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Avatar universal

Information ... now what

Well, I have all of the information from all of my studies, I have seen three Drs and plan to see one more. Now what? I guess what I want to know is how long to wait to have surgery. One doctor says wait until the pain is so bad that I cannot stand it, and the one I just saw said if I wait that long, I have a greater risk of some of the symptoms sticking around vs. waiting until I notice that the symptoms are just beginning to get chronic (right now they come and go) and doing it then. He has noticed that less of the symptoms stay around if the surgery is done a little earlier.

Here is what I know medically so far:

11mm herniation, tonsils pointed
Pulsatile but constricted CSF flow through the ventral portion of the foramen magnum
Nearly absent CSF flow on the dorsal aspect of the foramen magnum
No evidence of syrinx in head or neck MRI.
       None of the doctors I have seen seem to think that a full spine MRI is necessary and that concerns me and is some of the reason that I am wanting to see one more person. I mentioned yesterday that many syrinx are in the thoracic area, even without being in the cerivcal area (via conquer chiari.org study) and basically got foo foo ed.

Anyway... my symptoms are minimal, and come and go. I was prescribed a diauretic to take to help with headaches, and told there was no other medication that would work for any symptom by the dr I saw yesterday. I was not impressed with him.

So .... now what?
13 Responses
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620923 tn?1452915648
COMMUNITY LEADER

  Hi...I know this is all very confusing, but once u meet the right dr that u feel comfortable with him and what he/she is telling u, u will follow their suggestions.

It could be, u just have not found that dr yet.....I went to quite a few drs b4 I found my dr as well.....but, u will know.

Chiari symptoms do come and go...and on a good day I went to a show in Brooklyn , NY with my DD, after parking the car and going in a nearby mall to freshen up, we came back outside...we stood looking at landmarks so we knew where we parked, and the next thing I knew I was headed for the pavement....I had a drop attack, I had no idea at the time, but u never know when these things r coming....and I felt great just b4 too!

It was the fall, and the injuries I suffered(which required surgery) that lead me to get answers and my DX.....

U do not want to wait till something like that happens....

  Do u have this next dr selected?.....

     "selma"
Helpful - 0
Avatar universal
I think I am going to go to one around Louisville KY or St Louis or something. I haven't decided yet. I am a little frustrated and I want to find a Neurologist that actually knows something this time. This guy did not impress me. I live in Western KY btw.
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  May I ask y u r going to a NL and not a NS? Once u have a chiari dx u go to the NS for info...most NL's r not  that well informed...and it is diff to locate NS's that are, so u really have to research the dr u go to  or u will be running in circles and spending money u may not need to if u would find the right dr.

  I know there is a NS in Nashville, TN...but I do not know how far u  would need to travel....
Will ur insurance allow u to go out of state?

   "selma"
Helpful - 0
1657459 tn?1311880092
Hi Lydelia,

Selma is right.  I ignored the advice of going to a neurosurgeon at first because my thought was "What do you think they will say?  Of course they will suggest surgery.  That's what they do!".  Once I found my NS I was so much more comfortable.  He was very well informed and very caring.  In my situation, he said the surgery is what is going to help but it was on my timetable.  If I wanted we could do it now, later, whenever it's not a problem.  If I didn't want to do it, that was fine as well.  Nothing was pushed on me.  I did mine about 2 weeks after.  I was having daily or near daily issues.  It's up to you what you choose.  He did mention that the longer a person was dealing with it the worse it could be but that was over a longer period of time.  I would suggest finding a good NS that you feel comfortable with and decide what is best for you.  Not having a syrinx is a good thing and gives you a better shot at better results because there are less issues.

Good luck!  I know it is all frustrating.
Helpful - 0
1777443 tn?1321332474
We seem to have almost the exact same situation.  I have a 20 mm herniation, constricted CSF flow through the ventral portion of the foramen magnum, minimal to absent CSF flow on the dorsal aspect of the foramen magnum, and no evidence of syrinx in head or neck MRI. I have had the thoracic MRI - no syrinx there either.

