Aa
Scared of surgery
Hi, i was told i had CM 1 last dec 2009, i have seen my NS a few times and he has left it to me to decide wether to go for surgery. All i seem to read up about is people who have had decomp surgery and have probles afterwards. Is there anyone here who has had surgery without any post op problems?
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
Being scared like Wolf said is normal....this is a major surgery and has it's risks...there r risks not to have it also....
It really all depends on if u have a good surgeon u r comfortable with, and what ur current condition is...do u have a CSF blockage that could cause a syrinx to develop....are ur symptoms manageable....and r the symptoms stagnant?...(not progressing)
The reason u hear stories of disappointment , IMHO is that these patients went to a non chiari specialist that said they could be fix or cured,...there is not cure, only a means to slow progression.This is a life altering condition, so once it is active and symptoms increasing....u need to find a NS with chiari experience so u r comfortable to make this decision....
Once ur dr can say, we can slow the progression and help avoid perm nerve damage now, and u will see this % of benefits...and there is a possibility we will only stop progression...that is a more realistic comment then u will be cured or fixed......
U know ur body and how slow or quickly u heal, u know ur pain tolerance....and u know ho wu fair on meds....this should help u know how u may respond....however, chiari does cause our med relations to change ....I had several surgeries prior to my chiari surgery and found on the one prior to the PFD that I could not longer take oxycodone...I am now allergic...and it worked well for me b4....so , it is possible to have some adverse reactions to meds or the over all procedure that u can not be braced for......
Knowing it and not having too high of expectations will help...and also checking for related conditions to chiari that could be also causing symptoms is also the best way to go into this procedure.
I agree with Wolf and Carolyn, that this was something I needed and would do again.....I still have some issues and symptoms, but I had them my whole life and am aware surgery is not like a light switch that can turn off the bad chiari symptoms and expect to be better that I ever was especially in a short time frame....it is a bumpy journey...but we have each other to help us thru....and the friends and family I have from this community is what helps me get thru and I pray u find that here as well.
"selma"
Being scared like Wolf said is normal....this is a major surgery and has it's risks...there r risks not to have it also....
It really all depends on if u have a good surgeon u r comfortable with, and what ur current condition is...do u have a CSF blockage that could cause a syrinx to develop....are ur symptoms manageable....and r the symptoms stagnant?...(not progressing)
The reason u hear stories of disappointment , IMHO is that these patients went to a non chiari specialist that said they could be fix or cured,...there is not cure, only a means to slow progression.This is a life altering condition, so once it is active and symptoms increasing....u need to find a NS with chiari experience so u r comfortable to make this decision....
Once ur dr can say, we can slow the progression and help avoid perm nerve damage now, and u will see this % of benefits...and there is a possibility we will only stop progression...that is a more realistic comment then u will be cured or fixed......
U know ur body and how slow or quickly u heal, u know ur pain tolerance....and u know ho wu fair on meds....this should help u know how u may respond....however, chiari does cause our med relations to change ....I had several surgeries prior to my chiari surgery and found on the one prior to the PFD that I could not longer take oxycodone...I am now allergic...and it worked well for me b4....so , it is possible to have some adverse reactions to meds or the over all procedure that u can not be braced for......
Knowing it and not having too high of expectations will help...and also checking for related conditions to chiari that could be also causing symptoms is also the best way to go into this procedure.
I agree with Wolf and Carolyn, that this was something I needed and would do again.....I still have some issues and symptoms, but I had them my whole life and am aware surgery is not like a light switch that can turn off the bad chiari symptoms and expect to be better that I ever was especially in a short time frame....it is a bumpy journey...but we have each other to help us thru....and the friends and family I have from this community is what helps me get thru and I pray u find that here as well.
"selma"
Welcome to the forum,
It is totally normal to be nervous about surgery, it is a big deal and does really need to be thought through carefully. I guess in a way, I am glad that by the time I knew what was wrong, I didn't really have a choice but to do the surgery. I had an extreme difficulty with my gait and I was worried that I would end up not being able to walk at all.
Yes, there can be complications but that goes for any surgery. For me, I didn't have any complications for surgery, no leaks, infections etc...but it was a very difficult surgery to recover from, I'm not going to lie.
The thing is when I got out of bed 2 days later and walked...my gait was majorly improved!! That to me just confirmed that I made the right decision. You have to realize though, the surgery is not a cure but the goal is to make sure your symptoms don't get worse.
