Chiari Malformation Community
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Avatar universal

Pre-Surgery Nerves...

Hey everyone.  I'm a young actor in LA, and I'm just looking for some support, and stumbled on this website...  I'm having decompression surgery on Friday, and just felt like trying to talk to someone who's gone thru this already.  Some of the posts are very encouraging here, others are quite terrifying lol.

All my life I've had random headaches, and I've had the occasional bladder problem (I guess specifically, it's "retention", where I can never quite empty completely, and often feel like I have to go).  The retention and headaches seem to come and go, and can act up during stressful times.

Back in late August of 09, I started getting numbness all over my body.  More of a pins-and-needly feeling I guess.  It would be in my arms and legs.  I went to the clinic and they said it was stress, but if it continued to come back.  Sure enough, weeks later it seemed to be happening more frequently, so I went back, and they referred me to a neurologist.  He first said I seem fine and normal, and it could very well be stress, and to see what happens over the next few weeks.  One evening, I was at a lecture, and my face went numb and my vision blurred a bit (that was scary).  With that note, the neurologist had me go get some MRI's, and upon receiving them, he said he thought I might have Chiari Malformation type 1.

A side note, I'm very much in to working out.  And throughout spring of 09 til the symptoms started, I was really pushing myself at the gym, and it was GREAT!  I was getting stronger, looking cut, gaining some mass, and then BAM these symptoms started.

The neurologist said he believes it's been present my whole life, but the heavy working out added enough stress to trigger the major symptoms.  At that point, he suggested I stop working out entirely until I find out what's going on (and I haven't worked out since, which is super depressing.)

I would also randomly go though bouts of fatigue, and just be tired for a week or two at a time, no matter how much sleep I got, and then it would just go away.

My muscles feel very weak frequently; I can't brush my teeth without my arm getting tired, and some muscles will just feel sore or super stretched even though I'm not doing anything.

On occasion, my vision will blur.  (Also note, I've been nearsighted since 5th grade but had LASIK eye surgery to correct it about 6 years ago).

The neurologist referred me to a neurosurgeon to get a 2nd opinion and talk about options for treatment.  Both the neurologist and surgeon said I caught it fairly early.  I have a small syrinx down the length of my spine.

The surgeon said my brain is basically too big for my head, and the weight of my brain is causing the back end to sag down, causing the tonsils of the cerebellum to put pressure on my spinal cord, causing a lot of the symptoms I have.  There is a "log jam" in the lower brain that is causing blockage of the CSF, and since it can't get to the rest of my brain, some of it is being shot down into my spine, causing the syrinx.

After some discussions and whatnot he recommended the decompression surgery, and said he might remove a slight part of the cerebellum as well (this idea is quite scary to me, but he says it's not a problem).

To add more nerves to the whole thing, this is the SECOND attempt at surgery.  I was scheduled to go in February, was all set and cleared to go, I'm hooked up to all sorts of tubes, they knock me out, shave my head, and find a rash with bumps on my head where they need to cut.  Worried it was an infection, they cancelled the surgery.  After a visit to the dermatologist, turns out I have eczema back there, and while luckily it's nothing to worry about in terms of surgery, I had to wait for another chance at surgery for another month.

So, I've since had the time to add more worry about getting cancelled again and what not, and stumbled on this site while looking around.  Perhaps not the greatest idea since I've read some tough stories...

But, provided all goes well with the surgery, what can I expect afterward?

Will I be able to get back to working out soon?
Will I still be able to do all of my film acting stuff?
What are the effects years down the line?  In 2015 or 2020, where will I likely be with my health?

Luckily, I'm young (24), and in great health otherwise.  I don't drink, don't smoke, and before this whole ordeal, excercised regularly.

Any thoughts or advice are much appreciated.  And much appreciation to anyone who took the time to read all of this...

I'm doing ok I think with keeping myself calm, but this is such a nerve-wracking experience, and the worst ideas pop into your head about what could go wrong.

