Chiari Malformation Community
sugery
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sugery

I would like to know how many people had surgery and the surgery it did not help them.  I had surgery done about 3 months ago and i feel worse than before i had surgery.  What are the problems you had before surgery and what are they now.  I had nurological problems and headaches and now i have a whole list of things that i could put down.  I woudl like to know how many members have this same problem.  
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620923_tn?1416285879
Hi...I can't answer this but I can BUMP it up in hopes someone else who can will....  : )


"selma"
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How bad was your outcome? I'm scheduled for decompression on 4/02/09 and I am very likely to cancel it due to so many different stories I've heard regarding post-op. Can you please help and tell me how much more worse is it now?
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661788_tn?1269018186
I did not know much about the surgery before i had it my nuro doctor did not tell me much and what i was in for.  I thought that i was getting better but then my headaches came back and i just could not function.  I have memory problems, cordination problems, and sometimes i was told that i act drunk but without drinking.  I still do now but they have me going to PT, pain mangement, Primary doctor, Nuro doctor and a special eye doctor.  I do have problems with my eyes and not seeing very good.  My eyes jump, and i do not see all the letters in a word so i have to read it a couple of time before i know what i'm reading.  who is doing your surgery?  Is is a Chiari specialist or a Nurosurgeon?  I have had this all my life and they never did catch it untill September of 2008.  I do have problems with walking.  I have paralization in my legs, arm but i can function with out a wheel chair.  I do have ringing in my ears and sometimes my ears plug up.  It has been hard for my Husband because he is the one that takes care of me and has to watch me when going on walks, and doing activities.  If you do have the surgery i hope for the best.  I have heard mixed stories and it also depends on how well you heal, and how long you have had it.  
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570413_tn?1299536261
Yes, I'd love to know if your doctor is a Chiari specialist.  I suspect not because you would be working with him to find a cause of your problems.

My daughter was tons better for the first 6 months after surgery.  Now, she is not to the point she was prior, but getting closer.

We have an appointment with her Chiari specialist to try to get her help.  Plus, she had a syrinx.  So, surgery was even more necessary to help stop the progression of her syrinx.  There has not yet been change in them, but that is because she is still living with high pressure.

Has your doctor used steroids since you've gotten worse?  What about Diamox?  These two meds can really help get things calmed down.

Rebecca

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661788_tn?1269018186
My doctor did not put me on Steriods.  they make me swell realy bad so i do not take them.  My Nuro doctor was not a Chiari Specialist he was just  a Nurosurgeon.  I was told that because surgeons do not know about chiari much it can not be a good thing for them to do the surgery.  I did not know that before i had it done because i did not know about it.  I hope that your daughter will get the hellp that she needs and the surgery does help her.  Children should not have to go through all this medical stuff.  They should have to just be kids not patients.  
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539750_tn?1226525277
Most NS's will say that the surgery is to stop progression, if you symptoms get better great...but you should see a specialist.  I traveled two hours one way to see my NS who performes about 4 Chiari surgeries a month.  Compared to the first NS I saw who has only done about 10...
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661788_tn?1269018186
I do not know how many surgeries my Nuro doctor has ever done but my dad works at the hospital where he works and said that he was a very good sergeon.  Well respected and all.  No complaints that anyone could find.  I not think it was the surgeon i just think that my situation was just not one of the good ones.  I was told that may have been that i took so long to find it and that i had nuro problems already and that might be why it did not work so good for me.  I was told they sooner they caught it the better offf you can be.  I have had mine all my life and this is the first time they have ever done anything like this.  I was diagnosed with MS for a while and then it was taken back several times.  Well now we know what it is we can take care of it and hopfully do something about it now.  Hope the spinal hospital whitch is only twenty minutes away will be able to help me even since i had surgery already.  My doctor is going to try.  I think that it is hard for people that have rare conditions because not very many people have heard of it and they do not know how to treat it.  We need more doctors to help other people that have this problem or some like it.
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My mother did a surgery on April 11, 2011 and has been in a coma since. Her vitals are good however she is able to only open her eyes.  Her eyes are not focused and she does not obey commands.   MMy mother is 63 years old. I really don't know what to expect anymore. The doctors are saying give it time.
  
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620923_tn?1416285879


Hi and welcome to the Chiari forum.

I am so sorry to hear of ur mother's condition....may I ask, was this a surgery for chiari?....a decompression surgery?

  And I have to ask, was this a chiari specialist?

What was ur mom's symptoms and condition b4 surgery?....


  I am so sorry and am sending prayers that she recovers soon.

