Do symptoms occure again after surgery?

Question

I was found to have Chiari 1 by accident as I was having severe back problems.  I was 'rushed' through to a specialist who said I really needed the surgery - which I had in Dec 08.  I was told at the time that this was corrective surgery and that I wouldn't have any more problems.  But recently I have been getting more and more headaches, I have trouble sleeping for various aches and pains, I suffer a lot of giddy spells and various other things.  The doctor just keeps doing blood tests but don't seem to relate it back to Chiari.  Wasn't happy with my specialist for the lack of care after the surgery, so I am wondering if I should try and find another specialist.

Viva001 · Answer

Steroid use during & after surgery is very routine, from everything from removal of wisdom teeth to tonsillectomies to cardiac surgery. Perhaps that's an unexamined medical model, but from my DH's & my surgeries (2 different hospitals) and my DD's experience at CHOP, it's used a lot.

selmaS · Answer

Nope I did not have ne...I have issues with meds so I was informed as to all that would be used....not all use steroids....I know some do, but I was not given ne....it was not on my list....

 I did have a drain that not to many others seem to have either, so not sure y but drs all have a diff way to doing this and how they decide to handle it meds, or drains, to cauterize or remove tonsils each one will be different....but I find that so many that said they had steroids were aware of them, and had an issue and said that was y they had them....I do not recall  neone saying they had them as routine preventives for swelling....

Viva001 · Answer

Are you sure?  Steroids are pretty routine; they reduce selling & make you feel better. You may have had them only IV.  I assumed that I did IV too, but I also had some pills to take for a few days.
When they wear off, the reality of surgery does become more obvious.

selmaS · Answer

Hi and welcome to the Chiari forum.

 The poster u replied to is not an active member and this is an older thread, u may want to post a new thread so u get more replies from active members.

 How long ago was ur surgery, who did it and what all was done, did u have a lamectomy, a duraplasty? Do u have ne other related issues?

 May I ask y u were on steroids post op? I have only heard of those that had an issue post op that were on steroids...I had surgery and was never on them...so I wondered.....

sandrajeanne23 · Answer

I had the surgery and seemed to be symptom free afterward but the day after I had stoped taking steriods the symptoms slowly returned.  I have swelling and pain in all my limbs sooo bad plus feel exhausted a lot.  I had another MRI and the surgeon showed me the brain sits back up in my head where it should be all the excessive fluid in my spine is gone.  He said the pain is probably from the damage done to my spine from the excessive fluid that was there prior to the surgery.  I dont have the bad headaches I had prior to surgery but the pain is unbearable at times.  I pray every day that someone can help.  If anyone has an answer as to what will help I would love to know.  I am sure it would help many of us with this same problem.

selmaS · Answer

No worries, it is possible for the chiari to be the cause...and getting a MRI to compare to ur post op MRI may be the best course to take.

  U may need to find a new NS, one that is a chiari specialist to review these MRI's for u and ***** what is going on.

 Good luck and do keep us posted on this : )

   "selma"

Lozza1305 · Answer

Hi Selma
Thanks for your response.  I am so confused and totally at a loss with all this. I was actually suffering from a bad back when this was found, but on consultation I was told that if I didn't have surgery I would lose the use of various limbs.  From time of diagnosis to surgery was about 4 weeks.  I have since had to have surgery on my back to fix the problems that I original had.  I didn't even know I had any symptoms of Chiari.
I had decompression surgery and duraplasty was mentioned.  No mention of shaving of the disks.  I had one post op MRI at 6 weeks and at 10 weeks signed off and never been seen again.  I started having some problems with my left arm and mailed the Neurosurgeon (who is a specialist in Chiari) and was told (and I quote) 'you have had a Chiari I malformation but that you have had surgery to correct it. You are correct in saying that having had the op, you should consider that the condition has been corrected and therefore you should not get any further symptoms.'
I have lots of trouble sleeping, neck aches - which appear to generate head aches.  A pain in my upper back and my legs at times feel like dead weights when I am walking.  Don't know what to do as the doctors will just start again with all tests, but I am concerned that actually it may be the Chiari.
Thanks for and advice/assistance you can give.

selmaS · Answer

Hi and welcome to the Chiari forum.

  jen answered ur question and even gave u a link to specialists in the UK...having the right NS is key.....

 DO u know if ur surgery was a full PFD surgery with a duraplasty?...did they shave off some of the disks to make room for CSF flow?

 Try to find out the type of surgery u had since there r several types, and one is rather conservative and can require a re-do,.

 It is also possible to have a Dr do the surgery that is not as experienced and may not know how to deal with surprises.....

 Have u had a MRI since ur post op MRI?

 Do u have copies of ur post op MRI?
  
   Glad to have u join us, sorry for the reasons that bring u.

    "selma"

jenshead · Answer

Short answer:  Yes, it's possible to have symptoms after surgery, even years later.

Long answer: Chiari surgery is not "corrective", it's for slowing the progression and preventing possible permanent damage.  Regardless of whether or not you've had surgery, someone with CM should be having a brain MRI (and possibly spine MRIs) annually to check on it.  The part about your doctor saying it's corrective is concerning...you should consider going to a specialist that is listed on the UK specialist list (http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1503562).  If you cannot see one of them, you might want to push (respectfully) your current doctor to order an MRI and check on your CM.

Good luck and let us know if you have any other questions.  The people on this forum have a lot of knowledge of this condition and can be extremely helpful.