Chiari Malformation Community
Quality Of Life Better After Surgery
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Quality Of Life Better After Surgery

I am listening to all the stories and I would like to know does anybody feel the surgery was
totally worth it and has their quality of life improved after surgery.  
40%
 (2) 
Yes
40%
 (2) 
Somewhat
20%
 (1) 
No, not really
5 Members voted
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18 Comments Post a Comment
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1179332_tn?1297482590
Right now I only say somewhat b/c even though my legs have improved...I still have a lot of pain, some headaches and many symptoms are still there from before. I am awaiting my 6 month MRI to see how successful the surgery has been. So...my answer may change down the road as things continue to heal and improve.
One things is for sure I am still 100% positive that I needed to have the surgery done..the main thing is prevention of any more progression!!

Carolyn
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620923_tn?1393294254
Ditto...I had my 6 month post op in Dec, but I do have other related conditions....so hard to say when I have symptoms, but the surgery has stopped progression and I did need the surgery...drop attacks have stopped so far...and that is a plus : )

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Avatar_m_tn
I think the success in Chiari Surgery all depends as to the degree one is suffering.  I myself was told without the Decompression Surgery I was not going to live long, I was herniated at 18mm.  Althought my Surgery was somewhat of a failure I am still alive and look for additional Surgery to hopefully eliminate some more symptoms which all came back afterwards.  I will never be who I once was but I have a loving family andwife who help me along.  
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1179332_tn?1297482590
I totally agree...the outcome shouldn't really be measured by what symptoms have been resolved...it should be measured by what it prevented from happening in the future. That is why I would never regret doing the surgery even if I had every single symptom that I had before...at least I can walk and am here for my husband and children :)
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620923_tn?1393294254
Hi and welcome to our chiari forum and our little chiari family.

I am so happy u found us and r willing to share ur experiences with us, and I am so sorry that u r yet one more affected by this condition.

I agree too, the surgery helps this from progressing, but we may have to deal with symptoms we had b4....I was told to expect to continue to have chiari symptoms as I still have chiari.....

Again, glad to have u here  ; )

"selma"
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Avatar_f_tn
I'm still recovering, but do not at all regret having surgery. I am so grateful to have my life back, even if not completely yet. I already feel an enormous difference! Long way to go, but feeling optimistic for the first time in years. I had to vote a resounding YES because my life isn't what it was yet...but I am so hopeful that it will be soon!

Rosemarie
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1974023_tn?1325984002
I had my surgery 12-17-10 and was the best thing I could have done. The only thing I have to deal with now  is migrains every now and then but 1-2 a month is much better then 3-4 a week. I felt better when i woke up from my surgery . My husband laughs when ever we talk about it when I woke up I said look I can move my arms with no pain. I had my surgery on a Fri and came home on Sunday so a year later still very good.  The only thing bad about the surgery was being fired from my job when I said I had to have surgery. The other good thing is I only take one pill now much less then before surgery.
Huskys2
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620923_tn?1393294254

  Hi and welcome to the Chiari forum.

Thank u for sharing ur post op  experience with us....sorry u lost ur job, many of us also lose our jobs during this process of surgery and recovery as some require more time to heal then others and some have developed issues post op and it takes a bit longer then originally projected.

  It is good to hear u r doing much better then b4 surgery....

  may I ask, did u not have FMLA benefits where u worked?

     "selma"
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Avatar_n_tn
Hi. I had decompression surgery in May 2010. My quality of life has improved greatly, but lately I have been having a dull headace at the back of my head, with neck, shoulder and back pain/discomfort. Could I be having acm symptoms? A muscle relaxer seems to give me as much relief as the expensive migraine medicine.
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620923_tn?1393294254

  Hi and welcome to the Chiari forum...
.......it is possible that u had scar tissue form.....have u been checked lately?..when was ur last MRI?

Did u have a syrinx?..if so, do u know did it shrink post op?

