3. #3
    Really? Can you tell me more if it's not too personal?

  4. #4
    Oral baclofen was not effective for me. It took the edge off by calming the weak spasms. But the strong spasms persisted even at the highest dosage of 80 mg/day. I could never get over the side effects like drowziness and muscle weakness. I was always sleepy, tired, and BMs slowed down. You also have to take it like clockwork or else spasms will get stronger and tone will increase. I don't know what was worse, spasms or tone. They both interfere with sleep and mobility. But I think tone causes more pain and interferes more with mobility. That was the worst part about oral baclofen. The more I took, the more I needed or else the tone just got worse.

    None of these problems exist with the pump. It just works as it is supposed to with minimal side effects. My dosage is less than 100 ug (1000 times less than the oral dosage) so side effects are negligible. You can mix baclofen with other medications in the pump for pain if necessary.

    Having said all this, the pump works like a charm until it doesn't. If you get the pump, know how to detect a failure and get a doctor who knows and cares. My first pump doctor was a neurosurgeon, who was clueless. He replaced the baclofen every 4 months thinking that it was fine because it has a 6-month shelf life. Yeah, it has a 6-month shelf life, but body heat cuts it in half. He did not know this. He did not diagnose a faulty pump even though I had textbook side effects (strong spasms and itchy skin). I went to a second doctor, a pain guy who was equally clueless. Finally, I went to a third doctor who was a pain and physical medicine guy. He immediately knew the pump was faulty. As soon as it was replaced all the spasms went away overnight.

    I had a long history of spasms for over 30 years. The spasms made me miserable. Alcohol was the most effective solution. The pump has changed my life. I finally feel the quality of life... being able to relax without alcohol or drugs (other than baclofen).

    Find yourself a younger doctor who has many pump patients. Many older people are averse to change and technology and some are technology-illiterate. Doctors are no exception. I know a retired doctor personally who hates computers and even cell phones. This is not the guy you want managing your pump. But that's the type I got in the first two doctors. Get a younger doctor.

  5. #5
    Thank so much for all the info. The doc I saw yesterday was incredible. He told me that we will really have to watch for symptoms of overdose/failure and spoke of the itching. He also wasn't rushed as most specialists are. He explained the advantages and risks and answered our copious amounts of questions. He made have confidence in his
    ability and knowledge.

    Isn't muscle weakness the objective and that's when people learn their tone actually helps them?

    The tone is what kills me. It's painful and makes it so hard to move; it's to the point I can't keep my feet on the footplate of my manual chair quite often.

    Thanks again for taking the time to post, it makes me feel even more confident a trial is worth it

  6. #6
    Quote Originally Posted by wheeliegirl2010 View Post
    Thank so much for all the info. The doc I saw yesterday was incredible. He told me that we will really have to watch for symptoms of overdose/failure and spoke of the itching. He also wasn't rushed as most specialists are. He explained the advantages and risks and answered our copious amounts of questions. He made have confidence in his
    ability and knowledge.

    Isn't muscle weakness the objective and that's when people learn their tone actually helps them?

    The tone is what kills me. It's painful and makes it so hard to move; it's to the point I can't keep my feet on the footplate of my manual chair quite often.

    Thanks again for taking the time to post, it makes me feel even more confident a trial is worth it
    Baclofen underdose (withdrawal) can be just as dangerous if not more than overdose. It's worse than narcotic withdrawal. Because narcotic withdrawal just makes you feel bad. Baclofen withdrawal can lead to spasms so strong they may fracture bones and impede breathing. It may even lead to death.

    You don't want baclofen in the spinal cord above your injury level. Hence, they inject the baclofen in your lower spinal cord area. But some of it makes it way up the spinal cord all the way to brain. Even if you are a para and have full control over your arm muscles, the baclofen will still weaken your arm muscles. That is what I meant by muscle weakness.
    Last edited by August West; 01-31-2019 at 05:27 AM.

  7. #7
    I am so excited! We did the trial Tuesday and Wednesday this week, wow! I was able to transfer from hospital bed to chair and keep my feet on my foot plate, It's so strange, I got a warm sensation in my aductors (the muscle that is usually the tightest)

    I will be going for surgery within the next month to month and a half. I am so, so glad we opted to try this!

  8. #8
    Good luck. Of course, you are aware that reducing spasms may reduce pain. You may also find that that it may make transfers (and mobility in general) easier. That in turn may prevent other problems in the future, like shoulder injury from overcompensating.

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