CHIARI MALFORMATION COMMUNITY
After having surgery, can symptoms get worse?

After having surgery, can symptoms get worse?

  Hello there, I'm a 27 year old female.  I was diagnosed with a Chiari 1 Malformation back in July of 2006. This was after a long struggle of seeing many Doctors and having many different tests.  I had one appointment with my Nuero, and he sent me for an MRI.  I recieved the results at my 2nd appointment with him and he suggested that I have the surgery. He said that it's better to get it sooner rather than later when I have more symptoms, and that it's better to have the surgery while I'm young and can heal faster.  Needless to say, 1 month later I had the surgery. All I know is that he and another Doctor that he works with did the surgery and that they drilled the whole that my spinal cord goes up into my brain through, and made it bigger so that more CSF could flow through.  Oh, and that they put the lining of a cow's stomach or heart in there as well?

  My symptoms before the surgery weren't bad, but they were bothersome.  But now after the surgery, they are considerably worse!  And after a year and a half after the surgery my Dr. finally decided to see me again to see what I was talking about.  I told him about the horrible headaches that I get more than half of the days out of the week, the muscle spasms  that I feel from my head to my toes, and I feel like my muscles a dying on me?  They feel like they are getting weaker as time goes on and that scares me!  He sent me for X-rays on my neck to see if anything was wrong, but he didn't see anything there.

  My question to you is, should my Nuero have taken MRI's after the surgery to make sure that everything is O.K.?  And is it possible that the symptoms that I'm having now are from the Chiari Malformation and he just doesn't know that much about Chiari's to know what exactly is going on with me?  Or do you think that I could have something else wrong with me?  I have had a muscle spasm in my right eyebrow now for 20 days straight and that just doesn't seem normal to me!  And last month I went numb on the lower portion of my right buttox for about 2 weeks!

  I hope this isn't to much to ask of you, and if it is, I'm so sorry I took up your time.  Thank you for  taking the time to read this and to answer me back if you choose to do so!  I wish I had a way to keep it short and sweet, but I figured you would probably want to know all of the information. Thanks again!!
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620923_tn?1335125657
...sorry I have not had the surgery, but we have a few that recently have..Shane99.....Lovemygirls2.....Lovage....

I do know u need a chiari specialist...a NS that specializes in chiari and related conditions...othe NS can do the surgery, but it is prefered to have an expert.
I am not sure who u had.....speak with one or all of the members who have had surgery for what is common afterward.

join us in our social activities here on the forum!

keep us posted
Godspeed
"selma"
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Avatar_f_tn
My husband  had surgery 2 weeks ago and he's symtoms (symptoms) are heaps worse too. The Neuro surgeon said this may happen, but its not all bad....he said the majority of his patients get sudden results with-in 4 months to 1 year after the surgery. I know its been longer then that for you though.
I suggest going back and getting another MRI, the symptoms might not even be related to the Chiari.
I wish you the best of luck
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Avatar_f_tn
was the dr. that did the surgery a expert ? Do you have a follow up post op appt. I would be calling and letting them know whats going on. Where do you live?
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Avatar_m_tn
Hey there!  I began developing CM symptoms about 8 months after my surgery.  A follow up MRI was performed and detected hydrocephalus, too much cerebral fluid on the brain.  This can occur in about 50% of all CMers who have had the surgery.

A VP shunt was put in my head to control the excess fluid and the symptoms went away.  I am suprised that your NS has not done a follow up MRI.  Push for one.

Peace,
jptdad
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Avatar_f_tn
  I don't think my NS is an expert?  My boyfried said that he remembers my NS say that he had never done that surgery before, but I don't remember that. I remember him saying that it was either a fairly common surgery, or that it was a fairly simple surgery.  I do know that my surgery date was pushed back 2 or 3 timed because he wanted to wait and have his partner be there for the surgery as well.

  I did go back to see him after my surgery to get the stiches out, and then for an abcess (abscess) that I had on the scar.  But then that was it. No follow up MRI or anything. I told him that I was having a lot of trouble with my neck and he said that's going to happen for quite a while.  Then a few months ago I called him to complain of all of the new symptoms that I had developed and he said that they had nothing to do with the Chiari, but to make an appointment.  So I went and saw him and he had an MRI done on my neck and on my spine to check for something that I can't remember the name of right now , and I called for the results and they said that eveything looked good on my spine and they were waiting for the neck results to come back and they would call me with those results.  And that was the last time I've spoken with his office.

  I have to apologize every time Iwrite a post, I don't know how to keep it short and sweet and still give all of the details?  Well that's my story, well some of it anyways!  If anyone knows of a good NS in the Albany, NY area, please let me know. Talk again soon.
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Avatar_f_tn
I will be four weeks post op on Tuesday.  My symptoms went away almost immediately.  I still have one lingering symptom- brain pain when I strain (laugh, sneeze, cough, etc) But it is getting better everyday.  I am really surprised about the lack of a follow up MRI.  It makes me think your NS wasn't a specialist.  Because I am going back Dec. 1 for my follow-up.  I am scheduled to have an MRI and then an hour later I will see my NS.  When I see my NS he will tell me what the MRI indicated.  So....I doubt yours was a specialist or I think he would have done the follow up MRI.  Good luck finding someone close to you that is a specialist.  Maybe a new doc can give you some answers.
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555358_tn?1292535661
You might want to get a copy of your MRI's. And see about getting a different neurosurgeon to look at them.
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