Chiari surgery 2x?

Ok so I have been reading all these posts talking about if you have the decompression, and maybe get relief from some of your symptoms, then if you suffer a trauma, your symptoms come back ( I know the surgery doesn't always work) and also, if your symptoms do come back even with no trauma,  why couldn't you get the surgery again? I mean, i get that you can only take out so much of your skull, but Iwas even wondering last night, when they patch it, your brain is still pushing up against the patch, so could that be the cause for the symptoms not completely going away? And if you do suffer a trauma, why couldn't you do the surgery again a do maybe a "bigger" patch? Maybe the surgery isn't that successful because the patch isn't flexible enough? But you really wouldn''t want it to be right? Because then your brain would just - be out there-. And after the surgery since they do cut out that  part of skull, can you push on the back of your head and is it soft? What if you pushed in with your finger or someone hit you right there- would you damage your brain? Would it kill you? Give you major brain damage?

Sorry for not making much sense, it's been one of those days. I know I have a vocabulary but I lost it LOL - I was talking to my sister about watering the lawn and how since we are going to till it up there is no sense in watering it, and I said "It's a waste of water- our oceans are beginning to get gone" - she laughed - she said - "your Chiari getting to you today?" I said "well you know what I meant though didn't you" I meant to say (and I couldn't find the word till just now) "our oceans are being depleted" - Far cry from what I actually said LOL

[selmaS]

HI...not sure with my chiari brain today if I understood what u were asking,. but I think u wanted to know  if after having PFD and still having symptoms or a return after an injury would a 2nd surgery help?

There r  ad have been chiarians that had a failed PFD and had a 2nd surgery..my roommate while  in the hospital after mine was in for a redo...a diff dr, but a 2nd surgery....

Yes there r redo's as a result of scar tissue, or a MVA causing/triggering a re herniation and CSF blockage.

Sometimes, it is a separate issue like TC (tethered cord) that is still pulling everything down and with that taken care of the herniation retracts.

The drs can not remove too much as it can allow the brain to slump.....and a larger patch is not going to give more room....

Not sure if I am making sense either...so I will leave it with this...and mayb u can redirect the question if I missed the mark : )

"selma"

[denverluv]

Sorry! My thoughts come in faster than I can keep up with and they get mixed up and I also can't find the words- and today is one of those days! :)

No- you understood me LOL- so you could have it again.

But what about the part of your head where your skull is out-is it soft? Can you damage your brain if you poked it? Or got hit?

[tharilyn]

A local fellow Chiarian (and friend now:D )  actually has this very problem!  Her neuro took out TOO MUCH bone ... there were more than a few mistakes in her surgery and she cannot have the back of her head touched. I tried to talk her thru getting logged into the Chiari community here tonight but couldn't (internet drama!)  ...hope she will join us soon :)

Denverluv, you are thinking exactly what I am thinking ... I had an MVA 4 months after my PFD and messed it up ... the doc didn't open the dura just did the laminectomy and bone removal ...sooooo why can't they RE-fix it?
Actually I think most doctors think, "you had surgery, you must be fixed!"  I'm hoping to get to Los Angeles where I'll have a better chance at a "Dr.Oro" type neuro than I do here in Southwestern Indiana  :)

[selmaS]

I guess it all depends on ur surgeon and the amount taken out and type of patch used....

I do not find a soft spot in touching the back of my head, but, I am sure it is a very small area and diff to locate unless u know exactly where it is.

I am sure if we got hit in the head, with or with out surgery and with or with out chiari, it would case an issue.

"selma"

[denverluv]

Tharilyn- OH- MY- GOSH! That would FREAK me out!  

Yea- why can't they re-fix it? I just don't understand why once has to be enough. Maybe risk? HMMMM....

Selma- your surgery went ok right? And you DON'T have a soft spot. Good to know- all of I sudden I was thinking I was just going to wear a helme for the rest of my life because the thought of someone poking me in the back of the head (for whatever reason ok? LOL) freaked me out!

[selmaS]

My surgery went well and no soft spot that I can detect...lol..thanks for caring.

There should be a way for Tharilyn to get this fixed....as I said it all depends on the dr...a true chiari dr will not tell u that u r cured...IMHO.....

Doing research on ur NS first can save u these type of worries and HA's

"selma"

[jvilletina2]

I understand your questions and thought process completely. I've had the same thoughts myself. I had a PFD 6/09. Although it was "successful" and many of my symptoms went away I've wondered and researched if more surgery can be done, especially as more symptoms are now returning.

I have no answers for you, but you are making sense (at least to us fellow Chiarians!)

I asked my daughter to get the dustpan and shovel (instead of broom) after I clumsily knocked a bowl full of decorative sand all over the dining room floor today. I was so mad with myself for the accident, then the wrong words, and then hurt from her making fun of me. (she's 11 and wasn't being mean - just laughing) It was me who took it the wrong way. Then I got to be mad at myself for that too!
Tina

[denverluv]

You know Selma, when I first came on here a while back, you were the one who told me to check out Dr. Oro. I had no idea about Chiari or SM. It was at that point I really started reading all the posts and finding out how if it is not a specialist you are dealing with it probably won't turn out good. I am very thankful that you told me that, because when I did finally see the NL he was saying I had to have surgery IMMEDIATLY - I checked the NS out- no info on him anywhere, his website said nothing- nothing- anywhere about Chiari. I went to Dr. Oro instead and he said - hold on- let's really look at what is going on and what we are dealing with.  

