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Chiari Malformation Community
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Avatar universal

Constant headaches following decompression surgery

I had decompression surgery 12 years ago.  Three days after the surgery I began to experience frequent migraines.  It took 2 years for the migraines to be diagnosed.  I've seen 2 Chiari specialists who have only suggested I continue to follow up with my neurologist.  The neurologists I've seen have done follow up MRIs, etc. but everything looks fine to them.  I have been on so many migraine treatments (meds to prevent the headaches and to treat them).  The migraine meds no longer take the headache away so I deal with a constant headache every day. I've tried botox injections and trigger point injections as well.  The botox didn't help much. Trigger point injections worked pretty well for about 5 years and then stopped.  I'm wondering how many people continue to experience headaches (migraine or otherwise) after their surgeries.  Have you found any treatment for it. The most important question --- has any doctor been able to come up with an answer regarding why the headaches continue?  
6 Responses
620923 tn?1452919248
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

First my NS explained surgery was not a means to get rid of symptoms, but a means to restore CSF flow and slow progression....it is not a cure, and they hope most symptoms will fade away.

It is also my understanding that scar tissue can form, the herniation remains, and u can have related conditions all which can cause one to have migraines or Chiari HA's.

U need to look at what u do on a daily basis, could u have a CSF leak, scar tissue or a related condition that is causing ur HA's.

May I ask when was ur last MRI?
Avatar universal
With constant migraines, I have heard where people need to be decompressed again ( if not enough room was made,). , or if there is too much Csf flow, can that also cause these ongoing headaches ?  When is a shunt used for peo
Avatar universal
Ooooops, when is a shunt needed for people.  I know someone else suffering with constant headaches  post op, now 1 year & their  chiari expert is concerned ( yes he was an expert ) so they will be seeing this person again to see why the constant pain.   I also thought lumbar drains are not advisable for chiari ?
620923 tn?1452919248
COMMUNITY LEADER

  There are several possibilities...not all migraines post op are due to  CSF build up....it can be multiple things....

An infection, hopefully not....an underlying condition not found pre op.....it could be a leak, or not enuff room was made and the CSF is still obstructed.

Shunts IMHO should be the last possible option considered....many do need them, but I think some rush into using them b4 looking at other possibilities and can cause as much issues as no shunt....

Look to what type of patch was used,,,,,,was EDS ruled out, tethered cord, ICP, POTS....?

A lumbar drain is not an issue if done properly and by techs that are informed on Chiari ,,,,,,

Sometimes the draining of the excess fluid gives the area time to heal a little better....and I think u may be thinking of a LP we are told to be weary of...but those too are needed at times so we just need to make sure they know to draw the fluids slowly as not to pull the cerebral tonsils down further,....
6626748 tn?1388424688
My decompression surgery w/cerebral. tonsil. shave was in 2010 and I've continued to have headaches, forgetfulness, left sided numbness, depression since pretty much a few months after surgery. I'm not writing this to scare you, it's just that sometimes surgery helps, sometimes it doesn't...My NS was *fairly* upfront with me about it. But I'm a nurse, so I should have known to get a second opinion. In a lot of ways, I feel worse.  :(
Again, I'm sorry. I guess I just need to vent.
620923 tn?1452919248
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

I am so sorry u continue to have issues post op....many develop  these issues bcuz of a related underlying condition not DX'd /found b4 surgery.

Sometimes it is a result of surgery....too much bone is removed, or too little, scar tissue forms....

So u may want to see a diff Chiari specialist to see what is going on with u as u may be able to get some relief.

Know u can vent here all u need, that is y this forum is here, and know we all  can relate and understand.
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