Thanks for any support.  And I hope you're all doing well.
13 Responses
620923 tn?1452919248
Hi and welcome to the chiari forum.

Well, for starters u want to know if u can get back to working out soon...well from my own experience and what u consider soon....I would say most likely not soon....but, since u r young and healthy u have a better chance at doing so quicker than I would.....(age diff)

Since I just had my surgery in May, I have no idea where I will be in yrs down the line...it all depends on related issues and if u have ne...do u know were u checked for other related conditions like a syrinx, tethered cord, DDD, EDS,PTC,....even sleep apnea....we r prone to autoimmune and connective tissue issues so all these combined may have an affect on how  well and long it takes u to heal and what u will be able to do afterward.

Most of us do have a journal with our "story" ...just click on our name to see if that person has their's posted.

After surgery listen to ur body and go slowly...don't rush to get back to things....

I am sure ur NS has given u some general type of guideline as to what to expect......just remember we r all diff and u may have a totally diff experience than neone else here...and that is normal.....

May we ask who is doing ur surgery?....please feel free to add ur NS to our Thread to help others still searching for a dr......

I pray all goes well for u on Friday and that u come back and post updates on ur progress.

In the meantime....we r happy to add u to our chiari family, sorry for the reason u had to seek us out.

Avatar universal
Thanks for the welcome selma :)

I had so many MRI's done, and the only phrases my NS talked about were Arnold-Chiari type 1, and syrinx.  The syrinx is apparently very small, but, the MRI was done back in November, so I don't know if it could have grown in the last 4 months.

My biggest concern is my acting career.  If I can't go hardcore with the working out, that's not all bad, but I'm hoping I can still do an action/adventure movie whenever the opportunity arises!

Thanks for the support, it's so nice to know I'm not the only one who is going thru this kind of stuff, although it stinks that that means there are many people having health problems.

But hey, strength in numbers :)
620923 tn?1452919248
Yeah, the MRI''s can seem to be never ending, Brain, cervical, thoracic and lumbar...then the CINE MRI....and sometimes they redo an area that was done already to include contrast or to take diff slices and a diff magnification.....diff MRI machines have diff abilities to get more in dept detail.....and I am all for the NS having all the info they need : )

All I can tell u and neone can tell u is only time will tell what u will be able to do after surgery and how soon after.....but u do have ur age and good health and ur fitness routine on ur side.

U r sooo right, and this forum has the best group of people u'd ever want to meet : )

1179332 tn?1297482590
Hello and Welcome!

Our stories are alike in that both our symptoms got a lot worse after going hardcore on exercise. I was going to my Dr repeatedle for symptoms like you mentioned and she kept telling me it was stress and that I should go back to working out. So, trying to "deal with the stress" that is what I did and it made things so much worse!!

I also have exactly the same muscle problems as you...I have the same problems with brushing my hair or holding my arms up in the shower to wash my hair. The feeling was very hard to explain...it was a weakness for sure but it seemed to be more of a sustaining weakness. For example, I could lift a weight but don't ask to to keep my arms up in the air for any length of time. The problem with getting dr's to understand though was that all the tests they do only measure the initial strength and not the strenght to sustain. My muscles always felt semi cramped and sore like they'd been overworked. It sounds like we have some of the same experiences, therefore I am really glad to hear you are having surgery. I was misdiagnosed and ended up having very spastic, painful legs that made it hard to walk. It was a loooong way from the days of running and weight lifting.

Now for the after surgery side....my legs improved greatly almost right after surgery. Honestly for two months I wouldn't think about doing much of anything other than relaxing and letting your body repair. After that, I went to Physiotherapy to help retrain and strengthen my muscles and it has been great for me! They have just started me on some easy core exercises and I can actually see my abs coming back!! So, you will need to take it slow and you may have to make some changes on the type of workout you do but I have complete faith that down the road we will both be on a good exercise routine.

