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Chiari Malformation Community
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Avatar universal

Chiari surgery question

Hello,
I was diagnosed December 2013 with a 10mm herniation.  Like other people I've read about, the MRI was looking for something else and happened upon it.  It did explain most of the symptoms I've been having, and others that I've had my entire life.  The MRI was for an endocrinologist (checking pituitary), he wasn't aware of the condition and recommended that I see a neurosurgeon.  Last week I had 3 more MRI's, the ones most often talked about here, and the results were as common as I've read about; no syrinx, no CSF flow blockage, although I think they said it's 11mm, not 10mm (of course I know that it's hard to measure like that!).  The dr was great, he took some time and explained to me what was going on in my head... He said there was lots of "crowding in there" and I'm a candidate for surgery.

Since December I've been paying attention more to what my body's telling me.  What brought this whole thing on was having vision problems intermittently and had a major double vision/blurry episode while I was driving my family.  I decided that it's too dangerous not to do something.  GP sent me to endocrinologist who sent me to a NS, all so quickly that I feel like everything is moving too fast. I'm stuck because I've been living with most of the symptoms my entire life and have done so without intervention.  I eat ibuprofen and aleve like candy these days, though.  The struggle within is me asking myself, am I getting worse or am I just paying attention now?  And sure enough, the past few weeks I swear my headaches have grown, I have to stop everything and lay down (not to mention more ringing in ears, neck pain, etc). The past couple of days things seemed to let up.  So much so I was relieved to no end!  But last night I reached down from my bed to pick something up and immediately after I had a headache, and I still have it today.  So, I know my issues aren't even close to what some experience but even so, do they actually warrant the surgery yet?  Unfortunately, now that I know there's something wrong in my head (it really is in my head) I think that I'll keep getting worse until I capitulate and have the surgery.  I hate feeling like I have a choice in this.  Why don't they just say  GET SURGERY NOW?!  Thanks for your time, M
11 Responses
620923 tn?1452919248
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

First ur ringing in ur ears could be exacerbated  by the use of NSAIDS....

ALL the Drs will leave this decision up to u....unless u are having a life threatening issue.

Next get the opinion from a few known Chiari specialists not just a NS as it makes a big difference...

Have they ruled out tethered cord, disk issues, ICP, POTS, ehlers-danlos., sleep apnea? Many of the related conditions have the same symptoms so it is hard to know what condition is causing the pains....

I  don't understand the statement it being crowded  if the flow is ok ....not sure what is meant by that...did they mention nething with ur odontoid?

There are ways to prevent a flare up of symptoms, certain activities to avoid....listen to ur body to add to the list we compiled in the Health Pages....as u may be able to do some the list says avoid with no issues,but issues from things possibly not on the list....

Avatar universal
I will ask the dr as soon as I can about the list of things you mentioned. I should have thought out my question/statement better. The crowding comment was because the MRI's showed that my issues were obvious, that there wasn't much room at all for the cerebellum and you can literally see how it's pushing into the cord, that sort of thing. At least that's what I got from it. Yes, I do have sleep apnea. Are you saying that it is the apnea causing this? Also, I haven't had any NSAID for a few days and I didn't mention it to him because it's something I've always had. The MRI that is for the spinal fluid flowing, the thing they use with your pulse, that report from the lab or whomever looks at them wrote the values and I looked them up online. They are within normal range which I believe means that I don't have an obstruction which is causing a blockage. A lot of my issues are things I've always dealt with as just the way I am. The vision and lengthening of headache times are what brought me in. Unsteadiness, clumsiness, other similar issues I've just dealt with. I was raised with 4 brothers, we played hard, there was no complaining in my family. I thought that ears rung anyway, that the tingling sensations and jarring and neck pain were from aging, that headaches from laughing, coughing, straining, etc. were normal up until 2 months ago. For all I know, they are.

The basic point I was so poorly making is that the dr said that I would benefit from the surgery now. He said that I could continue to deal with the symptoms but eventually I would need the surgery. Also, very important, that insurance would pay (I asked directly).  So I'm confused and wondering if anyone else has felt this way and if things are moving too quickly and last, did anyone get the surgery with my symptoms?
620923 tn?1452919248
COMMUNITY LEADER

  No, I meant Chiari is causing the sleep apnea...not many Drs are aware of the connection .

The ringing is a Chiari issue as well, but can worsen with NSAIDS....and I know all too well how we ALL do not realize what are symptoms bcuz we have always had them....lol...

SO u may have a compression of ur brain stem......

I had many of ur symptoms and a few others....the worse ones I had were drop attacks and one in '07 lead to injuries that required surgery...so my Drs pushed for answers and in Feb of '08 I got my Chiari DX....but I took my time researching Chiari and Drs and did not have surgery until May '09.

It does seem to move too fast and if u can manage I would suggest u take ur time and find teh right Dr for u.....
Avatar universal
Thank you so much. I see how many people you help and I appreciate your honesty. I see my gp tomorrow for a followup and to discuss things. I like the ns a lot. I trust he has the skills. I just feel like everything is flying by...
620923 tn?1452919248
COMMUNITY LEADER

  I know just how u feel....and u can see 4 Drs and get 4 diff opinions....so the decision is always going to be urs.....but the more u educate urself, u will know when the time and Dr is right for u.
Avatar universal
I spoke with my GP and he said that whereas he can't tell me to do it, he said given the situation he would understand if I did.  I just laughed.  It seems so ridiculous but I understand that all of us have different symptoms and it's hard to give a linear answer.  I went ahead and scheduled my surgery for the 26th of this month.  Of course the only thing I'm really concerned about is having a scar (and death of course).
Thanks again, Selma.  I'm sure I'll have more questions soon.
m
620923 tn?1452919248
COMMUNITY LEADER

  Congratulations on making the decision.....if u would like a Prayer thread posted for ur surgery please add ur name to the Surgery Date thread....

Wishing u all the best.
Avatar universal
Hi SelmaS,
I'm nearing 1 year post surgery and I am doing well. I just wanted to follow up and say thank you for your patience and kindness. I am blessed to no end. Most of my symptoms have subsided. I have a stiff neck but nothing I can't handle.
Take care,
Mike
620923 tn?1452919248
COMMUNITY LEADER

  I am so happy for you Mike.....know with time you should continue to see benefits from surgery..

  For the tiff neck use heat for 15 mins, do the neck exercises and heat after for another 15 mins....this is what helped my stiff neck.....

  Keep us posted on your recovery and your life  <3
246139 tn?1424375573
Thank you Mike for an update! That is very encouraging.
Avatar universal
That's amazing, Mike!
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