Compared to many Chiarians, I believe my symptoms are minimal. My headaches are horrible, but I've had them all my life. My neurological symptoms were gradual. I realize now that I have been compensating for them for several years.  But nothing that made me think I needed a brain surgery!  I spent a few weeks trying to convince myself that  I wasn't that bad and that I wouldn't need the surgery.  

I met with a neurosurgeon I didn't feel 100% comfortable with, and with another neurosurgeon whom I did.  In both cases, the doctors told me it was only a matter of time before I developed a syrinx and that it would be much, much easier to have the surgery before that happened.  It sounds like that is your decision as well.

For me, I don't want to encounter the problems so many of our fellow posters are now dealing with (syrinx, spinal fusion, increasing pain, permanent nerve damage.) So while brain surgery doesn’t sound like much fun, I am having the decompression/laminectomy on November 7.  And I will consider myself lucky as hell to have discovered this problem before it advanced into a more serious manifestation.

It is tough decision to make. A lot of my fear went away when I sat down with a doctor who was both incredibly skilled in the procedure, but also incredibly personable and human. Good luck in finding your right doctor-patient fit and in making your decsion.  
Helpful - 0
Avatar universal
I have consulted with a neurosurgeon, that was my first move after I saw the first NL and he said the same thing that all of you are saying. Yes, I am going to probably have to have surgery, but it is on my timetable. I decided to go back to a more knowledgable NL to help me manage my symptoms, until I decide to have the surgery. NS don't manage symptoms, they do surgery, as you all know. That was why I went to see the second NL I was unimpressed with. The NS I went to see was Dr. Joseph Cheng at Vanderbilt Hospital in TN, and I felt comfortable with him.

I think right now what I really, want, and why I am wanting another opinion, is that the whole idea of this surgery scares the crap out of me. Do I wait and have more problems? Do I have the surgery, and wind up with more than I started with? What happens if I wait and have a syrinx? Geez..... I'm terrfied. Also, I am THE bread winner in my house, and I have two small children. What happens if I decide to have surgery and I come out disabled? There is so much to think about.

I don't know if another opinion will help me, but maybe you all are right. Maybe I should see another NS, just to see what he says, since I am getting slightly different answers from everyone. I just want to make sure I have enough information to make this decision at the right time.

XenWarren ... I am in the same situation as you. My symptoms are minimal. Occassional horrible headaches, head tingles, and other neurological things that come and go, plus crushing fatigue (if I do too much, which is often since I work 12 hour swing shift). I realize that I have delt with a lot of it most of my life, the headaches and fatigue specifically. I've always been a napper. You are so brave to go ahead and do your surgery. I don't want to have any worse problems either, but at the same time I don't want to cause them.

I know that you all know what I am going through, and that  makes this less tough to deal with, but it is still stressful. What is also stressful is having a hubby who does not understand just how much fatigue I deal with on a regular basis, but that is another rant entirely.
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  In making a decision to prolong having surgery, is to know if u have a CSF obstruction..or a syrinx already...if u do not have an obstruction or a syrinx u may be able to go for a while with out surgery...and with regular MRI's to monitor u  and to check for the formation of a syrinx.

  Again symptoms will also guide u as to when u will need to address this.

   I totally understand ur reasons, and  wonder if u have a dr picked for ur 2nd opinion?
  

              "selma"
Helpful - 0
Avatar universal
I don't have another NS picked yet. The deal is I do have some CSF obstruction ... in my first post I noted it was almost absent at the dorsal part of the foramen magnum and constricted in the front. That is what concerns me. I don't want to keep waiting and end up with a syrnix and really serious issues, and at the same time, I don't want to do it too early and then make myself worse off than when I started, which I have noticed, can sometimes be the case.

