Has anyone had decompression for 'atypical' symptoms?

[tortue52]

My daughter has Chiari 2 malformation, Spina Bifida, hydrocephalus (shunted) and a syrinx. She has not had a decompression. She is experiencing various symptoms that don't seem to be increasing in severity but reoccur. She has migraines that come back often and sometimes last for weeks. She is rarely headache free. She also has sudden pain/pressure at the base of her skull that radiates into her head then vomits with little warning. She also has nausea that causes vomiting at other times. She also has intermittent numbness on her left side. She is seeing a neurologist that is trying to treat her migraines with a variety of drugs. She also takes Tylonol 1 or Advil and Gravol almost daily. Her neurosurgeon does not want to do a decompression because her symptoms are atypical and he is not convinced that it would help. He suggested that she see a chiropractor and/or an acupuncturist. The chiropractor helps for a very short time but everything comes back. Has anyone experienced these types of symptoms? I think that they often dismiss her because she has a mild intellectual disability.

[selmaS]

  Deff these r all interrelated conditions...many with Chiari can have a combo of them I have tethered cord, mild scoliosis and Chiari and Ehlers-Danlos, retroflexed odontoid and instability of the cerviocranial junction.

I hope they do not manipulate her neck and shoulder area as that is going to be the most sensitive for her...

We do have other Canadians on here and a list of Drs for there as well...

[tortue52]

I live in Canada and there aren't many Chiari specialists. My daughter is 21 and she has had recurring symptoms for about a year. Her Chiropractor does gentle manipulations not the bone cracking type. The neurosurgeon is part of a team including neurologists that has assessed her when she was hospitalized for 6 weeks with major symptoms (mainly very bad headaches and constant vomiting). They did many tests at the time. I am wondering if there is a combination of factors from tethered cord, Chiari, scoliosis, hydrocephalus, etc... She is very discouraged.

[selmaS]

  Hi and welcome to the Chiari forum.

I agree with Dana that u need to talk to a Chiari specialist.....a chiropractor is not the right way to go as it can cause more damage,many times it can give short term relief....but it can also cause more compression...so it is not worth doing.

I am sure the issue is having Drs that r not experienced with Chiari, so many of us r told to take meds and get the brush off....

Please see the list of Drs the members compiles to help u get started in researching Drs, keeping in mind they r not all true chiari specialists, nor is it  a referral for ne on the list.

Let us know if u need help locating more info,, but the list is in the Health Pages as well as some tips on activities to avoid with this condition and a few others.  http://www.medhelp.org/health_pages/list?cid=186

[Viva001]

I agree with getting another opinion, from a Chiari specialist.  She doesn't have to suffer.
  A lot of us have dysautonomia, which can cause a variety of symptoms including nausea, fainting, heart palpitations, etc.  

Best of luck to you & your DD.

[Sexybare]

I was told not to go to a chiropractor sweetie for they can make it worse. Also seek out a opinion from a true chiari specialist please get other ns opinions. Sounds like your daughter needs relief and isn't getting the care she needs. This is no way for her to live. Especially with all she has going on. Please get a true chiari specialist. What's yout daughters age? Has she been suffering long? Your dr doesn't seem to be very knowledgable.