Trying to decide on surgery.

[heathpez]

I was diagnosed on 6/28 with an 8mm chiari. My sysmptoms started in March and became constant. I teach PE and since I stopped working for the summer my symptoms have improved but are still there. I had come to the conclusion that I should have the surgery and soon so I can return to work in Sept. The more I read on the internet the more freaked out I become about my decision.

I've been told this is a stright forward procedure, so do I really have to go to someone who specializes in it? The sergon I like is very well respected and has done this surgery countless tmes. I've been told 3 days in the hospital and 2-3 weeks recovery. Is that really the case??

If I choose not to do this surgery now do I put myself at more risk? I want to have another baby, can I still do that? I had a c-section last time. I've read things on having a spinal.

I DON"T KNOW WHAT TO DO! I'm becoming more anxious and depressed about this each day.

[zygy2]

:) Hello-  Sorry for your reason for being here but happy to tell you that this board has been so helpful for me though all the chiari questions.  Trying to figure out if you will benefit from surgery is so hard!  You really have to think it through and know you are making the choice you really want.  Hopefully things would go as planned but you always have to be prepared for whatever may happen, or as prepared as you can be.  I had my first decompression a year ago and ended up with a leak, second surgery two weeks ago, that led to chemical meningitis and overall it has been a very long process.  I am still happy with my choice to have the surgery but it has been a lot more than I expected.  

The three days in the hospital may be an average but i think when you read stories on here you see a lot more that go 4-6 days.  I was only two days, I you don't see many that low so I did have luck in one area :)  Three weeks recovery is just a CRAZY statement, this would worry me that your Dr. said this.  I am not saying you don't start to feel better in three weeks but you sure are not ready to return to normal.  I didn't drive for five weeks!  That was the first time, this time I seem to have more neck movement but I am two weeks post op now and am positive I am nowhere near driving yet, just riding in the car hurts!  Sleeping is terrible because the nerves in your head go so crazy, it is not just incision pain, it is muscular in your neck, shoulders and back and all the crazy nerves in your head.  My head is so sore on half of it.  First time was my right side but this time it is the top of my head and my left side??  Now that I am coming out of the crazy time, the level of tired is the hardest.  Keeping my eyes open can feel like a task.  I think by three weeks I will be doing more but it is still a slow progression back to normal.  

As for a specialist... Obviously it is up to you.  I loved my first surgeon, she did a great job but my "specialist" now thinks my leak is because of the type of patch she used.  I am happy she did a great job with everything else but do wonder if I would have had the complications if I had found him first.  You don't want someone that is not smart enough to figure out HOW MUCH bone to remove, what type of patch to use on you, will they open the dura, do they remove the back of C1, there are so many questions that you want to agree with your NS on!  You don't want to have to re-do this surgery or have things fixed because they did too much or too little.  You also need to do your homework and see what you think you need to have done, I  do agree that it is overwhelming and confusing at times but when it comes down to it, it is your head!

I would think things would be good after decompression for child birth?  Those are questions you can ask your NS now!!!  Probably better for you after decompression than before.  A lot of us say symptoms increased after giving birth to our kids.  Just keep making your list of questions for your NS and make sure you ask all of them before making any choices!  Might be a straight forward surgery but not everyone has the quick easy straight forward surgery.  Just having a five pound lifting restriction for weeks is kind of crazy, you would be surprised!  I was terrified of the word "lumbar Puncture" "spinal" like you because of things I had read.  When I just went into the ER after surgery number two I had to get a lumbar puncture and was really grilling them before they were allowed to do it.  I knew it was not a good thing for Chiari people but I can say that although it was painful, it worked, it found my meningitis and I don't appear to have had any problems from having it.  Once again though, I asked many questions and GRILLED the poor guy waiting to do it for a very long time.  I NEEDED to know that he was qualified to give this to me as a chiari patient so that I had no additional issues.  Once I was happy with my answers I let him do it but I feel it is so important we learn all we can and really take control of what is happening to us as much as we can.  I wish you luck trying to figure out what is best for you. If you have any questions please let me know, sitting in my recliner recovering anyway so very little to do :)  Thank goodness for the lap top!  

[cash242]

Selma is right first look at all your symptoms and I get where you are coming from as I work in the school as an OT.  Everyone is different and I had to have my surgery I was leaving work at one every day because I could not walk or talk anymore it had to be done.  I am 5 mo post op and not sure how I am going to return to work in 1 month.  I have my good days bad days but still have headaches everything else is great brain fog gone most of time.  I did not go to a chiari specialist and my NS is amazing BUT he told me 2 mo and your life will be back to normal--its not.  And when I continued to have symptoms he sent me on my way to someone else.  Go to a chiari specialist because if complications arise and they may not they can support you, I was in limbo trying to find a new dr right after surgery. Many people have great success with surgery it is a very individual decision I wish you all the best!

[selmaS]

  Hi...and welcome to the Chiari forum.

  OMGoodness no!!! there is no time table that can be given b4 u have surgery as no one knows how ur body will respond.

  First what symptoms do u have...do u have a syrinx, do u have a CSF obstruction?

The benefits of surgery must out weight the risks...not just going to a Dr that has done the procedure either...u want one that specializes in it too.

  U need to know much more b4 u consider surgery,.....and it can take up to 2 yrs to heal completely, those that try and go back to a normal routine sooner tend to have set backs.

Try to relax, stressing over this will only make u feel worse.

List ur symptoms and the related chiari conditions that were ruled out- ie- syrinx, tethered cord,sleep apnea,ehlers-danlos, intercranial hypertension,......

Did u have a CINE MRI?

Once u have a chiari specialist they can guide u as far as child bearing etc...but a c-section is recommended for those with chiari.

   "selma"