Neuro visit and Intrathecal Baclofen Pump

[Sunshine 2]

The doctor agreed with me that I am getting worse with spasticity and that the high doses of Baclofen cause such miserable size effects and the drugs managing the side effects have side effects of their own.

So, I am going to try the pump. Will take time to get this lined up. They test you, and if you pass, they do outpatient surgery where they install a small pump in your abdomen, it then has a tube that goes into your spinal cord . They can put necessary Baclofen dose into the spinal canal, thereby not getting all the systemic side effects by taking pills. Plus, you can get higher doses of Baclofen that way, theoretically less spasticity and less spasms.

Its a bit scary, but my life has become so limited and impaired and filled with pain and fear, that I am willing to try it. Many SPS patients go this route.

You then have to refill the pump every 5 weeks to 3 months depending on your needs. Its dangerous to run out, you can die or have seizures, so you always keep pills on you just in case, and take the Baclofen orally. The device lasts 5 to 7 years.

It has come to this.

[Virginia]

Sunshine, I hate for you that it has come to this, but I am also hopeful that overall it will be beneficial. Maybe without some of the side effects of some of the other drugs you might not only feel better but also be able to do more. I truly hope so. I have been so impressed with all that you are already doing, as far as your step count, swimming and cooking.

[stillstANNding]

It’s a big step, Sunshine, but it sounds like the right step. I know you are very well informed.

Let us know when you are scheduled.

Best to you,
ANN

[agate]

Sounds as if this might mean an improvement in your life, Sunshine. I've noticed that there are a lot of people who have a baclofen pump installed, and I've been noticing that for years--so the medical providers must have a fair amount of experience and know-how about it. It sounds like an amazing device. Keeping my fingers crossed for this to work out for you!

[Sunshine 2]

I posted on a closed SPS Facebook page about the pump. The horror stories came out of course. But they will give me good questions to be armed with when I am evaluated.

For example, having osteoporosis, I wonder if they will be able to effectively anchor the lead on the vertebra.

Another patient had problems fighting infection and promptly got infection at the site of the surgery right after, and spiraled out o f control.

The successes, may not be posting, as they no longer are on the FB page looking for help and support, I figure.

Someone also mentioned that Klonopin has a longer half life than Ativan, a med I use to help control spasticity. I just PMd my neuro about that possibility while I await a pump evaluation.

[Ikoiko]

A good friend has had a baclofen pump for about 15 years and it has been just fine.

[Sunshine 2]

IT might take time to get in to the the doc. And there are reasons I may not be a candidate . Waiting, waiting.

[Sunshine 2]

UPDATE:’
I met with the doctor who is an anesthesiologist and pain management specialist. He has a very good reputation.
He explained the process to me.

He requires a psych eval on anyone he puts a pump in. So, I will be doing that telemedicine next week. The following week, I will be checked into the hospital lab very early in the morning. They set you on a bed in a gown (brrrr) and get you ready for the doctor. The doctor then comes in and injects the Baclofen into the spinal canal with a very fine needle, not the thick ones they use to dx MS by looking at spinal fluid. Since they are only putting the med in and not taking anything out, it should be much less painful, perhaps just uncomfortable.

Then I am there in bed for 8 hours. Every hour a PT comes in to assess muscle tone and who knows what else, to see your response to the med. Of course you are COVID masked the whole time (hate that, especially since the day before I will have IVIG and masked that whole day) but I can suck that up.

If you do not respond, you come back in two weeks and they do it again with a higher dose. If still no response you do it one more time 2 weeks hence with a higher dose. If no response, you do not qualify for the pump.

He said, most people only need one test.
So, then the surgery: I will do that in January, holidays don’t seem like a good time. I have to coordinate with Neuro how to step down the meds, you can’t do it all at once. So, I will still have SE’s during that time....unfortunately, he only does surgery in the afternoon. I don’t like that idea, and hope I am the first patient and he is running on time. I obviously cannot fast and be without water from midnight to afternoon!

Then you have bandages on your stomach and back for 3 days, no bathing allowed. Then they take them out and you have staples only for (a week?) and theyre removed.

This is pretty heavy duty, but I don’t see a way around it . ... could end up regretting this, but I have no crystal ball..

You go back every 3 months and they put more med in the pump with a needle. He said it doesn’t hurt. You must not miss that visit: can be dangerous to miss it.

