Need your opinions please about the SURGERY

[Amanda_ACMI]

Hello Everyone,

I have posted on here a couple months ago, regarding surgery. I need however, some of your opinions, and reassurance.....

I wanted to ask, what drove each one of you to surgery? See, about 5 years back, when I actually found out I had the chiari, is when my symptoms were out of control. Of course at the point I was told no, you dont need surgery. Now, that Im in a bigger city, I had a few other health issues, and went to get those checked, when I did, they found out I had chiari, and did an MRI. Since then the focus has soley been on the chiari. And my werid symptom I was having was ruled out from chiari causing it. Now, the dr, Ive been seeing ( neurosurgeon) everytime I see this dr, says you need surgery, you need surgery. Ok, I wont deny I have issues, but here is my deal, are my issues bad enough to have surgery? I dont have a horrible headache everyday, I dont have strange neurological issues everyday. Its only if I put myself in a strenuous environment,  like a car trip 9 hours one way. Or a day of shopping on my feet for 8 hours non stop.

Were your symptoms so severe, that you were not functioning in everyday life? What drove you to have the surgery? Please, I am trying to decide for myself, is my life so awful that I need this surgery? They have me scheduled for March, and I just dont know....

Thank you all
Amanda

[linnielou232]

Every one has given you such good advice and we all know how scary and what a big decision this is to make.  I also suggest you get a 2nd oppion.  I actually had 3 before deciding because it was a hard decision to make.  When finally finding my NS  he asked me this question.  "Is this affecting you life, and can you keep living like this".  it was a definate no for me.  I had no life because I had such pressure pain that couldn't think straight.  As my NS said.  Have decompression surgery doesn't cure us unfortunally.  It just slow's it down and does give relief.  I know how difficult this decision is for you and my heart goes out to you, but you have to look at the pro's and con's as someone said.  I do have to say.  It took me 2 to 3 yr's to have this surgery and I do suffer nerve damage in the tongue and roof of the mouth which I wish I didn't have, but not can't change it,  just trying to adjust to life changing having Chairi.  I wish you the best in your decision.  Listen to your heart and it will lead you to where you need to go.  Your not along in this.  As  deadmemory said. "Once a Chairian, alway's a Chairian".  It is a life altering issue which with surgery or without it is something we all have to adjust our lives to.  Good luck

[selmaS]

  I did not have a syrinx, and had surgery to prevent one from forming...as I did have a CSF obstruction....it was a matter of time b4 one would have formed.

Many of us manage with these symptoms for yrs...all my life  as a matter of fact...and to me it is more how it affects our overall health., and our symptoms.

Also, bcuz u have a syrinx, ur symptoms may have been more manageable bcuz of the compression of the nerves, if the nerves r not working u can not feel the pain....so, that is not always the best way to look at when to have surgery...we do adjust and get use to many of the odd pains and issues that are symptoms and many times do not recognize them as such.

  JMHO

  "selma"

[sunnyset]

Amanda, I was diagnosed with Chiari after just a cervical spine MRI. From that they saw that I had a herniation and you can see from the MRI the syrinx as well. Like Selma mentioned, a syrinx indicates a csf flow issue. As part of my pre-op, my NS ordered me to get a full spine MRI as well as a csf flow study (cine) as well. My symptoms never progressed so I don't think I would have gotten the full spine and cine mri if I weren't opting for surgery as they probably weren't necessary. If I did not have a syrinx I would probably not get the surgery since my symptoms were manageable.

[selmaS]

  Sorry, I got a post from another member confused with one from u Amanda...u did not mention having a syrinx, so disregard my post about that.

[selmaS]

  Seeing u have a syrinx that is large or has grown, indicates a CSF flow issue and a CINE MRI would not be needed to check flow....

I do not want u to stress out about a test u may not have had, as sometimes there r good reasons y...and u have a good reason for that one.

U should get checked for EDS b4 u have surgery, as it can affect how u feel and heal post op. A Rheumatoid Dr should be able to check u for this.

