Think Twice if you have mild MS

Annbanan · Post by **Annbanan** » Tue Oct 19, 2010 2:01 pm

I would like to advise everyone planning on getting liberation treatment to please think it through well. If you are in the advanced stages of MS I would do it, but if you are like me, with minimal symptoms and trying to 'get things fixed early', I would advise caution.

Since returning from another country (I don't want to name the country because they did everything right) and liberation treatment, I have not been back to work....of course I only had the procedure last Thursday with three other individuals from Canada (who all had good results), but I am unable to funtion as I was before. I have been in bed since I returned. I feel we were well taken care of and the procedure was done professionally by great doctors, but you never know what will happen afterwards....I was fine for two days until I got home and I am assuming that my jugulars have re-blocked. Now I regret my rush in getting the procedure done knowing full well there would be no help available in Canada. I do not know where to turn now. I cannot afford another trip to a foreign country for more treatment and right now I am not able to work, which I had no trouble doing before. I thought I was doing the smart thing by getting treatment early, but myself and my husband are regretting that decision.....now I am not sure what the future holds for me at all and I am at a very low point in my life. I cannot keep my eyes open as I type this .

Thanks for listening.

Post by **jimmylegs** » Tue Oct 19, 2010 2:12 pm

ann, very sorry to hear your news and i hope you feel better soon.

concerned · Post by **concerned** » Tue Oct 19, 2010 2:12 pm

This is exactly the kind of thing I think people need to hear.

When I first started posting here a woman asked "I have no money and am too disabled to work. Should I get a $10,000 bank loan and fly overseas and get this done?" to which someone replied, "Do it! You'll never regret it!"

That's what encouraged me to continue posting here.

Annbanan · Post by **Annbanan** » Tue Oct 19, 2010 2:23 pm

Like I said, if you're already in bad condition and there is no worse you can get I would do it....but as I was doing relatively fine and had a borderline diagnosis for MS I would not do it again....I was hoping to stop everything in its tracks but I seemed to have made matters worse. I just hope this is temporary and that I can get back to work to pay off my liberation treatment debts.

Jugular · Post by **Jugular** » Tue Oct 19, 2010 2:40 pm

That's aweful, I hope you turn a corner and get back at least to the way you were or better soon. Are you able to say without disclosing where you had this done, what it was exactly that you had done - i.e. balloon or stents etc?

Cece · Post by **Cece** » Tue Oct 19, 2010 2:43 pm

This is a follow-up care issue. The problem is not the mild MS, it's that it's being done as a one-shot treatment with no safety net for someone who restenoses.

Annbanan, have you been in contact with your doctor who performed the treatment? Are you on anticoagulants? Have you seen a neurologist? If you are on anticoagulants, please inform your neurologist if he/she diagnoses this as an MS relapse and prescribes steroids, there is some interaction there. Would traveling to the US for follow-up care be a possibility or is it completely not possible now?

MSbutnotMS · Post by **MSbutnotMS** » Tue Oct 19, 2010 2:43 pm

First of all I would like to say that I am very sorry to hear about your situation. I wish that there was no such thing as MS, but those of us that live with it every day know the reality of it.
Secondly everyone should weigh the pros and cons very carefully and become as knowledgeable about the risk/reward as possible. My situation sounds very much the same as yours. My symptoms are very mild and have been for 9 years now. I had the procedure done on Friday October 15 in Albany. I know it has only been 4 days but the results so far are fantastic. IF everyone got the same results as me, then everyone should get it done. Unfortunately that is not the case.
Once again, my heart goes out to you. Stay strong. One day someone will be able to figure all this stuff out.

blossom · Post by **blossom** » Tue Oct 19, 2010 2:44 pm

i hate to hear you are not doing well. hopefully, after you get rested you will be back to where you were and even better. i'm in pretty bad shape ppms i had the procedure. i wish i were one of those who benefited but not the case. i agree that early on msers should wait. my fear is clotting. is there someway you could get checked for clots? even if you got no stents maybe you could try to get that checked out. hang in there.

concerned · Post by **concerned** » Tue Oct 19, 2010 2:44 pm

I think that no matter whether you have mild or severe symptoms, if nothing happens, or worse, if you get worse, then I can see regretting it.

ikulo · Post by **ikulo** » Tue Oct 19, 2010 2:53 pm

Ann, thanks for sharing. Your situation sounds very similar to mine. I suspect there are many more people who have gotten worse after treatment, but they are just not coming forward.