I am thinking about contacting a true specialist for an opinion this time to see what they have to say. There is supposed to be a good one in Louisville or at the University of Kentucky, so I am going to try there and see what they have I think. Who do you suggest?
Helpful - 0
1731289 tn?1314138080
hi all...just reading your posts...I really can relate to everything.  I know I'll need the surgery, but so confused about who the right person is to do it.  In a crazy way, it is comforting to read your words, to know that others are as confused as I about not knowing if waiting is the right thing or not.  I am now in contact with some docs at JH...hopeful that I will gain some feeling that that is the right place to be.  I wish there was someone here in Columbus..but can't find anyone that will recommend a NS in my local area.  
My headaches are constant, neck, shoulder pain in chronic, and other syptoms are becoming more and more present.  Knowing that i have CSF blockage, I can only assume it is only a matter of time before I a syrnix will develop...if there isn't one already.  I had a CINE MRI, but not a full spine MRI....??  This is going to make me crazy.  
I have specifically asked the doctor here to tell me how many chiari surgeries he has done, and I am still waiting for an answer...Oh my, oh my....what to do...?
Helpful - 0
Avatar universal
I am glad that my post could help you feel better about not being alone.

I haven't had a full spine MRI either, and I would really like one just to ease my soul about whether there is a syrnix somewhere else. My symptoms are starting to stick around more too. :(

As for finding a doctor, that is the thing that I am doing now. I found a neurosurgeon I like, he was really honest with me, but I have been going for other opinions, just to make sure I am making the right decision. What you are doing is right.  You have to keep on looking until you find someone you are comfortable with.
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  I do not know if u r able to travel, but that would be the first thing u look at, can u and how far can u go, next, how will ur insurance work for u if u travel....

There is a NS in Nashville...a few of the members have used him, u will want to research him.....http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

  There r quite a few good chiari drs out there, but I do not like to refer or suggest a certain dr as I feel u have to feel comfortable with that dr, and personalities get involved in that  aspect...so  a Dr I like, u may not....the important thing ism, that u research the dr, know he is well experienced with chiari and u like him and his course of action for u.

Go with ur gut...u know u and what u need.

    "selma"
Helpful - 0
1306714 tn?1327257080
I love being back on line so I can keep in contact with people who can  relate to Chari.  For me I found a dr I was comfortable with and having all of you to talk to helped me make my decision on having surgery.  For me like my Dr said.  I was 48 years old last year when I had my 1st surgery. As he told me.  You know that  you will eventually have to have surgery, he told me which I do find it very true.  It is best to get it over with when you are younger because you are healthier and your healing time isn't as long which was true.  Unfortunally for me it was my body that rejected my stitches so I did have to have other surgeries, but it was all worth it.   My health is better, but either way we look at it surgery or not we will never be the person we were before chairi entered our lives.  It's excepting the changes that has been hard for me.  I can no longer work by the advice from my dr. which has been hard to except, but like he said to me.  You have to look at the alterative.  No one want's to hurt every day of our lives, and I have to say after my surgeries.  I do feel better and it was all worth it.  It's just being patient with yourself that you need to learn, which was a hard one for me.  I have never been a patient person or one to sit.  Now I appreciate the little thing's in life.  My advice to those of you who are trying to decide surgery or not surgery.  Have it done then you can begin to heal.  I wish you all well in your decision because it was a hard one to make at first.  I am just thankful I found  chairian out there going through the same thing.  It sure help's to have other's understand.  I have a lot of people who love and support me, but no one know's except  for other chiairian's.  I thank you all
Helpful - 0
Avatar universal
Hi, I was reading your post and I was just wondering, what do you mean, your body rejected the stitches... don't they all use the same kind of material?
I read that the NS will stitch it, staple it and also use glue or something...
With my daughter up for the surgery I just want to educate and  prepare myself for all different kinds of side effects and/or scenerios.. thank you.
Helpful - 0
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