I just can't even imagine what I would be going through right now if I would have just jumped in with the other NS. I told him my history of having a shunt, a previous TC, how my scoliosis seemed like it was getting worse- it seemed like he was just ready to refer me for surgery without thinking about how it all could tie (no pun intended this time :)) together. I am so curious to see what Dr. Oro has to say. Another thing I am looking forward to is if my cord HAS tethered again, in doing reserach some people whos scoliosis was progressing got better after the TC surgery. Gosh -I can't even imagine what it would feel like to get all of this taken care of! I know it's not a cure, but the peace of mind- ANYWAY- gosh I am on a rambling roll tonight! Thank you Selma for that advice at the beginning of my journey- I know it probably saved me from alot of trouble.

[denverluv]

jvilletina-  My kids have just learned to finish my sentences  for me- makes it SOOO much easier- my kids are actually better about it than my mother- she gets all frustrated with me  and gets that tone of voice- she mimicks me in that tone of voice like-duhhh-   -- whatever.  ANd I have givin her info, I send her links, she doesn't look at them. And the ones she does look at, she says "you should show that to your husband" Um- mom- he is more understanding than you are- what are you talking about?

When it's really frustrating is when I'm talking to the teachers at school- it;s like I think they must think I am on something LOL- so I finally told them what was up. I didn't want to because I am not that type to be all - Oh, woest me, I have an ailment- sigh. LOL

[*Stormy*]

K so I'm trying to keep up with you guys lol...

I have my follow up MRI tomorrow morning...very nervous about it..but I am pretty sure that it will say that surgery has been successful.

I do not have a soft spot at the back of my head, nor should I!! If you look at a video or pictures of the procedure, the piece of bone that is removed is well under your skull..so you shouldn't be able to poke it (unless too much is taken of course).

As for further surgeries, I have heard of people that have more than one but that is usually due to some kind of complication...if you have a "successful" surgery (normal CSF flow is restored) then I don't know what else they can do?

Carolyn

[selmaS]

U r welcome, but u made the decision to listen and try someone else....not being a dr, I am sure there r those that feel there is no reason to listen to me....I am not an expert, but have done my research where it concerned me or my friends.

And all I can tell all of u is wait and be sure u r seeing a true chiari dr for ne chiari related issue.

Good luck with Dr Oro : )

"selma"

[northernstarmn]

ive also questions the 2nd and or sometimes 3rd decomprression.,.. I havent suffered from a MVA however i had decompression surgery complications which resulted in needing a shunt (first too much pressure) then after 6 weeks of in and out of the hospital i noticed "sinkage" at compressions site-skull (told from not enough fluid and my brain was coming away from skull)---- ANYWAY---- i wondered about that same issue if too much is removed cant they replace part of the skull with Oh I dunno a pig skull or something--or what ever they use for reconstruction surgery-

selma- you are speaking from experience as many of us are, so someone speaking from experience has more valueable information then from a doctor who has no clue! While you are not a doctor i personally value your information and position!!...And you are absolutely right ppl need to research their doctors before letting them get inside your head-too much faith is placed in some doctors hand and its time to take back the riens!!.

my mind works brillantly......... when it wants too--LOL--- take care all ~Lisa

[selmaS]

Thanks Lisa : )

I appreciate ur kind words.

"selma"

[denverluv]

Selma-Yes- Lisa answered they way I would have if I could speak correctly :)

Carolyn- please let us know what your MRI says - I am nosey :) - What a pain (literally) you had to go through all that. I really hope this time is the last time for you. :)

Ok- so they take out bone under your skull? i was confused-I thought they took out that back part of your skull and just put a patch on it! LOL LOL

[selmaS]

Thanks : )

[*Stormy*]

LOL not as bad as that thank goodness...but when I heard about the surgery that is exactly what I thought too. So did my family...they kept saying "are you going to have to try and not bang your head after?" I saw the look of fear in their eyes b/c I seem to bang my head into something every day of my life!!

[denverluv]

LOL- ok well here's my ignorance - I didn't even KNOW there was bone under your skull - I just thought it was your skull then brain! LOL LOL LOL-

[*Stormy*]

LOL...well I never really thought of it either...until I took my med term class and they go through all that...and then I was like wow! Your skull is made up of several pieces and the occipital is just one of them...the only opening back there is the foramen magnum where the spinal cord comes through to connect with the brain. When they do the surgery they cut away a piece of the bone at the foramen and actually make it bigger to make more room.

I think it's b/c on all those CSI like shows that we watch on TV...they always show the skulls w/o that piece of bone! LOL

Carolyn

[denverluv]

Ha- that's what we get for getting our knowledge  from t.v. shows!