So when you are trying to make a decision...keep in mind your NS recommendations.. did he/she say what they thought you should do? Then you have to look at your symptoms and your quality of life and whether the risk of surgery is worth it to stop the progression. You also have to realize that the longer you wait, more damage can be done and could cause damage that can't be reversed. I waited too long just b/c I didn't get the dx quick enough and so now I am dealing with damage to my nerve and muscle and I am having to enter rehab to try and gain some of that back.
Like Wolf said, what you hear for the most part here is accurate, it is not an easy surgery and the recovery isn't easy either so prepare yourself. You will need to have a good support system while you go through the recovery. However, all that aside I would have done the same thing again in a heartbeat.
Take care and good luck with your decision!
Carolyn
It is totally normal to be nervous about surgery, it is a big deal and does really need to be thought through carefully. I guess in a way, I am glad that by the time I knew what was wrong, I didn't really have a choice but to do the surgery. I had an extreme difficulty with my gait and I was worried that I would end up not being able to walk at all.
Yes, there can be complications but that goes for any surgery. For me, I didn't have any complications for surgery, no leaks, infections etc...but it was a very difficult surgery to recover from, I'm not going to lie.
The thing is when I got out of bed 2 days later and walked...my gait was majorly improved!! That to me just confirmed that I made the right decision. You have to realize though, the surgery is not a cure but the goal is to make sure your symptoms don't get worse.
So when you are trying to make a decision...keep in mind your NS recommendations.. did he/she say what they thought you should do? Then you have to look at your symptoms and your quality of life and whether the risk of surgery is worth it to stop the progression. You also have to realize that the longer you wait, more damage can be done and could cause damage that can't be reversed. I waited too long just b/c I didn't get the dx quick enough and so now I am dealing with damage to my nerve and muscle and I am having to enter rehab to try and gain some of that back.
Like Wolf said, what you hear for the most part here is accurate, it is not an easy surgery and the recovery isn't easy either so prepare yourself. You will need to have a good support system while you go through the recovery. However, all that aside I would have done the same thing again in a heartbeat.
Take care and good luck with your decision!
Carolyn
You may or may not realize this but the concerns expressed here are really very normal. This is a serious surgery, you should be certian and confident of your dx and your NS. No one, not even your Dr can really tell you the best time to have this operation. Not trying to add stress but only you know how life limiting this thing really is for you. All the MRI's etc can't tell the Dr this, thus rightly you should make the choice.
That being said it does go against human nature to say "ok you can cut me up now". But think calmly, sit down and write out the limiting symptoms that you have now. Will waiting make things worse and slow your recovery of those symptoms? Don't stress just try your best to think realistically.
That said, I had 43+ and growing symptoms a year ago. Now my only problem was not Chiari but it was the main problem. It's been a long road but honestly I have more good days than bad now. I can honestly say that my HA are no where near what they where and most of thos symptoms are gone completely. I still 'deal' with occasional dizzy spells, HA, tremors and neck/back/shoulder problems. But before it was every day, every single day. In all honesty NO the surgery is unlikely to take away all your symptoms and yes there is risk involved. In my case they only realized how bad it was after cutting into me. Turns out if I'd waited much longer... well I most likely would not be typing this. I did have other issues complicating the Chiari though.
So follow your heart, don't worry about what others experience is with this one. It is not like buying a new car so you read others reviews. This is your God given body with all it's inherint imperfections. Your case 'will' be slightly different than the next.
In case you are wondering- If I had it to do again, the only thing I'd do differntly is have the surgery sooner.
Wolf
That being said it does go against human nature to say "ok you can cut me up now". But think calmly, sit down and write out the limiting symptoms that you have now. Will waiting make things worse and slow your recovery of those symptoms? Don't stress just try your best to think realistically.
That said, I had 43+ and growing symptoms a year ago. Now my only problem was not Chiari but it was the main problem. It's been a long road but honestly I have more good days than bad now. I can honestly say that my HA are no where near what they where and most of thos symptoms are gone completely. I still 'deal' with occasional dizzy spells, HA, tremors and neck/back/shoulder problems. But before it was every day, every single day. In all honesty NO the surgery is unlikely to take away all your symptoms and yes there is risk involved. In my case they only realized how bad it was after cutting into me. Turns out if I'd waited much longer... well I most likely would not be typing this. I did have other issues complicating the Chiari though.
So follow your heart, don't worry about what others experience is with this one. It is not like buying a new car so you read others reviews. This is your God given body with all it's inherint imperfections. Your case 'will' be slightly different than the next.
In case you are wondering- If I had it to do again, the only thing I'd do differntly is have the surgery sooner.
Wolf
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