Is it possible to avoid surgery all together and remain with just annoying symptoms that are not to the degree surgery would be required in the future? Trying to avoid getting cut on as I have found that outcomes seem so variable.
My concern is I have falls, two in past year, so not that many. With good bone density it hasn't hurt anything but my pride. I am concerned when I get older.
Pat
Emmaline said:
Sure it's possible. You need to keep tabs on it so you don't do permanent damage. Have a qualified NS or NL watch it for you and make sure nothing is progressing. If you can do that and live with your symptoms that is the goal of the wait and see approach.
Some don't have to have surgery.
Some people have CM's and never even know it and lead normal lives. I believe the statistics are 17% of the population has a CM but only 3% is symptomatic. It all depends on your herniation and CSF blockage and symptoms. What does your NS recommend? I would advise you if you choose not to have surgery to keep a watch on your herniation. I was diagnosed too late and have an extreme situation that I don't want to see happen to anyone. I also have fallen a lot and broken bones and have had multi concussions. Have you ever read about POTS - Postural Orthostatic Tachycardia? It is considered a related disorder to Chiari. Wikipedia actually gives a great definition. You can at least read it and see if you are falling because of some of the symptoms. I was diagnosed in December and since I have been on medication I have only fallen twice. I now know what to look for and to keep hydrated and keep my sodium levels up and I take medication to increase mt heart rate and BP. Some with POTS has to decrease their BP & HR. POTS is a type of Dysautonomia. I have included it's definition also.
http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome
I spent a TON of time reading people's stories. What I saw as a pattern was people who waited too long in their progression to have the surgery seemed to have less success than those who chose the decompression earlier on. I was just diagnosed last July. My first CINE MRI (September 2012) showed "some CSF blockage." I kept track of my symptoms after the new year using an app called "symple." I noticed that despite multiple approaches to relieve my symptoms, things were getting worse and new symptoms were developing. When I had my new CINE MRI (April 2013 - 7 months later), it showed "complete CSF blockage." I'm 35 years old and have 5 beautiful children ages 5-11. I chose to have the surgery right away as I wanted to avoid permanent neuro damage if at all possible. Granted I do know that surgery in and of itself carries multiple risks, but I tried to put everything in a balance in my mind. I decided that I would rather have surgery in hopes of being back to "my old self" within about a year rather than keep watching and waiting to see how bad things might get. As it was, I was nearly bedridden anywhere from 1-4 days out of a week. My husband and I decided facing the hard thing of surgery and the recovery time was worth the hope of having me back after that. I had from the beginning done my research on where to go. I chose a NS who is one of the top 5 in the nation and specializes in Chiari. I know surgery is scary, but for me...not being able to be the wife and mother I want to be was even scarier. I'm 18 days post op and it is difficult but I have already seen the relief of some symptoms and am excited to see how many more will improve with time.
I have been to one NL and two NS and the NL was condescending and dismissive, one NS said symptoms don't progress and the other said that surgery is basically elective. I have to decide what I can live with. Please correct me if I think that is a cop out. I also want to avoid surgery as it sounds terrifying and does not necessarily mean it will help me. I understand that there are no guarantees in life, but I am not the expert on this and that is what I look to a NS for.
I started to keep a pain journal, but I was constantly writing in it. I go through dozens upon dozens of pain incidents a day....from bending over to tie my shoes, to coughing, to laughing, to blowing my whistle when I ride my bike, to opening a window. The pain is intense, but only lasts for seconds. Can I live with that the rest of my life? I know that my symptoms have progressed. I have blacked out twice from laughing too hard and sometimes get vertigo when I blow my whistle too hard (not good on a bike). I just don't know what to do from here. I am looking for answers that I can't find.
Or maybe I'm just being difficult patient? I feel that the docs sometimes think so because I question everything. He said he would remove the C1 and when I asked what that would do or cause, he basically said nothing and then I asked, why do we have it then?, he seemed annoyed.
I opted out of the surgery and while the symptoms can be both annoying and painful. I've heard good and bad on both ends. My father has friend with chiari and he had the surgery and he was doing better before surgery. Since hes had it he cant turn is head to the right and is in constant pain. My symptoms havent necesarily gotten worse and i dont have them anymore often than normal. I was diagnosed when i was 12 and im 25 now so in 13 years i havent had any worsening of my symptoms and im holding out hope it will stay that way because like you i would like to avoid being cut on as well.
I do not have fluctuations in heart rate nor BP but do have periods of discoordination and balance issues and down I go.
Patty
TracyZ said:
Some people have CM's and never even know it and lead normal lives. I believe the statistics are 17% of the population has a CM but only 3% is symptomatic. It all depends on your herniation and CSF blockage and symptoms. What does your NS recommend? I would advise you if you choose not to have surgery to keep a watch on your herniation. I was diagnosed too late and have an extreme situation that I don't want to see happen to anyone. I also have fallen a lot and broken bones and have had multi concussions. Have you ever read about POTS - Postural Orthostatic Tachycardia? It is considered a related disorder to Chiari. Wikipedia actually gives a great definition. You can at least read it and see if you are falling because of some of the symptoms. I was diagnosed in December and since I have been on medication I have only fallen twice. I now know what to look for and to keep hydrated and keep my sodium levels up and I take medication to increase mt heart rate and BP. Some with POTS has to decrease their BP & HR. POTS is a type of Dysautonomia. I have included it's definition also.
http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome
I have two comments:
1. Not all surgeons are equal- if you want to "compare", look at outcomes from a particular surgeon for a particular surgery, not just a particular surgery. Dr. Fraser Henderson has an amazing success rate for Chiari surgeries.
