To open the dura or not? That's the question

After knowing that I now need surgery, I have been reading a lot about the operation.

I know many of you have had the surgery. For those of you who had your dura opened - what was your experience like? Did you need more surgery? Do you regret it? For those of you who did not have your dura opened - what was your experience like? Did you need more surgery? Do you regret it?

I'm leaning toward NOT having my dura opened....but without knowing anyone personally to talk to it's been a lot of reading up on stuff online. I just wanted to see what answers you all could provide.

THANKS FOR YOUR HELP!

hi there.

im unsure wether i have my dura opened or not, i did have a duraplasty taken from my neck and put over the brain after the bone was removed so my brain wouldnt drop any more,

i had no choice but to have surgery, i had no fluid running in the back of my brain, so it became dangerous,

my surgeon always refused surgery, so im still stunned that it got done,

i had surgery on the 22june, i didnt have a headache at all, i get mild ones now,

a good surgeon shouldnt need to open it, unless there are bigger issue when they open you up,

there are alot of different ways surgeons do it, so the best way is to talk to your surgeon, and what hes opinion is, and then go from there,

areyou booked in for decompression?

joelene

A (very) few neurosurgeons nationwide leave the dura open at the end of CMI surgery. This is the way the dura is left at the end of surgeries for tumor removal in the posterior fossa. This solution was suggested a long time ago by Dr Williams, one of the pioneers of CMI/SM, in the face of the frustrating recurrence of CSF leaks following standard Duraplasties. Leaving the dura open, creates an intentional doctor-induced CSF leak, with the consequent formation of a Pseudomeningocele (a collection of CSF outside the limits of the dura, beneath the skin and the muscles). What is the rationale behind this choice? The advocates of this technique state that whenever a CSF leak occurs at the end of a standard duraplasty, the CSF has an easy way going out from the small holes through which it usually occurs, but has a tough time coming back in (= a valve mechanism). Leaving the dura open, the CSF can flow back and forth, like a tide. But, CSF does not belong there, and aseptic meningitis is the consequence (aseptic meningitis is an inflammatory reaction within the CSF). And if some CSF seeps through the skin suture line, bacteria swim inwards, and bacterial meningitis can occur; in this case, the defensive barrier of the dura is non-existent, and the infection can blaze within the posterior fossa without obstacles. Plus, CMI patients have raised CSF pressure, which causes larger Pseudomeningocele collections than normally expected. To top it all off, aseptic meningitis further increases the CSF pressure, increasing the size and tension of the Pseudomeningocele.


Hi Joelene!

Not yet. I will hopefully schedule it with the operating NS on Friday.

THANKS FOR THE INFO!!!!!! That helps me a lot.

Thanks also for the expanded information about making the decision. That's great food for thought!

THANKS!!!


joelene hossack said:

hi there.

im unsure wether i have my dura opened or not, i did have a duraplasty taken from my neck and put over the brain after the bone was removed so my brain wouldnt drop any more,

i had no choice but to have surgery, i had no fluid running in the back of my brain, so it became dangerous,

my surgeon always refused surgery, so im still stunned that it got done,

i had surgery on the 22june, i didnt have a headache at all, i get mild ones now,

a good surgeon shouldnt need to open it, unless there are bigger issue when they open you up,

there are alot of different ways surgeons do it, so the best way is to talk to your surgeon, and what hes opinion is, and then go from there,

areyou booked in for decompression?

joelene

sometimes you need options to make a desicion that is right for you,

you have to be proactive in yourself,

its a major desicion and good on you for looking into it, sometimes you dont have options and sometimes you do,

keep me posted on what your surgeon says

joelene,

I found out today that I do have to have my dura opened.I have no option, my condition is simply too crowded to avoid it. Thanks for your advice and helping me explore the non-opened option.

He also found a syrinx on my cervical neck MRI, it's smaller, but still troubling.

Thanks for all your advice and support! I'll keep you updated when I have a date!

