reoccurance of symptoms after decompression surgery

[Heather0532]

I had a decompression surgery in 2003 for my ACM.  My symptoms at that time were the usual massive headache, vertigo, problems with balance, speech, and loss of dexterity.  For the last 2 years some (all) of these symptoms have come back into play with my health issues.  The last 2 months I have been getting a pressure buildup in my neck near the scar from the surgery.  I now have a small lump the size of a nickel and a problem with hearing a pop and then feeling a sensation of water rushing over the right side of my head.  I have no problems with ear infections or sinus problems.  How common is it to have a reoccurance of symptoms this far from the surgery? Is the popping and water sensation something anyone has heard of before or am I going crazy? Please help me if you can.
Thank you,
Heather

[selmaS]

  Hi and welcome to the Chiari forum.

U happen to say what I always say, mayb a little differently, but the message is the same...it is nice to have someone repeat what I say and get others to finally hear it...

[selmaS]

  Hi and welcome to the Chiari forum.

As the other member  stated there is no cure for Chiari and u may have other underlying issues that r coming into play...sometimes it is ehlers-danlos, scar tissue may have formed and when u turned it may have tugged enuff to cause a CSF leak....the nickle size lump may be just that....sometimes a smaller leak is not noticed as quickly as we adapt to the sensation and symptoms from it , but a larger one is harder to ignore.

  Also do u know if u had the full decompression, some Dr do a less invasive  procedure and it does not last long as it does not offer the room needed or given by the more aggressive decompression with laminectomies and duraplasties.

  Find out what all was done during ur first surgery, get a MRI and compare to ur post op MRI....and find a Chiari specialist to help u.

Testing for the related conditions like tethered cord, and EDS are some of the ones I would think the drs will do as well as POTS and ICP.

[tattie197635]

This was well said...it is more than frustrating to hear your doc, say they know about CM, when what? they read about it in med school, I am having second thoughts of my GP doc because she just don't seem to understand so I am going above and beyond to get to a Chiari Specialist. My insurance plays a part also, not wanting me to leave the state or go out of network...how have some of you dealt with this issue?

[Viva001]

Great answer; thanks for those stats!

[jbjlm22]

I'm sorry that you are having symptoms again. Unfortunately there is no cure for Chiari regardless what some drs try to tell you. Honestly, if a dr tells me that I litterally get up & leave all while telling the dr that he/she needs to do more research. Chiari is an acquired birth defect 99,9% of the time. We "Chiarians" only elect to have surgery to stop further spinal, brain, brain stem, nerve and stc damage from happening and to help with pain control. "Chiari surgery" medically known as Posterior Fossa Decompression surgery is evolving everyday. The success rate 10-12yrs ago was only a 60% chance that your symptoms would improve. It's now up to 80-85% but only if done by a Chiari Specialist. New research shows that many of us who have Chiari also have many other genetic disorders & other birth defects that can cause the "Chiari Surgery" to be unsuccessful years later. Mine was in 2004. I only had 2yrs of relief from the headache from hell but still had other symptoms. Then one morning I turned & my neck popped & all the Chiari symptoms plus new ones returned. It took me a yr to find out what happened & had to travel from TN to NY to see this dr. Many of us also have Tethered Cord Syndrome (TCS) & after our surgery we feel better at first but it's only time when we feel bad again because the TCS has pulled our brains back down into the opening of the spinal cord (foremen magnum) again. It restricts the cerebrospinal fluid from flowing properly causing the headache & other symptoms. Many of us also have Elhers Danlos Syndrome (EDS) & it causes our skull to settle farther down than normal creating more instability & even worse Chiari symptoms. Please know that you are not alone. I encourage you to be your own patient advocate! Read, learn, study all that you can about your body & each condition you have. Not many drs know about Chiari & even less about all the other things that go with it. Don't be afraid to leave the appt if you have to explain to them what Chiari is. It's going to happen & you dont want them for any of your drs. It is your brain & your brain effects everything!! Dont be ashamed! Fight for yourself & the best care out there just be willing to travel! Let me know if I can help in any way!