Surgery, or no surgery?

[toomuchbrain]

Hi guys! I'm new here, and I've been gathering lots of great information from this site. I'm so grateful I've found it.

I have a question, but first, here is some background.
I've been having migraines for about 4 years now. I've tried two prescription medications and one herbal remedy to try and prevent them. With all three, the headaches started to seep through at some point. I finally got an MRI, and was told I have a mild case of Chiari I. When I started to do research, I realized I have more symptoms that could be explained by this : tingling hands/shoulder, pain in shoulder and back, tingling legs, cramping/spasming in calf, stiff neck.
I saw a neurosurgeon, who recommended surgery. After tons of research, I'm still unsure of what to do. Surgery, or no surgery? My neurosurgeon said if left alone, it will get worse. So I'm wondering, do I have it now as a slightly preventative surgery, or wait? My quality of life is affected, but I can't decide by how much. I still function and go to work, but there are days when I have to cut back or cut out activities due to headaches. I don't miss much work, although I do miss a day occassionally. Mostly, I end up working a slower pace and going home to nap or lay on the couch for the rest of the night, like a potato. I also have mild/moderate headaches on a daily basis, mostly from sitting at the computer or laying on the couch. It seems the position I'm in makes things worse, and if I change, it gets better, if only slightly.
I'm worried I'm thinking things are worse than they really are. Not that I'm exaggerating on purpose, but maybe I want to get better so badly I'm thinking things are worse to have the surgery. On the other hand, reading about the surgery, and recovery, and possibly having more problems afterwards, I'm afraid of the surgery now.
I see my neurosurgeon again in a week, and I'm going to get a second opinion that same day. I have lots of questions for them both, but nothing that would help me decide.

So, I guess, I'm looking for some guidance or advice here. I know no one can tell me what to do, but all the advice I've come across is 'when it starts affecting your quality of life'. I understand that, but I'm unsure how to gauge that. I'm not active or social to start with, so I really don't have opportunities to miss out on much.

Thanks in advance everyone! You have all already been so helpful with previous posts, I've learned so much!

[selmaS]

  Hi and welcome to the Chiari forum.

Not everyone with Chiari needs surgery, and I say this, not all of us r or will be considered a surgical candidate...and a NS will offer surgery, cuz that is what they do...they do not dx, or offer a diff dx, u need that from a NL, and again y I say to get all the testing done b4 u consider surgery as there r related issues that can cause similar symptoms.

I am happy for u that u did not require surgery to this point, will u at some point, that is neones guess....

Have u had a MRI since ?

Ne new symptoms or issues? If not?...u r lucky...TSO is something that is very commonly dx'd with chiari...

I hope u continue to be able to continue with out major surgery.

[EricF]

Hi, I'm just seeing this thread now, and wondering what's the latest with folks.  8 or so years ago I was diagnosed with a CM with syrinx that's not too large.  I was experiencing some tingling in my fingers, but not much else except some cloudy-headedness after playing sports.  I went to two so-called reputable neurosurgeons about this, and was given the advice to have surgery in the next year.
At this point, 8 years later, I'm so glad that I did not choose the advice I was given.  That's not to say that everyone should do as I did, but for me invasive surgery was clearly not necessary.  Will I need surgery in the future?  I don't know.
Instead, I went with a suggestion of someone I knew.  I visited a wonderfully talented Osteopath in NYC, named Steven Weiss.  He did a simple Adson's test and found that I have Thoracic Outlet syndrome, a very managable condition that requires no surgery.  
I do believe that the CM and syrinx need to be monitored, getting an MRI on occasion to see if the syrinx gets larger.  
But I can't imagine, given the minimal symptoms that I could live with, going down the route of invasive surgery.  
Neurosurgeons, expert or not, are often myopic.  I encourage anyone  to seek varied healers for a complete assessment of the situation.  
I'm curious if anyone wants to take this thread up again.

[selmaS]

  I just think they r too rigid as to what is a symptom and what is not...their list is much shorter than the list we compiled...in fact we call ours a manefesto!!