2. That being said, the longer you wait or the worse you are when you have the surgery, the less likely it is that the"symptoms" will go away or get better. This is because we are talking about the brain and nerves, etc., and when the brain or nerves are pinched or damaged, they do not always regenerate, no matter how skilled the surgeon. Sometimes Chiari surgery can only prevent the condition (& your symptoms) from worsening.
*******
If you're interested here's my experience:
I had Chiari surgery w/ Dr Henderson 6 months ago & my symptoms are nearly gone- I am much better.
My daughter had surgery first, but her symptoms were MUCH worse by the time we found out what was wrong & she still has some symptoms, which she may have forever. (i.e., numb leg)
I also spoke with many people before deciding to let my daughter be operated on by Dr. Henderson (she was one of his last pediatric patients - long story- has to do with the hospital closing a pediatric unit, not Dr. Henderson). I spoke with my two neighbors who also had Chiari surgery with Dr. Henderson, one of whom is a nurse, as well as others. They all had positive outcomes.
Also, I talked to people with Chiari who did not have surgery at all or did not have surgery with Dr. Henderson or another very skilled, specialized surgeon, and they usually are worse then they were before and regret their decision.
********
In the end, you have to make the best decision for you.
I have found boards like these to be invaluable in helping me to make that decision. Good luck
My symptoms started when i was 12 although back then they had no idea about this condition they did multiple tests on me and came up with nothing, i wasnt able to do sports because of the headaches, as an adolescent i did so many drugs and drank so much that i couldnt tell you what those years were in terms of pain it really came back at age 25 when i got married had children and settled out of the party life, they thought it was just a slipped disc, many steriod shots etc.. symptoms continued to get worse the numbing of my limbs and the scary boughts of becoming temporarily paralyzed by what i called a krink in my neck still nothing, a nurse who used to work for a neurosurgeon at the pain clinic finally ordered the right test as she suspect something was going on with my spinal fluid and she was right. i contemplated waiting but the symptoms seemed to just be getting worse and since i am still young 35 i wanted to have the best chances of a good outcome, 3 weeks post surgery i couldnt be happier i made the choice. i feel better than i have in 8 years aside from neck pain from the neck muscles healing all other symptoms are gone, no headaches, no numbing, no back pain. each person is different in their journey and each surgeon is different. i doubted mine at first and i am SOOO glad i did some more research on him and scheduled a second appt and then the surgery he is the best my area
Good luck!!
Broken1977,
My story is very similar to yours. I had symptoms for a long time and didn't discover what was wrong with me until recently.
But my daughter (at 16) was so much worse than I was (at 30) that she hasn't had the results that I have had from the surgery, although her symptoms are better than they were before the surgery. My daughter would have both surgeries again (Chiari & tethered cord); we just wish she could've had them sooner. (It took a long time to diagnose her).
So each individual is different, with different results.
I second your advice about researching your surgeon; the surgeon you choose is very important for this surgery.
I don't have symptoms nearly as bad as some people and I really feel like I lean more towards having the surgery. I have a herniation of 10mm with what I consider mild symptoms (in comparison to what stories I read) I am in pain daily but I do know that it could be so much worse. I was only just diagnosed 8 months ago but from most of the research that I have read it seems to me that you do stand a better chance of avoiding more problems if you have the surgery early. However so far in my experience that is going to have to wait bc I don't even have a NS yet. Can't have surgery without that!!! Lol Hopefully I can remedy that very soon.
I was diagnosed about 7 years ago and just have annoying symptoms. Sometimes I have breathing issues but that just happened about a year ago. I went to a NS and he said if I don't need surgery he can't help me. Along with NL's telling me int he past that my symptoms have nothing to do with CM. I am just going to moniter my symptoms and see what happens along the way. I don't have any other issues these days that have been an issue. I did when I first got them full force but then they went away. So now it's just periodic symptoms. Very strange. Every one is different it seems. I know someone who has it and there Grandmother has it and she is fine. My friend had 2 surgery's and said do not get surgery unless absolutely necessary! So I would just monitor for now.
Hope you are feeling well.
Lidia
Hi all I'm new to this so bear with me please. I am a 62 year old male who was positively diagnosed with a Type 1 Chiari Malformation and associated Syrinx last September (2012)
I have been seeing surgeons in Kings College Hospital, London but am very dissapointed and disturbed by the different options and possible outcomes from each surgeon I have seen. Although initially I opted for surgery in the hope of relieving all my symptoms but since reading forums and experiences of other sufferers I am now of the opinion that there will not be a lot of improvement. What I really would like to find out is that if I don't have the surgery will the symptoms deteriorate greatly and more important what is likely to happen with the Syrinx?
Hi...
From what I gather from what I have learned is that one can use the 'wait and watch' track....have yearly MRI's to see if the herniation has gotten larger, along with yrly full spine MRI's to make sure a syrinx has not popped up, like Dodge mentioned. And naturally, look at your Sx's..keeping a long to determine how they have changed if at all.
Do you have syringomyelia? If there is a syrinx and it gets bigger, new troubles may appear. Just be careful.
Hi Allison yes I do have a Syrinx but the last NeuroSurgeon I saw reckons it won't get any bigger.
Allison said:
Do you have syringomyelia? If there is a syrinx and it gets bigger, new troubles may appear. Just be careful.