As for acting and anything else you would like to pursue...again, I think the most important thing is to make sure that you give your body the time it needs first. It can take up to two years to have nerves fully repair...and the better you let your body repair the better chance you have to getting back to what you want to do. Most people experience setbacks when they try to get up and do too much too early, I know I did. I have found the most important thing post surgery is to just keep on trying to do what is best for your body, whether that is PT, what you eat, or how much rest you get.
As far as what is down the road...I can't really say either..I only had my surgery at the end of December. However, I think a positive attitude and a healthy lifestyle definitely may help in keeping your health up!
I will be thinking of you on your surgery date....take care of yourself!
Avatar universal
Selma, yeah I had all of those done... a number of hours in that machine.  Good time to kinda zone out though lol.

Carolyn, I wish you didn't have a similar story, because that would mean you didn't have to go thru any of it, but it's extra reassuring to hear someone who seems to have had the same problems be ok and upbeat about their post surgery experiences.

I suppose the disconcerting part for me is the idea that it might be necessary to cut away part of my brain (very small part, but still).  I mean, ANY part of the brain would be disturbing, but since it's the part that controls motor skills and balance...

I suppose the best thing I can do is just not worry about it, and be ready to recover, whatever it takes.

Many thanks to both of you.  I'll definitely post about the post stuff when I can.
1041839 tn?1278685446
Hi and welcome! Sorry i cant give you any post surgery advice because I haven't had decompression yet, mine will be in may. Yes, there are scary stories out there, but there are good and encouraging ones too! It sounds to me like you have the biggest part of recovery down ... determination! The other thing is TAKE IT SLOW! I have seen more people have set backs because they did too much too fast, but you will be fine! We will all be praying and sending good vibes for surgery and recovery! Blessings ~ Shannon
1236570 tn?1276742125
I can totally relate to all the testing, I suppose thats one advantage to having narclepsy. I quite literally sleep thru all my MRIs!

I also know what you mean about sustaining your strength. I can lift my arms out in front of my just fine (like at the Dr.s when they tell you to push up against their hand or they say don't let me push your arm down) I can do it just fine for the half a second they ask you to do it for but if they were to ask me to do i for longer than a minute or so... wells there's just no way I could!

To soon2bzipperhead: I am contemplating surgery myself so I hope all goes well and keep us posted as to how you're doing
1179332 tn?1297482590
Soon2bZipper...I can understand that part being disconcerting...I didn't have any brain cut away, just the decompression, duraplasty and laminectomy. I am just curious on why the may have to cut part of the brain out? I imagine that you have a rather large herniation and that is why? I have heard stories of people that have had the tonsils been cauterized and done just fine so hopefully that will make you feel better. Or, are you referring to having the duraplasty? (Where they open up the outer lining of the brain to make more room and then sew a patch over). I was scared about the duraplasty too b/c they actually touched the brain but as I told you...it turned out fine for me. You have to remember there are two other layers under that one before you actually get to the brain and the first layer is a tough one. I have heard of some people having leaks from the patch but it is fixable...You are right though, try to put all those thoughts out of your head b/c thinking about it causes you to deal with stress that you may never have to deal with.
I know the pre-surgery jitters are tough...so keep talking to us here and we will keep boosting you up :)

Stephanie- Isn't the muscle weakness the most frustrating thing? The other thing that ticked me off is when they do the EMG, they do it lying down and all of my legs problems were 10Xs worse when I was putting weight on them!! That is why my NS told me not to put any stock into what the results are b/c they weren't the correct tests for what we have.
My doctor noticed what I was saying b/c she told me to push up on her hands with my thighs and she held it for a few secs and my whole body started shaking and wouldn't stop even after I relaxed and she was like "wow!"

