Over a year since surgery

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I had my surgery 9th of september 2017 av had pains and things head aches but past couple of day my skull were it was operated on like the bit bone removed has been very tender sore to lie my head back on things iv been waken up past 2 night feel really crappy does anyone else have problems a year after theyr operation?

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  • Posted

    Most do, usually sooner.  Decompression surgery provided less than 4 weeks of symptom relief for me, but Tight Filum Terminal Dissectum (form of tethered cord surgery) got me out of bed after 2-1/2 years and gave me HOPE.  Do your research.  Three US neurosurgeons perform a version of this: Dr. Heffez, Dr. Bolognese, Dr. Frasier Henderson, and one in Spain: Dr. Salvador.  A GoFund set up by friends and family got my wife and I to Spain to have the surgery; pretesting done in US.  Tried to get appointments with the US surgeons mentioned above but would take a year of more for whole process (initial appt., testing, surgery) and was not covered by my insurance, so from start to finish took 6 weeks for the Barcelona route.  Do your research.  Steve
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  • Posted

    So a year past had my appointment with tge symtoms i have neurosurgeon has said theyr worrien but nothin he can do so go on with them and keep taking my medication n just deal with it great help pains in head dizzy when put hed back total just feel crap but yet its nothing to do with my chiari
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  • Posted

    Decompression surgery does not get rid of cause because it is meant to only create more room in the junction where the hindbrain and spinal cord meet, and medicine is a bandaid and also does nothing to remove the cause.  I had decompression surgery with no relief from symptoms, but then had the surgery that removes the cause: filum terminal dissectum.  Think of Chiari (hindbrain tonsils) as a cork that is reducing flow in that area and is caused by the tight spinal cord pulling down on said hindbrain...if you release the tightness on the hindbrain you now are on the way to upward migration of the hindbrain.  Dr. Paolo Bolognese, and New York neurosurgeon used followup MRI's on hundreds of patients having had the release surgery (filum terminal dissectum) and average of 3.5 mm upward migration of Chiari herniation!!!  With Chiari being medically described as 5 mm, that is nothing short of miraculous.  After I had the release surgery (Dr. Salvador in Spain) I eventually got out of the bed after 2-1/2 years and am living life fully!  Three doctors in US do this: Dr. Heffez in Wisconsin, Dr. Fraser Henderson in Maryland, Dr. Bolognese; one in Spain: Dr. Miguel Salvador.  Do your research and NEVER GIVE UP.

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    • Posted

      Where in Wisconsin do they perform this procedure, can you give me name of the doctor hospital city and phone number? Why did you go to Spain instead of some where in the USA?
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    • Posted

      Wisconsin Chiari Center in Milwaukee: Dr. Dan Heffez.  The wait list for the initial visit, then the pretesting, then the pre-surgery visit, then the surgery, then the post-op appointment would take 12 or more months to have said surgery per the three US neurosurgeons.  Additionally, depending on where you live, the travel and lodging costs add up quickly.  I was fortunate to live near a major city in the South, so I was at least able to get the pre-testing done easily and affordably (no travel).  However, the rest of the process would have required me and my wife to travel, again for at least another three separate trips.  Whereas the process to Spain, once I had the local pretesting done, was all handled there in Barcelona in the 12 days we were there.  So, one trip to Barcelona as opposed to, at least three trips to US neurosurgeon.  Plus, Dr. Royo Salvador is the neurosurgeon who discovered and perfected this Filum surgery, so my wife and I felt more at ease going there.  From the time we decided on the Barcelona process in June of 2016, from passports/air travel, from pretesting to the trip there and back was 6 weeks!  Most professional medical atmosphere we have been around since I started dealing with the Chiari journey.  This journey included 7, yes 7 neurosurgeons and 5 neurologists.  Do your homework, and if you decide to go down this path, make sure it is the best fit for you.  If you live close to one of the US doctors that does this surgery, that may be better for you.  God Bless, Steve

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    • Posted

      Cant see me flying to chigargo for an operation being a mother of 2 my partner couldnt get time off his work for it either so guess i just need to deal with it
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  • Posted

    Sent a reply, but for some reason it was not posted.  From the time my wife and I decided on Spain for the surgery (we live in Mississippi) it took 6 weeks for passports, plane tickets, and pretesting, the actual surgery in Spain, the post-op visit there and the trip back to the US.  Ironically, It would have taken up to a year or more to do the surgery here in the US because it would have required 4 separate trips to New York or Maryland or Wisconsin for initial visit, testing there, pre-surgery office appointment, then surgery.  One trip to Spain for all the same (pre-testing done here in Mississippi).  A GoFund set up by church and friends helped offset costs.  Dr. Salvador, in Spain, is the neurosurgeon who started doing these surgeries and then perfected the process, with the US following suit almost a decade later.  We should start to see more awareness and more education and more neurosurgeons with the mindset of getting rid of the CAUSE with the 45 minute Filum dissection surgery as opposed to the 5 hour traumatic cranial decompression.  I have had both surgeries and would never have had the decompression had I initially done my homework about the safe form of tethered cord surgery that got me out of bed after 2-1/2 years and is now allowing me to serve others, raise my children and forever know that the CAUSE is gone. You are worth it, so do your research now, that way if you ever decide you cannot live with sickness anymore you know what the process is.  God Bless, Steve

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    • Posted

      Steve, you mention that the film dissection surgery is for  “tethered cord syndrome” which can be a comorbiity to chiari for some patients. I do not have a tethered cord issue (I mentioned this to my neurosurgeon and he wasnt concerned about me having a tethered cord, he said I don’t have one but I’m not sure how he came to that conclusion), but is a filum dissection surgery only for patients who suffer from the effects of tethered cord syndrome? 
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  • Posted

    Current US accepted rate of 15% of Chiarians can find that their syndrome is caused by a tethered cord, ie a downard pull on the hindbrain causes the Chiari. However, many patients find that after an MRI to check for tethered cord, the result is "negative", when in reality OCTS (occult tethered cord syndrome) is a growing accepted entity...the tightness of the spinal cord is indeed pulling down on the hindbrain causing the herniation. Dr. Royo Salvador, a neurosurgeon at the Institute of Chiari in Barcelona, Spain found that doing the tethered cord surgery for patients (they also had Chiari) with scoliosis, syringomelia and tethered cord, symptoms for Chiari either were impoved or would go away. He then started doing a less traumatic form of tethered cord surgery for said Chiari, and again the results where dramatic. He feels that MOST Chairi herniations are caused by a "tight" spinal cord, not a mere 15%. My MRI came back negative, buy I am living proof that this surgery not only removes the cause, but can allow the herniation to migrate UPWARDS as shown by the follow up MRI's that a neurosurgeon (Dr. Paolo Bolognese) did for hundreds of his patients that he also did the Tight Filum Terminale Sugery on. Research!

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