Annbanan · Post by **Annbanan** » Tue Oct 19, 2010 3:15 pm

I did not have a stent as the doctor does not feel comfortable using them with their limited history in jugulars. I figured the biggest danger was with stents so didn't really fear this outcome happening at all. I am on blood thinners now-injections for 14 days and pills for 6 weeks.

I would consider going back to the same place for treatment again but financially I am not sure it is an option. Also, the doctor was doing a study so is not set up for a 'permanent business' as such.

Not sure what to do.

Interrupted · Post by **Interrupted** » Tue Oct 19, 2010 4:05 pm

Annbanan wrote:....of course I only had the procedure last Thursday with three other individuals from Canada (who all had good results), but I am unable to funtion as I was before. I have been in bed since I returned. I feel we were well taken care of and the procedure was done professionally by great doctors, but you never know what will happen afterwards....

Oof i'd give it a bit longer to be objective. I feel for you, I really do, i'm in the same situation and I only had the procedure two days before you. Possibly like you i'm disappointed everyone else had improvements and i've just come back feeling wiped out and WAY weaker than before BUT i'm not going to let feeling rubbish provoke my judgement and make me throw the barrier down at this point, I need to give it a few weeks. For anyone with MS, mild or otherwise, travelling to another country and putting yourself through surgery (minor or otherwise) is an awful lot of stress on our systems. If after a couple of weeks rest i'm still feeling the same, I genuinely feel only then will I have a good and reliable idea. You are warned that you may feel bad for a while afterwards and to be patient. Some do, some don't. Hopefully it will pass and the majority are not those who end up worse off (IMHO most likely from a related relapse caused by the stress of the procedure or over-doing it afterwards). As I said though, I totally understand, I feel awful, my neck hurts, my eyes hurt, and i'm just passed out asleep exhausted every day atm. Not fun.

x

Jugular · Post by **Jugular** » Tue Oct 19, 2010 4:06 pm

I would go see your family doctor who can at least review your medication and send you for blood work etc. You have to rule out a reaction to the medication that you are taking. From there if a clot is indeed suspected, that's a medical condition for which they have to treat you (unlike CCSVI). Once again, your family physician maybe able to refer you to someone. If still stuck, you can get an MRV and Doppler done in Canada or the US for far less than the procedure so at least you can see what might be wrong.

scorpion · Post by **scorpion** » Tue Oct 19, 2010 4:19 pm

Cece wrote:This is a follow-up care issue. The problem is not the mild MS, it's that it's being done as a one-shot treatment with no safety net for someone who restenoses.

Annbanan, have you been in contact with your doctor who performed the treatment? Are you on anticoagulants? Have you seen a neurologist? If you are on anticoagulants, please inform your neurologist if he/she diagnoses this as an MS relapse and prescribes steroids, there is some interaction there. Would traveling to the US for follow-up care be a possibility or is it completely not possible now?

You assume right away that when someone does worse after treatment it is due to restenoses. The other possibilty is that the liberation procedure has no therapeutic value and can, like any surgery, make people feel like crap.

annbana good luck and I hope you feel better soon.

Post by **jimmylegs** » Tue Oct 19, 2010 4:33 pm

let's not dichotomize please folks. no need to polarize the debate again, it's already been done.

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Think Twice if you have mild MS

Think Twice if you have mild MS

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