620923 tn?1452919248
Carolyn...many NS's will cut the tonsils off.....some cauterize them...which is what I had done....I do not understand the removal either...but have heard that they r out there doing it....
Avatar universal
As far as I understand it, and I just talked to my NS briefly (he called me inbetween surgeries on his break), he says it's not like most people's Arnold-Chiari where the tonsils are the thing causing the problem, it's just the area of my brain where the cerebellum is doesn't have enough room.  He mentioned if needed, I would have a duraplasty, but he says he has to get in there first to see if it's necessary.  I had explained to him that I found an online community and was trying to discuss this stuff with other patients, and he said, keep in mind the specific Chiari Malformation everyone has; I specifically have type 1, which he says many people have type 2?

He couldn't recall the exact size of my syrinx, but he had said it was very small.

Stephanie, does it come and go for you as well?  I recall when my symptoms first started, one day, I couldn't hold 2 grocery bags climbing up the stairs without my arms getting really tired; the next day, I had 10 bags in each hand and was fine.

Carolyn, the jitters are probably the worst part at the moment lol.  But I just have to know that regardless, I'll get back to good health.  One post had a link to a football player story in it.  If he can get back to potentially being drafted in the NFL after having surgery for Chiari, I'm quite confident I can get back to acting ASAP (while taking it easy of course).

Hope everyone is doing well and feeling healthy!!
1236570 tn?1276742125
Yes, my symptoms come and go. And since I have joined this forum it seems like that is pretty common for us. Mine usually last for weeks at a time and the disappear for quite a while. But this particular round has been the worst yet (with all kinds of new symptoms) and has been going on for about 3 months now.

As for the different types of chiari, type I is the most common. It is my understanding that if you have type 2 you'd know it early in life b/c it is so severe that the symptoms are also very extreme. If I'm not mistaken I think that type 2 typically involves the hindbrain as well as the cerebellum. (Carolyn and Selma pls correct me if I'm wrong)
620923 tn?1452919248
U r right...most chiarians have type I....few have II as u said this would be detected at birth.....most of us have had symptoms on and off for yrs and missdx'd....and it takes them getting worse or being involved in an MVA to get a MRI to know the full extent of what has really been plaguing us for yrs.
Type I involves the extension of the cerebellar tonsils (the lower part of the cerebellum) into the foramen magnum, without involving the brain stem. Normally, only the spinal cord passes through this opening. Type I  — is the most common form of CM and is usually first noticed in adolescence or adulthood, often by accident during an examination for another condition. Type I is the only type of CM that can be acquired.

Type II, also called classic CM, involves the extension of both cerebellar and brain stem tissue into the foramen magnum.  Also, the cerebellar vermis (the nerve tissue that connects the two halves of the cerebellum) may be only partially complete or absent.  Type II is usually accompanied by a myelomeningocele — a form of spina bifida that occurs when the spinal canal and backbone do not close before birth, causing the spinal cord and its protective membrane to protrude through a sac-like opening in the back.  A myelomeningocele usually results in partial or complete paralysis of the area below the spinal opening.  The term Arnold-Chiari malformation (named after two pioneering researchers) is specific to Type II malformations.
1179332 tn?1297482590
Sounds like me as well...maybe that's why we have things in common!!

Although I did have the tonsils herniated, the area that my NS pointed out to me that was restricting the fluid was actually where the cerebellum was squished against the skull just before the foramen magnum. That is what caused the most concern for him. I think that is why he just went ahead and did all 3, to be on the safe side.

My muscle weakness in the early days did come and go too...would usually last a week or so and then I'd have some relief. That is why I would hum and haw about seeing my DR b/c by the time the appt. came I would feel better. However, I found everytime it came back it got a little worse and until finally it was here to stay permanently. I always found I would have some worse days than others and that it would "travel", for two days my right leg would be the worst and then it would switch to bother my left leg...the same thing with my arms. I am still finding that now too. Somedays my leg is fine to drive and other days it feels weak and lazy.

I'm glad to hear that you have the positive attitude to take you through...it really helps!
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