    "selma"
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1672915_tn?1335224198
sorry to hear that you are feeling worse after your surgery. Like you I feel worse now then before. I was diagnosed with chiari 1with a syrinx this past October and had decompression surgery the end of Jan.My neurosurgeon told me that the surgery is only to prevent being paralized. I hear that the recovery is tough and may take a up to a couple of years. I was told that I had this condition for years and just started feeling the symptoms 3 yrs ago. I have corodination problems and also walked like I was drunk all the time, bumped into furniture, walls and I just thought that I was just clumsy. I am going to PT and it is helping but it is going to take time and effort. Before I found out that I had a chiari malformation I was seeing a chiropractor ( which was the only Dr. that new something was wrong and never gave up on me. ) and also a pain doctor. When I told them about having chiari and having surgery they both told me that was probably why I wasn't responding to their treatments and they should be able to help me after the surgery. So keep on fighting and don't give up!
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Avatar_f_tn
i had surgery feb, 2011.  at this point i feel the same as before the surgery and i am 3 months post op.  my symptoms were horrible before the surgey, but i feel surgery was worth the chance of feeling better.  my advice is if you can live with the symptoms and they are not that bothersome, dont have the surgery.  unless of course there are some other risks if you go without treatment. if you cannot tolerate the symptoms, then yes the surgery outways the risks.  however, ask your neurosurgeon how many he has performed chiari decompression.  mine does about one a week, which is considered someone with experience.  you dont want to go to someone who has done 10 in his career!
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I have to say yes I did have my surgery Dec of 2010. It was the best thing that I ever did. I have a great Dr at OSU in Columbus Oh. I was having migraines  almost daily and many other symptoms to list. I was on so many meds It took all I could do to just go through my day.  The only thing that I can say that was bad about having the surgery was that I was fired from my job because I choose to have surgery. I had my surgery 6 months ago and almost all my symptoms are gone I still get a few migrains but not bad I am on only one med and can do most anything that I want now without pain. I cant believe how much my life has changed.  My advice is always ALWAYS make sure to have your surgery done by a Dr that knows about this disorder
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620923_tn?1416285879

  Hi and welcome to the Chiari forum.

Well  U r a newbie to ur surgery and still in recovery phase.....and I agree with u in that I also am glad I had my surgery.

We also agree, u need a true chiari specialist.

So glad to welcome u here, but sorry for the reasons that brought u.

    "selma"
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1759188_tn?1324681908
  to lovage,

   i like you feel worse after surgery.  i had my surgery may 28, 2008. i have tinitus, vertigo, my eyes went from 125 reading glasses to 3.50 glasses, my gait is off, i don't need to drink cause i'm in my own lil world, my memory is awefull, the pain from surgery site to middle of back, my ears hurt, oh i could go on !!!  but we are not alone.  i hope you get better
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Avatar_f_tn
My name is Angela and I'm having surgery soon. I was diagnosed in August this year and my surgeon is a specialist in chiari also. I have been getting worse with my symptoms and am really looking forward to surgery for a chance at "normalcy." Is there any suggestions on after surgery to make things go smooth as possible
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Hi Angela & welcome.
I am 3+ mo.post op, so may be able to help, as will others.
First of all, rest, rest, & more rest.  Each week, what is "normal" will change; it is important to test the waters, but there may or will be repercussions.  Try to accept overdoing as a natural part of healing.  In other words, no self-recriminations.

Line up as much support as possible.

For some reason, there is a 3 mo. "Dip"--they don't know why--i thought that I was prepared, just knowing about it, but it is is real, & needs to be prepared for, psychologically as well as physically.

I had short, medium, & long range "goals".  E.g., just new pjs & comfort food for my short term recovery.  I have driven only once so far, and I figure that I will venture out when Im ready.

Treat yourself as well as possible; healing can be a bumpy road.  We're here for you!  Best wishes.

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620923_tn?1416285879

  Hi and welcome to the Chiari forum.

The best info in addition to what u already received from Viv is to make sure they test u for all related conditions as it can affect how u feel and heal post op.

We do have a list of tips for the hospital stay and things u can do for the home time period ...as Viv mentioned as much support as u can get....as u will need time to rest, rest and then rest some more.....regardless of how good u may feel right after,,,,,u should not push to do too much as it can cause set backs,

And the 3 month "dip" is when u may have a return of some symptoms, this happens as ur nerves begin to work again after they have been compressed....when they start to work many times they over compensate or r over whelmed by all the signals and u feel like the surgery was not as successful as u may have hoped....it is a matter of not over doing it and allowing ur body to heal...u have to give it time,

Ask questions so u r educated and know what to expect....and place ur surgery date on our surgery date thread so we post a Prayer thread for u : )
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