I am being booked by my NS office for the decompression, and will have a date by next Friday.


joelene hossack said:

sometimes you need options to make a desicion that is right for you,

you have to be proactive in yourself,

its a major desicion and good on you for looking into it, sometimes you dont have options and sometimes you do,

keep me posted on what your surgeon says

joelene,

My dura was opened and i chose to cover it with a bovine patch. (I had the option of using a bovine patch or harvesting my own “skin” from my thigh.) I was told the chances of leak or infection from the bovine was less than 2% and the chances of leak or infection from using my own material was less than 1%, but it would be extremely painful. Well, I ended up with both a CSF leak and a terrible infection (bacterial meningitis.) So the NS did a second operation and removed the bovine and harvested “skin” from my thigh. Let me tell you, he was NOT joking when he said it would be painful!! It took about 2 months before I could walk without the use of a walker or a cane. But if I had to do it all over again, I would probably go with the bovine again…

Thanks for your advice, Stacy! The NS suggested I have an artificial dura installed as opposed to those routes. It will last longer, and has less than 1% chance of infection as well.

I can only imagine the pain you went through!

I hope you're doing well now! You're in my prayers!

Stacy Marie Burton said:

My dura was opened and i chose to cover it with a bovine patch. (I had the option of using a bovine patch or harvesting my own "skin" from my thigh.) I was told the chances of leak or infection from the bovine was less than 2% and the chances of leak or infection from using my own material was less than 1%, but it would be extremely painful. Well, I ended up with both a CSF leak and a terrible infection (bacterial meningitis.) So the NS did a second operation and removed the bovine and harvested "skin" from my thigh. Let me tell you, he was NOT joking when he said it would be painful!! It took about 2 months before I could walk without the use of a walker or a cane. But if I had to do it all over again, I would probably go with the bovine again...

Hi Katrina:

Sorry I haven't written sooner....family issues...anyway...

I did have my dura open and a synthetic patch was used..I have had no problems with that..not right after surgery or since...a little over 3 yrs ago.

It was explained to me that the dura should be opened in order to 'make more room'....my NS , in my opinion is very good and I went with what he thought best..however, I did go to Boston to get a 2nd opinion and the NS in Boston said the exact same thing.

Best of Luck to you and Peace Always be with You,

Lori

hi katrina

im glad that atleast you know what you will be dealing with, thats always possitive,

and im sure you wont have problems, and if you do, you will be able to deal with it,

you sound like a strong women and meet problems head on,

joelene

i had mine opened also with a bovine patch no problems with that- had it done 2 yrs ago in Oct.

Dear Joelene, my daughter just had her second decompression surgery. In the first surgery they left the dura closed. Her doctor just went in removed the outer layer and sewed her back up - quick and simple - it took her 45 minutes in surgery and she was actually released the next day because she was running up and down the hall. By the same time a month later she was off thickener, and playing outside (something she couldn't do before because the sun cause migranes that were uncontrollable.) A month after that we were back at the NS because she had started to regress!

The way it was explained to me was that the scar tissue that had built up on top of the dura was constricting it more that the original skull part. She had her second decompression surgery to remove the scar tissue and the dura Oct. 18th. This time it was a lot harder. She was in surgery for 90 minutes, she had to stay sedated for 2 days afterwards because she had to stay on her belly for 48 hours post op - and being 19 months old sedation was the only possibility of getting that to happen.

She hasn't bounced back as well this time and we found the hard way that when she is sick --she is SICK! but she isn't choking near as much and God will when she gets over this bought of flu maybe we can get some sleep!

Would I do it again, yes - in my case I would of done it exactly the same. Not that I wanted my daughter to sit through 2 surgerys, but I have talked to mothers who were lucky enough to only have to sit through the one and there kids did awesome so the less we do (as long as it works!) the better - I think.

Good luck and God Bless!

I would say have the duraplasty.its more hospital stay and a little longer recovery time,but i chose not to have it for my daughter.she had surgery in november 2010.she had all the problems come back in may.they were checking for other things,in september 2011 she had another emergency decompression,this time with duraplasty.she was in hospital for 1 extra day,but now doing well(well as she can be expected,shes still healing and now has seizures that are non chiari related).i would talk to your NS and see what they think.good luck,I hope this helps, I would have done the duraplasty the first time,to keep her from going through it again:)

she had the synthetic patch, the 2nd decompression may have been due to a growth spurt.with any growth the brain and bones do not grow at the same rate, which could have caused her CSF fluid from flowing the second time.we are not sure the exact reason,but just a little more info for you to consider

Amanda,

Thanks for your insight! I can't imagine having two of these surgeries, it especially must be hard for you to see her go through that!