   "selma"

[Amanda_ACMI]

So, your Dr, did other tests as Selma and Rylanesmom are describing above? This really concerns me, as the "only" tests I have had are the MRI and the eye exams... Thats it!

[sunnyset]

Hi Amanda. When I finally had insurance and was able to get an MRI, the radiologist told me that I had Chiari. When I followed up with an NS, he then told me that I also had syringomyelia. I've been making sure to monitor my symptoms. Other than the headaches and lightheadedness occasionally, nothing else really hurts. I have flown without any trouble, so I'm sure our two cases are nothing alike. Everyone's different.

Find an NS who knows what they are talking about, someone who can give you answers because it ***** to *not know*.

[selmaS]

  Sorry, IMHO that is not a chiari specialist...and I understand ur issues with flying, but, u need another opinion.

What did Rylanesmom mean by  u have a surgery date?Ok...I see u have a syrinx, a CINE MRI is not warranted bcuz u have the syrinx, they form when u have a CSF obstruction.....no need to check something that is obvious.

I now understand what  is going on, but I would want a 2nd opinion....and if ur syrinx has grown to the size u indicate, that is troubling....not sure of the time line it grew in .....

  The sleep study sounds like something u may want to have at some point.....

  There is a product called earplanes to help with pressure when flying, u may want to try this item if u decide u want to go to a Dr that is further away.

I would suggest a 2 nd opinion....but with the syrinx being large this now makes sense.

    "selma"

[Amanda_ACMI]

When I fly, my head feels as if it is going to burst and there is dizziness and fluid from my ears. I wonder why he hasnt spoken of any of these tests at all?
I am going to call, because this concerns me. He is a good dr, ( highly recognized) and does about 30-40 of these surgeries a year. Im going to call and question his nurse and ask why none of this has been mentioned?

[Rylanesmom]

I found it ... It is on this thread excuse my chiari brain lol

[Rylanesmom]

Amanda where did I read that about the Dr and the surgery date .... I can't find it now.  Wasn't that you?

[Rylanesmom]

Amanda it is always worse with exertion.  It makes you feel like your head will pop.  You have found a group that knows how you feel:) I now know I have had that symptom since childhood .... It was my "norm" .... It was hat way for so many

[Rylanesmom]

Selma NS has her scheduled for surgery and has threatened not to see her if she does not keep the date

[selmaS]

  Well ur Dr would do testing to find all this out for u....do u have a NS or a NL?.....to see if ur flow is obstructed they do a CINE MRI, it is also called a Flow study....then u would have MRI's of all areas of ur spine, cervical, thoracic and lumbar, as a syrinx can form in any area, not just the cervical spine where most Drs look then stop....plus, in looking in the lumbar spine, they can also see if u have indications of tethered cord....this does not always show on MRI, but clues do.

Do u have ins now?....there are a few Chiari Drs in Tx...and u should be able to get to them....

What is ur issue when flying, what symptoms do u have?

    "selma"

[Amanda_ACMI]

You sound just like me! Its only upon exertion! How did you know you had a syringomyelia? Because that hasnt been discussed?

[Amanda_ACMI]

My NS said that a cine study was not helpful in actually making the decision of whether or not to have surgery. What did your dr say?

[sunnyset]

My quality of life is fine-- great actually. I do not have any actual symptoms other than headaches upon exertion, ie working out, straining, etc. Sometimes if I laugh too hard/long or if I get up too quickly I'll feel either a headache or light headedness. But other than that- healthwise, I feel great.

The reason why I am getting the surgery is because I also have syringomyelia. It has enlargened (almost tripled in size) in the past two years. So I consider my surgery to be preventative because I don't want to have any permanent nerve damage caused by my spinal cord being stretched.

Like Rylanesmom said, it is a hard pill to swallow. It definitely is for me considering that I feel "healthy."

[Rylanesmom]

Cine flow study .... Sounds like he is not a chiari specialist if they did not check.  I would be hesitant as well.  The tests should be part of the decision.  MS is a common misdiagnosis.  If you are not comfortable I would search further.  I was referred to a ns in my area and did research and flew to see a specialist.

