I don't really know how to put this so please don't take it as me being hateful.
we are all effected by the chiari monster some how or we would not be here,
so I am just wondering what did you or do you expect the outcome to be?
have your expectations been met?
if not what has come up short?
would you do it again?
I have not had mine fixed yet and I don't see the ns till November I am hoping he recommends surgery as crazy as that sounds and scary as it is but at this point I am just hoping for a better life after its done I am not expecting 100% fix just better with out being on meds all the time.
I had the surgery in Sept 2011 and it did way more than I expected. I was given a 50/50 chance of surgical success. I was diagnosed with acid reflux disease as a baby and was told I had to learn to live with it. I was diagnosed with Chiari, had the surgery and it not only got rid of my Chiari symptoms for 2.5 years but it got rid of my acid reflux. I haven’t had heart burn or indigestion since my surgery.
Unfortunately most of my Chiari related symptoms have started to return and I am again unwell but, the relief was awesome while it lasted.
Thank you. I’m sorry that you are having to go through the roller-coaster ride that is life with Chiari. When it comes to surgery, make sure you weigh your options carefully, I had been suffering with an ‘unknown illness’ for 2 years prior to my diagnosis and anything that might help I was willing to do. Ask lots of questions and be sure you are comfortable with your surgeon.
I knew going in that surgery was a treatment and not a cure. I knew that some people had great success and others saw no benefit or even had symptoms get worse. So basically I was just at the point where I was willing to take the chance. I figured it was worth a try and if the symptoms didn't improve then at least I could hope the surgery would prevent things from getting worse down the line.
I would say my expectations have been exceeded. Pretty much all of my chiari symptoms improved and some disappeared completely.
I wouldn't really say anything has come up short. I have other medical issues that cause me trouble but I would say my Chiari issues are under control at least 90% of the time!
If I had it to do over I would definitely do the surgery again. I know people have symptoms return even years after surgery so I'm aware that mine could come back to but even so I've had 2 good years so far. I've gone to concerts, taken hundreds of hikes, started running, spent quality time with friends and family, and so on! It's been worth it just for that!
I am glad I had the surgery. I fee 10x better than before. I am not sure things are normal, not really sure what that means. I never regretted my decision. I am 7 months post op. I still have numbness. You will always worry when is it going to come back.
This is all really new to me. I was just diagnosed with Arnold Chiari malformation and a syrinx from T11-L1. I am having MRIs of my brain and Thoracic spine tomorrow to look for any other syrnixs and/or tumors. I do not have a syrinx in my cervical spinal cord. I have had pain since August and when this all started I could barely walk and tingling sensation in both arms and legs. Yesterday, I had an episode while I was lying on my back where I had so much pressure in my head and throughout my body and I could not move my outstretched arms. I told my husband this and said “really!!??”. Like he didn’t believe me. I was so upset. I finally got him to move my arm onto my stomach and then I could move it. I then used that arm to move the other arm and thank goodness I can move both of them fine, but it was scary. Just wondering if anyone has experienced this before.
I am kind of in the same area as you are, but I have surgery scheduled for Friday. For me, some of my expectations have already been met. Just having the diagnosis in and of itself has caused great relief for me. This weird assortment of symptoms that should be far more common in an 80 year old is so much easier to explain with a title and clear description. My NS recommended surgery from day 1. I was a little more hesitant to reach the decision because I've never had ANY medical problems, not even a broken bone or stitches. I've never had children or spent the night in a hospital. Ultimately insurance got the better of me and I decided to have it done this year before I have to re-pay my whole deductible again.
I am cautiously optimistic that even if the other symptoms stay the same, if the sharp stabbing pains I get with strain and position go away and the migraines are less frequent, I will call it a success. For me it's not about a "cure" but about stopping the pain and progression of symptoms. I understand that I may never regain my balance or fine motor skills or memory. But even with where things are now, if the progression is slowed or stopped, it will be a victory for me!
I wish you all the best in your crazy journey (because it WILL be a little crazy!!)
I’m having mine done at Ohio state neuroscience center. The NS said it would be a 2-3 day hospital stay then several weeks at home. I will do my best to keep you updated. I also want to keep pictures because about the only ones I have found are from like 10+ years ago!!! Where is your NS?
My NS would go over the report and then look at the discs of my scans during my appointment. I think it's best that way because it's fresh in their mind and they can show you things they see on the disc!
youngguy78 said:
he is in Cincinnati he is supposed to be one of the the best but who knows, so far I am not happy with his office due to lack of communication. for example he sent me for a cine mri but don't want to see the report till I come see him, that kind of causes me concern with him if it was so important to get it done why is it not important to look at when you get the report and wait a month??? idk will find out in 10 days what he has to say. good luck to you with all this.
Have you seen anyone in the practice yet or will this be your first appointment? If you've been seen then I would be concerned but if not then I don't think the nurse was out of line. It's really a liability issue to hand out advice to a patient your practice has never seen before and most doctor's offices won't do that. I also took the response about the doctor to mean she could switch you to another doctor in their practice if you'd be more comfortable, but needed to know so you could get in with someone asap.
If you've not had your initial appointment then keep in mind you will go over so much in that appointment and have so many questions answered by the actual NS! I know it's frustrating to wait when you see the report and know something is wrong.
If I remember correctly your appointment is with Mayfield. I saw Dr. Ringer at Mayfield and I really can't say enough nice things about him. He didn't read my CINE until my appointment but when I got there he spent well over an hour answering all my questions and showing me things on the disc. After my surgery the nurses were great. I called then for every little thing and they were so helpful. I had an issue in which I was allergic to the glue they used to seal my incision and the main nurse Nancy had me email her pictures every single day of the incision so she could keep an eye on it because I was out of state!!!
My appointment lasted about an hour and half. They were really thorough and didn't rush me at all. They will go over the test with you and tell you what everything means. If possible I would try to carve out more time because if it's like my visit they really go over a lot of things!
I would try to give them a LITTLE wiggle room, but just a little. Also, for future testing, try to get your scheduling really close together! If you have to schedule an MRI, schedule the follow up for a day or two later, if they can't do the same day. For me, it's somewhat easier because I can convince them that I'm not able to drive 4 hours round trip so many times. And sometimes, the nurse is a little more.....off-putting... than the doctor. Just take it as a learning experience! In the end, if you're still not comfortable, find a different NS. You're the one with the power and you should be comfortable with your drs.
I was the total opposite. The first NS I saw rushed me and said to call if I decided to have surgery and he'd answer questions later so when this doctor was willing to spend over an hour with me I was grateful. Honestly I've never had a doctor review a test result over the phone...especially never having met me. #1 without seeing you in person they really don't know if you are understanding what they are telling you. #2 HIPPA makes things very tricky and most doctors prefer to see people in person for that reason. They don't know who is listening in or even that they are actually talking to the patient (anyone could call and say they were you) by phone. I work for a doctor's office and HIPPA violations are serious business...it's not worth taking a chance.
I'm not saying that I can't see where you are coming from but at the same time I just know working with doctor and seeing a lot of doctors that what you are asking for is against the policy of most medical practices. I would just hate for you not to give this guy a chance and write him off before you even meet him simply because he's following standard medical policy! Again I'm not trying to make you upset or saying you don't have a right to feel dismissed I'm just trying to present it for another side.