Your family is in my thoughts and prayers! I hope she does not need another surgery, and continues to have the normal CSF flow!

Katrina

Amanda Larkin Hollan said:

I would say have the duraplasty.its more hospital stay and a little longer recovery time,but i chose not to have it for my daughter.she had surgery in november 2010.she had all the problems come back in may.they were checking for other things,in september 2011 she had another emergency decompression,this time with duraplasty.she was in hospital for 1 extra day,but now doing well(well as she can be expected,shes still healing and now has seizures that are non chiari related).i would talk to your NS and see what they think.good luck,I hope this helps, I would have done the duraplasty the first time,to keep her from going through it again:)

she had the synthetic patch, the 2nd decompression may have been due to a growth spurt.with any growth the brain and bones do not grow at the same rate, which could have caused her CSF fluid from flowing the second time.we are not sure the exact reason,but just a little more info for you to consider

Lori,

I completely understand. I haven't been on because I am dealing with everything to prepare for my surgery. I am 22, and have lived on my own away from my family for almost 5 years. So much to get under control for the surgery date coming up on the 22nd. SO MUCH STRESS!!!!

That's pretty much what my NS said as well. I'm glad to hear that you have had a great experience with it! Makes me feel better!

Thanks for your advice! Prayers and peace,

Katrina

lori said:

Hi Katrina:

Sorry I haven't written sooner....family issues...anyway...

I did have my dura open and a synthetic patch was used..I have had no problems with that..not right after surgery or since...a little over 3 yrs ago.

It was explained to me that the dura should be opened in order to 'make more room'....my NS , in my opinion is very good and I went with what he thought best..however, I did go to Boston to get a 2nd opinion and the NS in Boston said the exact same thing.

Best of Luck to you and Peace Always be with You,

Lori

Katrina,

I had a duraplasty using a synthetic patch…I am now 7 1/2 weeks post…I am still healing, but do not regret having the surgery. I have not had one Chiari headache since, and the numbness and tingling have gone away also.

Thanks for your insight! That sounds fabulous! I wish you the best as your finish healing! How quick were you able to get around by yourself?

Sslakemom2 said:

Katrina,

I had a duraplasty using a synthetic patch.....I am now 7 1/2 weeks post....I am still healing, but do not regret having the surgery. I have not had one Chiari headache since, and the numbness and tingling have gone away also.

Thank you.yes its very hard watching her.It was horrible at the hospital, she was in pain and I couldnt do anything for her.Shes better now.she is 6 weeks post op.And now having other problems, hopefully not chiari related.She is hallucinating and having temporal lobe seizures,shes still seeing the NS,but will hopefully be released to a NL for them.She continues to amaze me everyday!She is fighting this Chiari and not letting it get her down.She still does have bad days, but Im seeing it with the weather changing and barometric pressure changes.Hope all goes well for you.We will be praying for you! Mandy



Katrina S. said:

Amanda,

Thanks for your insight! I can't imagine having two of these surgeries, it especially must be hard for you to see her go through that!

Your family is in my thoughts and prayers! I hope she does not need another surgery, and continues to have the normal CSF flow!

Katrina

Amanda Larkin Hollan said:

I would say have the duraplasty.its more hospital stay and a little longer recovery time,but i chose not to have it for my daughter.she had surgery in november 2010.she had all the problems come back in may.they were checking for other things,in september 2011 she had another emergency decompression,this time with duraplasty.she was in hospital for 1 extra day,but now doing well(well as she can be expected,shes still healing and now has seizures that are non chiari related).i would talk to your NS and see what they think.good luck,I hope this helps, I would have done the duraplasty the first time,to keep her from going through it again:)

she had the synthetic patch, the 2nd decompression may have been due to a growth spurt.with any growth the brain and bones do not grow at the same rate, which could have caused her CSF fluid from flowing the second time.we are not sure the exact reason,but just a little more info for you to consider

new member wanted insight in opening the dura

Thanks Beeba…yes, my NS always opens the dura