Chirari Malformation and working out

[mcwhite722]

Hi, I am a 15 yr old girl who just got diagnosed with Chirari. My doctor doesn't want me power lifting any more, but that is the only way I relieve stress is by working out. The doctor says I have synix (the stuff in my spinal cord) and he sorta wants to operate but I really don't want surgery. And advice on surgery or not? And what work outs I can do?

[sherimom]

I'm sure it's hard for your mom too right now. It took me a little bit to do some research (which is when I found this group) and think it through.

I hope when she is ready she'll check in here as there is so much support here.

[sherimom]

Thanks for sharing that - I'm going to be sure to pass it on to my son. He has been trying to figure out which things he can and can't do. At this point he is putting together some things and will email it to the specialist to see which things he feels are appropriate.

I know he has told me, just prior to the major incident that sent us back to a new NS, that he is also very cautious in lifting. Like you, if he feels funny at all, has any symptoms, he also stops. This NS did NOT rule out lifting for him either. He did say that he needs to take a temporary break while we figure it out.

This is a controversial issue for many and each case is so different. I think a lot depends on what symptoms people have, surgical history, etc... and how important to them the activity is.

I believe he returned to his activities so quickly was due to his age, his physical condition, determination, and that he did NOT have any other associated issues. Thanks again,
Sherimom

[selmaS]

  Thanks for sharing that....many with chiari r dx'd by accident or when looking for something else.....none of us expects this dx or knows what it is...

Know that u r in a good place for support and know u r not alone in all this.

Keep asking questions : )

[mcwhite722]

Thanks! I'm really glad I found this site because y'all are full of information. I'm going to try to get my mom on here but this is a touchy topic for her so we will see.

[mcwhite722]

We came upon this as an accident. My back had been hurting for about a month and a half (and I wasn't lifting during that time) so he sent me to get a MRI on the middle of my back. But even when it is just the middle of your back it shows the upper part too and the radiologist saw what looked like chiari but nothing actually wrong with my back. So he told my doctor to have me come in to see if I have this and what do you know, here we are.

[SilentSong101]

would stop lifting at this point....it could help your health a lot in the long run...seriously, i know it hurts a lot right now, but think long term.

I know this has been a huge struggle for me, as exercise has always been how I relieve stress, and am physically able to sleep at night. I wonder if there might be some other sports that put less strain on the neck/back/head that you might be able to take up. For example, my docter (who yes, is a Chiari specialist) has recommended that I don't lift has approved me to do kickboxing (though, he may not while having a syrinx...im not sure). While most people here would recommend against a sport like kickboxing....I physically need it...and despite it being a contact sport if you train well enough and work hard enough you really dont get much impact at all (during classes you dont get any actually), but you get both a work out and the stress relief of hitting something...

like I said, many people here would not agree with me on this, but it is my opinion...you can pm me if you like too.

[SilentSong101]

This is a complicated subject here....I am a chiarian who has done lifting, will most likely continue to do lifting in the future and may believe that is it beneficial...if done carefully and correctly. Most people here will veto what I am saying...and I am not a doctor, so do not take my thoughts as medical advice.

I have found that a more I work out, the stronger I get and thus the more resilient I become to my symptoms, because I am stronger I have found things that bother most chiarians bother me less as a result...that being said...lifting as a chiarian is risky, and I have done my lifting knowing that full well. I have also developed a system of working out that allows me to work with my body...I have a rule, as soon as I feel my head start to feel funny or my body strain, it means I have to stop. Regardless of whether I am physically capable of it or not (I admit...sometimes I do not follow thisrule...but i should)

Because you already have a syrinx that puts you in another situation entirely. Honestly, if I had a syrinx I would stop at this point....you really don't want to make it worse and cause future health problems. I know the idea of having surgery is terrifying (I just had mine after finding out about my chiari nearly 4 years ago...it took me a long time to decide), but generally if a person has a syrinx surgery is recommended, and it may improve your long term health. Syrinx's can cause MAJOR problems - and no one wants that. Surgery could help prevent them....it may in many cases even help the syrinx to go away. Like I said...I woul

[sherimom]

You can also send me a private message if you'd like to.

[sherimom]

You should talk to my son! He is now 18 and had his surgery at 15 years old. He's having some problems again right now and the doctor he is now seeing told him no more weight lifting too. It's driving him (and me!) crazy right now!
But the doctor told him no lifting for three months while we figure this out, he may need to have another surgery but we don't know yet. This is the third time he's had to stop a sport because of the chiari.

I KNOW how important lifting is for him (he also works at the gym) and he also relies on this for stress relief....and this just stinks for him and for you right now. As much as you probably don't want to hear it, it really is better for now NOT to lift if that is what your doctor is saying. You can always talk to your doctor about returning to it later - some doctors will allow it, others won't, and I'm sure your mom will have an opinion as well.

But, until it is okay'd by the doctors and your parents, you should know you can have some really bad problems if you keep going right now. The problems you could possibly cause could be much worse than what is going on right now.

As far as the surgery, my son did well with it, he had 17 mm herniation (which is on the larger end of these) and no syrinx. He was actually back to school within three weeks after his surgery and started sports again maybe six months or so after that.

I hope this helps. Ask a lot of questions, ask your doctor what types of work outs are okay and not okay. Hang in there!!
Sherimom

[selmaS]

  Hi and welcome to the Chiari forum.

U really should not lift, I know u like it and it helps u release stress, but it will also cause u more pain and u can make ur condition worse as well.

A syrinx is a cyst that fills with CSF, and it can continue to grow, as it does it puts pressure on ur spinal cord and the nerves, if left untreated it can cause perm nerve damage.

A complete CSF obstruction can cause u to have drop attacks, vision, issues, incontinence, HA's,numbness, tingling,ringing in the ears, ....and so much more.

U did not mention how ur Drs came to test u for this, what was going on that u had the MRI?

[Rylanesmom]

No heavy lifting as it can make your chiari worse and you already have a syrinx.  It is time to seek the opinion of a chiari specialist...it truly makes a huge difference.  Have your Mom join our site too there are a lot of us on here:) you will need checked for related conditions as well.  Hugs and prayers...follow the drs orders and take it easy