[agate]

That's so good that you're willing to spend your time and energy on a procedure that will probably be helpful for you. We'll be keeping our fingers crossed--especially hoping that you'll need to have only the one session where the stuff gets injected.

Not fun but then around here we're strangers to fun quite often. It's "normal" people who are doing so much complaining about their fun being taken away. Since we weren't having a lot of fun anyway, going in for a tedious procedure could be viewed as just another bit of nonsense, maybe? Still, it's too bad this couldn't be easier for you.

[Earth Mother 2 Angels]

((((((Sunshine)))))) ~

This sounds like a very thorough analysis to determine whether you're a candidate for the pump, but rigorous for you too. Did you tell the doctor that you're having IVIg the day before you start the Baclofen injections? I don't know whether that would make a difference in anything, but it's a question I would ask.

Another thought ~ how about having home health nursing, when you come home? I know it's an outpatient procedure for you, but I do think you should have a nursing visit every day after your surgery to check your vitals, your incision, etc. The nurse can mask, gown, glove and take all necessary precautions to visit you. Probably less expensive and less germy than to be in the hospital. A nurse would be able to detect anything untoward and treat it, hopefully, saving you an ER trip.

If you can't have home health nursing, would it be possible to have a telemedicine conference each day with a nurse, or your physician, including a Zoom meeting where you can show your surgical area? I know that sounds crazy, but I just want you to have access to medical professionals after the procedure.

I can't even count the millions of times in my life, when I needed professional medical assistance, but I ended up taking one or both of my sons to ER instead. Things are changing rapidly now, so please take advantage of whatever help you can get in your home or virtually. It's something you should start setting up as soon as next week.

When I read reviews for products I purchase, I read the 5 star and the 1 star reviews. I want to know about any flaws or faults as well as successes. The same is true, when I research physicians, plumbers, etc. And as we know, it is always helpful to hear from others, who have the same situation, and their outcomes. It's one reason why we're here at BT.

Having a plan and support in place relieves a tremendous amount of stress, which is why I am offering these suggestions.

Sending healing, strengthening prayers your way ~

Love & Light,



Rose

*Virtual Hugs Are Germ-Free!

[Virginia]

Sunshine, it sounds tedious at best, but I am hopeful for a good outcome for you and that you will be able to get off some of your other meds. I feel just slightly better because I do remember some people on here talking about having a baclofen pump some time ago. It seems that they were doing o.k. with it or I think I would have noticed. Will definitely have you in my prayers and thoughts.

Edited to add: Barring a home health nurse could your maid work more than one day and stay with you a few days the week you have it done?

[stillstANNding]

This sounds very promising, Sunshine.

I’m sorry you’ll have to taper off the baclofen. Can you take something short acting like oxazepam to help? What about tizanidine? In any case, I hope they help with the management of your spasticity in that interim period.

Best to you,
ANN

[Sunshine 2]

All good suggestions. My DH will be off for the Trial next week and my housekeeper/friend comes the next day as usual.
It is the post surgery, likely in mid January where I will need help for several days. I think it will be a combo of DH being off of work two of the days, and me hiring a Home Health Aide, or going through the doc office and getting one for free from Medicare.I have done that before for PT and bladder issues. I know of an excellent agency.

I will need someone to take care of me, bathing me, making me food, possibly for one day. The last day my housekeeper friend will be able to be with me.

[Earth Mother 2 Angels]

((((((Sunshine)))))) ~

Good for you for planning ahead for your needs. It sounds like you will have wonderful care from DH and your housekeeper/friend. Medicare should cover a home health aide or an LVN or RN, depending upon your need. If you are on service with an agency, you should be able to have a nurse visit, if it is necessary. You can ask your physician to specify the kind of medical support you might need at home.

Our agency always sent a nurse out to our home for assessment, intake and setting up a care plan. Home health aides can't do that, so you might be able to have a nurse the first day when you come home.

If you've been a patient previously with the agency, you might call up your "team leader" at the agency, let her/him know about the pump, and ask what services they could provide you. It's always safest to plan in advance, but with COVID, it's important. The agency may be strapped for aides and nurses, or they may have strict policies about providing home care.

Keeping you in my prayers ~

Love & Light,



Rose

*Virtual Hugs Are Germ-Free!

[Sunshine 2]

Good Advice. I will be seeing the doc next Thursday for the LP and will ask the drill post surgery when it is done sometime in January.