[lydelia]

No doubt. If don't mention something on their specific little check lists, then they really don't much care.

[selmaS]

  Only problem is, they only feel it is important if it is a HA....ugh

[BetteH]

The HA being different than someone else's is so true. I am like SelmaS my HA's are more like head pains. When I strain in any way (sneezing, coughing etc. I feel like someone has hit me in the back of the head with a frying pan. Maybe we should tell our Dr.'s that we have head pain not a headache.

[toomuchbrain]

I'm with you on that, selma. It's taken a lot of reading and question asking to come to the realization all of our symptoms vary, sometimes quite a bit. That doesn't mean we don't have chiari or aren't suffering from it, it's just different than someone else's. That was really confusing for me, and sometimes still is!

[toomuchbrain]

I agree, my headaches are often from bending over, or if I already have one, it's made worse by bending and sometimes just moving. I seem to get a lot of different headaches, and in different locations. People think I'm nuts when I say 'it's not that kind of headache, it's different than yesterday's (or an hour ago's or whatever)'.

[selmaS]

  I really feel one of the biggest issues we have next to well informed and experienced Drs is the way they describe symptoms....I feel many r misleading.....

And next to that, is a standardized way to dx chiari.

  But that is me : )

[lydelia]

I'm glad you said that about the headaches too. Mine are like that. I sometimes get a full headache, but more often than not, the ones from bending over or something like that are the being stabbed in the head kind.

[selmaS]

  Hi...not at all,. we r all diff and will have diff symptoms and not all of us will have all of them.
Plus, I feel HA on straining may be a bit misleading...bcuz mine were more like  being poked with an ice pick for a few seconds...it doesn't last long...or develop into a HA as I would describe a HA, but it is pain in the head.

I would have to grab my head for those few seconds it can be that intense....but then it goes away....a diff HA may follow, but it is a bit diff.

    "selma"

[toomuchbrain]

Thanks for the responses, everyone! You've all given me a lot of food for thought.
I'm still not sure what I want to do, but I'm leaning towards having the surgery. Actually, I'm pretty sure that's where I will end up.

I still have a lot of nervousness, and questions, and fear. I hope to work through most of this before surgery. I know most of it will still be there, but I want to get as much resolved as I can. In fact, here's something else that has been bothering me: is it odd that I don't have headaches on straining? It seems to be a pretty common symptom. I have all different kind of headaches and migrianes, but not those. Am I odd for that?

[linnielou232]

I know how you feel I went 2 years of servere pain then I found this web site which helped me to decide to have the surgery.  I went through a lot this past year  because I did have problems after my surgery.  Ended up having 3 all together, but I would do it all again because over all I am better today than I was before surgery.  I say to you.  Ask yourself if your life is worth living the way it is because it doesn't get better.  Having Chairi I know for myself it didn't get better, but got worse very quickly.  I wish you the best of luck.  Follow your heart and you will help you make the right decison

[selmaS]

  Hi...there is no guarantee with this  or ne surgery especially major surgery which this is....there is no way to know how ur body will respond to the trauma of surgery or the meds...and drugs used.

Some that develop issues post op most likely would have developed those and more with out the surgery...

The main thing is to have the right Dr...so many with issues post op have had the wrong dr....research the dr, and get as much info b4 u say yes as possible.

"selma"

[sunnyset]

I'm interested in seeing what others say as I am in the same boat as you. I would not even consider surgery if I didn't need to, but I'm afraid that if I do nothing, it will get worse. But I'm afraid to get the surgery and have it make me worse, or do nothing at all.

[selmaS]

  Hi and welcome to the Chiari forum.

First, make sure ur NS is a true chiari specialist....u need one that does nothing but chiari and chiari related surgeries....not one that just does a few surgeries a yr.

Next, u need to know just how this is affecting ur overall health and not just symptoms...if u have a CSF obstruction u could have a syrinx already and if not one could develop...left untreated a syrinx can grow and impinge nerves to the point of perm nerve damage...so most surgery is to prevent progression of them forming as well as the tonsils herniating further.

  "selma"