When to have the surgery?

[mariafph]

Hi, I'm new here and I've been reading some posts (thank you everyone for sharing their own stories and suggestions!). I know every case is different. In my case I've been having symptoms my whole life - and now just realized it. But it's been three years since they've gotten worse. Headaches every day - which get worse when laughing, crying, sneezing, coughing, bending over or tilting my head backwards, vertigo, neck and back pain which is sometimes unendurable, numbness in legs and arms, pain in my arms, fatigue, losing train of thought, problems with concentration, trouble finding words, swallowing feels weird because it feels like I have something stuck in my throat all the time and I get a hoarse voice easily - I'm a girl and sometimes overnight my voice is all hoarse.

After reading (a lot - because apparently doctors don't really know the full extent of Chiari Malformation) I'm still not completely sure when one's supposed to get the surgery?

I've read it all depends on the patient's symptoms and the doctor's suggestions...
I've had appointments with 3 different surgeons. The first one said my only option was surgery (to alleviate the symptoms). The second one said that the only symptom is having headaches (which I thought was weird seeing as I've read in medical journals and threads that there can be many other symptoms - which I have). The third one said he wouldn't operate, and that he would rather wait until "more symptoms" came along (like double vision and not being able to lift things...which translated into real life terms is "wait until it gets worse", right?)

So now I'm confused and just wanted to know how did you guys know it was the right time to have the surgery?

[Elisaandbucky]

Hi Maria (?). It sounds like you are carefully considering your options. There are so many doctors (as I have seen from reading and following threads here) who do not keep current with the newest literature in their fields of study, let alone, something as specific as Chiari. As Semantic mentions above, surgery for Chiari is for restoring the flow of cerebral spinal fluid. When you have a cine- MRI, the flow is examined. Symptoms may be relieved somewhat, but the main consideration is to restore good flow. Something that will prove helpful to you when you go to see a specialist is to have a detailed symptom and pain severity journal. It is difficult to be able to remember everything that you will want to mention in an appointment. Having things on paper can reduce this stress. Please post back on any updated information you may get and,  keep current with reading the posts here. I have learned so much from visiting this forum regularly. I hope you are able to rest. These symptoms can be exhausting. I wish you luck with your research.

[selmaS]

  Hi and welcome to the Chiari forum.

You are right we are ALL different....but the one reason to have surgery is if you have a CSF obstruction as surgery is done to restore CSF flow, so if the flow is ok the surgery will not help anything....surgery is not done to relieve symptoms, we only hope it will...it is done to help prevent the progress/formation of a syrinx which when left untreated can lead to paralysis or perm nerve damage.

Make sure you have been seen by a true Chiari specialist and that ALL related conditions were ruled out as so many of them can cause the same symptoms...a CINE MRI to see if you have an obstruction of CSF and check for a syrinx so a complete spinal MRI...and testing for EDS....and all the others as I said....

Chiari symptoms flare and cycle...so we feel compelled to find a Dr when in a flare...and as symptoms dissipate we give up or wait...

Educate yourself on Chiari and the related conditions so you will know when you have found the right Dr and having the right Dr is key!!