How bad do they think you need to be for surgery?

I just went to my second NS appt, and they still say that my symptoms are considered mild COMPARE to some others. I cant sleep with out 3 MAJOR medications and one I am above the MAX dose. I cant laugh or cry, my good and bad days are about 50/50, I am on NINE medications, I cant excersize, I cant play with my kids, on my bad days I fee very weak and dizzy, I go to the ER about once a month, the last time I could not stop vommitting for more than 1 or 2 min for 24 hrs, they had to give me IV meds to stop the vommitting, then a few doses of morphine and someting else, along wth a few bags of fluids to rehydrate me since the vommitting had caused severe dyhydration. Pain pills dont alway help. I am a stay at home mom of 3 that cant keep up with the house I cant do things for the kids that all parents should, I am just so tired ALL the time no matter how much sleep I get. DO I SERIOUSLY NEED TO BE IN A WHEEL CHAIR BEFORE THEY HELP ME? I know surgery has its risks, but I need my life back! I dont know how much more of this I can take.

It is up to you if you want the surgery or not. Personally, you are FAR worse than I am and I think you should go for it, if it's that bad for you. Is it debilitating and making your life miserable?

If you want that surgery, you tell them to do it. It's your body and your money and you know how you feel. They don't. Tell them to get their rear in gear or go to another NS for the surgery.

Best of luck and I hope this helps.

Find a different NS. Those are worse than my symptoms were and I had surgery 7 months ago. Good luck!! I would definitely find a different doctor.

Make them do the surgery then. I had the same thing happen. Tell me it's mild and to take Motrine, f you buddy. I told them do the surgery or I will find someone else. My life had come to an end at this point do to pain. I really hope you get the results you need!

thank you all, I am glad I am not just out of my mind. Yes I have had the CINE, the flow study showed that there was more than 2 times the normal pressure in my head, I get different answers on my measurements, one says 8 mm, the other says 12mm, and the 3rd says 7mm. I dont know what to think, but even if it didnt take away all my headaches if it could let me sleep naturally on my own that would be so amazing, it could drastically improve my life. I know there are risks and those are risks I am willing to take.

I have a question...what exactly is the CINE MRI? Is that the same thing as a CSF study - where it measures how much fluid is being able to pass thru the spinal cord and brain stem area?

To Beeba, the first NS I was reffered to, supposedly specializes in Chiari malformation, That is really good to know about the MRI's

To Melissa, this is copied and pasted from a site, hope that it explains your question

Cine MRI (as in cinema) is taken the same way a traditional MRI is, with the addition of either a wristband or EKG leads on the patient's chest to measure the heart rate. Each time your heart beats, the cerebrospinal fluid is forced out of your brain, down toward the spine in response to the flow of blood that enters the brain with each beat. The MRI machine is equipped with an additional software package that allows the images to be put together, showing the flow of the cerebrospinal fluid (CSF) as it is moving.

Cine MRI's are sometimes ordered for patients to help doctors determine the amount of CSF flow through the foramen magnum. It can be useful in cases of "borderline" Chiari Malformations or when the question of whether or not decompression is needed is not readily answered using a traditional MRI. A radiologist can determine the amount of fluid that is moving and compare that with normal subjects. Cine MRI's are sometimes useful in showing other CSF blockages as well. Cine MRI's are not readily available to all patients, and their practical use is still debated by physicians.

Hey Beeba, I noticed in your other posts you say that dr ellenbogen was the one that did your surgery, he is the first NS that I went to and he took all of about 5 mins with me and blew me off and all the studies they did at swedish when I was put in the ICU for the chiari and its problems, I was in the ICU on thanksgiving and for several days after. The second NS I went to see was the one that took care of me in the ICU and could clearly see from my study that I have ICP and chiari, was concerned about psuedotumor, but that was ruled out after an extensive neuro opthamology exam.

Thank you. The first MRI I had done was with and without contrast. The second one I had done was to measure the CSF. My NS called it a CSF study not a CINE MRI. I just asked my husband and he doesn't remember seeing any EKG leads or a wristband on me. I also had to be sedated for the second one. The first one freaked me out really bad - therefore it is possible that there were leads on me and I/we didn't know it.

Thanks for answering my question!

Cine MRI and brain flow study are two separate because I’m doing those on Monday And they added the bfs so they had to move hospitals that could accommodate it that is how I know :slight_smile: