The road to surgery

[AllTheRightShades]

How long is the process after being referred to a neurosurgeon to scheduling possible surgery? I am getting another MRI on 1/20/14, my first MRI in 4 years since the diagnoses. I was only 5mm with no symptoms, only stomach problems. And now I have constant debilitating migraines, blurred vision, random numbness in my hands and feet, balance problems/falling, constant pressure in the back of my head and dizziness. I am often out of school because of it. (I'm a freshman high school) I read about the surgery and have researched what happens during it, what to expect post-op, pre-op, recovery, and have read many stories from this site, etc. Also, my mom is wondering how long I would have to take away from school. I am a very slow healer and have a pretty weak immune system, so if infection arises, will that cause me to be out of school longer than usual? I know I seem young and like I'm rushing into the surgery, but over the years my symptoms have been increasing significantly and I have landed myself in the ER so many times that most of the staff knows my mom and I by name. I am tired of just being put in medication that is supposed to "help" and make me sleep. As soon as I wake up, the symptoms are back. My mom and I are sure that we want the surgery. So my questions again are: How long is the process from being referred to a neurosurgeon to the actual surgery. How long will I be out of school? Sorry for the long post.

Thank you.
-Autumn

[selmaS]

  Hi and welcome to the Chiari forum.

From reading some of the stories and experiences here u can see they are all different just like we are...since u r a slow healer, I hope u have ruled out ehlers-danlos as that can be the reason for slow healing...I also have always been slow to heal, had many infections, and bruise easily....I now know it was the EDS that caused all of it....and it is a related condition to Chiari.

U will want to know if u have EDS b4 u consider surgery as it can affect how u feel and heal post op....

As for getting back to school, u should wait and see how u do, since u r slow to heal, that means what u can see, like an incision....but the nerves inside can take up to 2 yrs to heal...pushing to go back can cause set backs....no one can tell u when u will be ready....we are all different.


Make sure u r tested for ALL related and non related conditions as I said they can and will affect how u feel and heal post op.

Know u r not alone.

[girlinxile]

Did your NS order the mri? I would try to make sure its a csf flow study or cine mri because trhat would delay it if you have to have the mri and go back and have the flow study after... but I know my PCP wouldn't order the csf flow study and said it had to be the surgeon.

I am trying to think.. I want to say I was diagnosed in June.. went to NS in July and my first scheduled surgery was for August. I didn't have your knowledge and was freaking out and delayed the surgery then my symptoms got to your point quickly and I rescheduled but I know from the time I saw the NS they said surgery around a month from there because many insurance companies take 2-3 weeks to approve the surgery then you need pre op testing as well. I was originally supposed to be fully off for 2 months.. I had complications though with a patch leak and my surgeon took a wait and see approach thinking that most of those leaks heal themselves but mine didn't so I was back in surgery for a repair and am 2.5 weeks post op and believe it will probably be March before I get back to work. SO my first surgery was October 9th, second was December 27th and it will likely be March... now this is obviously not what you should plan for.. but know stuff like this happens.

Your symptoms sound pretty severe... and ideally incorporating this in during your summer would be ideal... but if you cannot make it through a day of school then putting it off would be missing school anyways. What grade are you in? How you will feel post op varies so greatly and you sound like me with the slow healing and poor immune system and the surgery is major surgery.. the variable are endless. I know I oculdn't even look at a cpu screen for about 3 weeks. Maybe you should see if transferring to an online school might help. My daughter is in online school and is a senior and she can miss 2 weeks and be able to catch that up from the comfort of her bed if need be. I'm just trying to throw out some options for you... I know after my second surgery to repair my leak I felt a million times better than after the first (of course they didn't have to cut bone the second time but the recovery ordered is all the same and it was a night and day difference). You have youth on your side... that's a bonus too.

I think you will likely get so many of these answers from your NS but applaud that you have done so much research on your own already... I wish you luck!!