[Amanda_ACMI]

Also how do I know if I have a spinal flow problem???

[Amanda_ACMI]

See, thats my issue, I havent been tested for any of that. I want to question how do you find out if you have any of these other things? My quality of life isnt horrible. Not now, but my dr. tells me I have adjusted. I am not as active as I used to be, because when this all came about, I was working out 3-5 times a week, and had horrible symptoms and was misdiagnosed with MS. That was when I found out I had the chiari. At that point I was told 2mm, and now since we moved and had a new MRI I am told it is 7-8MM.
Now, back then, it was horrible symptoms. I was jerking up in the middle of the night gasping for air, I was scared to go to sleep at night, and all in the middle we lost our insurance. So, I never was able to go have a sleep study etc.. I had weird numbness and shock like tingling or "zingers" or "zaps" as others have described.  Then the dr, says stop working out, stop this, stop that, and I did and within a years time, I wasnt having the symptoms to that extreme.
My worst thought, is I have been told this is my last opportunity for surgery with this dr. :( I never scheduled a surgery, but without my knowledge the nurse did, and I was out of town. The dr seems to think I backed out, which I didnt because I knew nothing of it. Im scared, because if I dont do it, there goes my opportunity with a very good surgeon.
So, I just thought ok, who better to ask then you that have been through this. Im not having any blackouts nor have I ever, but I get extreme pressure that has messed with my vision, and I had a laser procedure because of it. I get headaches that last 3-4-5 days but not every week.
I cant fly on an airplane , ever. And like I was telling you all a long trip in a car has me down for a least a week. I just seem to think, when I read all the horrible symptoms you guys have that mine isnt "bad" enough.
I would still like to hear more opinions, and I appreciate this.. I really do.

*undecided*

Amanda

[selmaS]

  Hi..welcome back : )

I would ask the same as Rylanesmom.....as it is more how is ur chiari affecting ur overall health and what symptoms do u have.

Yes, I had an obstruction and I was having drop attacks that caused injuries that required surgery.....so, it is things like that , that are considered....

But, we are all different, and u also have to know what other related conditions u may have.

Such as sleep apnea, tethered cord, syringomyelia, disk issues, ICP, PTC, Ehlers-Danlos......overcrowding and obstruction.

    "selma"

[deadmemory]

Hello there my friend, I found out that I had Chiari malformation1 about 2 years ago. I know since then I have deteriorated since then. I saw a local NS the same month I found out I had it. (I have already had a few MRIs, mind you) At first it seemed like he thought I needed surgery. The following week after a supposed conference he had with other local NS's and radiologist he decided I didn't need surgery. Well I kept deteriorating to the point I was starting to have episodes of syncope and visual loss and peripheral visual loss. I talked to my PCP in December after my bestie did some research on a NS by the name of Dr. Richard Ellenbogen. He specializes in chiari malformations and is one of the highest ranked NS in the whole country. I asked if my PCP would make a referral for me to see Dr. E and he did. A few weeks later I was in Dr. E's office and he said that my herniation was WAY worse than what the radiologists and NS said it was in Vancouver, and he knows I would benefit from surgery. He totally validated everything I was going through and apologized for the way I have been treated in the past. Surgery is to stop progressive symptoms like a syrinx (sp?) I do believe it is something that you need to consider yourself. Weigh the pros and the cons. Is your current NS knowledgeable of chiari? What have you tried to help pain if you have it? How big is the herniation? I think surgery is a personal preference unless you have a cyst in the spinal cord.. How is your quality of life? Since mine is so poor I cannot wait for my surgery. (which is next week) I am nervous and a little scared, but I am hopeful that I will feel somewhat normal.. Once a chiarian always a chiarian.. We will have this for the rest of our lives, but at least surgery can offer us somewhat some relief..
Anyways, I hope you can find what would be more beneficial to you.. Let me know what you decide to do!!

Your chiarian friend,
Krystal

[Rylanesmom]

Do you have a csf flow problem? Is your ns a chiari specialist?  My decision was because I can't live like this and I have a csf blockage.  It is a hard pill to swallow.