     "selma"

  
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Avatar_m_tn
Hi!
I too had a chiari decompression surgery in January of 2012.  The graft leaked and I ended up having to get a vp shunt as well.  Since the placement of the shunt I have developed neck and shoulder spasms.  They come and go throughout the day with the mornings being the best part of the day.  Does anyone else suffer with this?  I was told that I needed the decompression surgery because I had a large syrinx that kept getting larger and I developed numbness in my left arm and hand.  Since the surgery the numbess is slightly better in my hand but is still there in my arm.  I decided to write because I have been going to physical therapy, getting massages, taking meds all the time and the neck spasms do not seem to be improving...  I am just getting frustrated...  Anyone have any advice?  Thanks for your time.
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3072999_tn?1356418332
I had my decompression surgery on 7/10/12. I do not for one minute regret it! I feel SO much better than I did prior to surgery. For me a headache was the norm an I just dealt with it. Now it is a rarity and I can usually trace it back to the root cause (not eating, over doing it, etc.)
I am still healing and recovering so I am not completely 'normal' yet, but is anyone ever really normal? LOL!!
I have to vote a complete and utter YES!!! My surgery, for me, was completely worth it and my quality of life has improved ten-fold!
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620923_tn?1393294254

  Hi and welcome to the Chiari forum.

Many that develop these issues/leaks find out post op they also have EDS and sometimes that plays a factor ...as to what type of dura patch was used,....those with EDS have a higher risk to reject foreign matter and if the patch was synthetic bovine, cadaver it may be y u r having issues....this is not always the case, but so many that have had this issue have been dx'd with EDS afterward instead of b4 surgery when they could have prevented using  nething but their own pericardium for the dura patch.

Some have gone in and had the patch replaced, but continue to have issues as EDSers tend to heal slower too....

Not saying this was ur issue but something to look into.....
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Avatar_f_tn
My son had surgery to correct his Chiari 06/2003. He was 5 years old. It was the best thing we could have ever done! He has not regained full use of his hands, but the headaches are gone. His life really did not begin until after his surgery. His headaches were too severe, and it took 3 years to get a diagnosis. All the pediatricians we had seen would not respond to my knowing there was a problem. After changing, we finally found one, that would listen, had an MRI immediately, and had surgery within 2 months. If he had not had the surgery, he would have been paralyzed eventually from the neck down. We are truly blessed, and it is because of the surgery.
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620923_tn?1393294254

  Hi and welcome to the Chiari forum.

Thank you for sharing ur DS's Chiari journey with us...it is good to hear how surgery has helped others especially when many here r considering surgery for them self.

May I ask, did ur son have a syrinx as well as Chiari that he was and continues to have issues?

So very glad ur son is doing well and I pray he continues to improve <3

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Avatar_f_tn
hi my 16 years old daughter has just had surgery on the 18 th jan 2013 and although everything seemed to be fine in hospital and she was getting better i brought her home after 5 days which was great but we are now on the 8th day and shes getting worse and head pain she said is worse than before. I am worried after reading everyones symptoms that there is a problem and i need to take her back in and have them do some more tests to see what is going on and also she puts her head forward and her nose runs. would love some advice please x jenelier
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4689100_tn?1358801534
Somewhat. I can't really say that I regret having the surgery though. But after 2yrs. thought would be much better, somethings improved for about 8-9 months, then pretty much everything was and is back to the way it was pre-op.
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620923_tn?1393294254

  Hi and welcome to the Chiari forum.

There r issues that can arise post op...all surgery has risks and this is no different. I do not know ur DD's history as to how bad symptoms were pre op and how her DX was found.

But, many of us do have related conditions to Chiari and depending on what all was done during surgery can be affected and cause issues.

Such as if u have ehlers-danlos this can cause rejection of the dura patch if it is a material other then your own skin...plus we heal slower too.

Tethered cord is another one that if u r not aware b4 surgery, that can cause u to feel worse post op...it can take up to 6 months or it can happen in the first 6 weeks, one can begin to feel worse post op then b4.

Then there r surgical issues that can also occur, cerebral ptosis, ICP, a CSF leak....

The best thing to do when feeling worse, call the Dr and inform him asap.
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