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707040 tn?1473944794

We're back again...

Just to say hello to all again - i haven't posted in quite a while. I haven't read through any recent posts, but I will tomorrow.

My son is now 18, had his decompression in January 2010 - 17 mm herniation (duraplasty with patch, shrunk the tonsils) Symptoms were initially improved and I think I posted last around December 2010 after he had some symptoms return, they did a spinal tap and didn't have him lay down long enough. After several days of severe pain and vomitting, was admitted to hospital and ultimately they said he was having migraines. Gave him a Topamax cocktail, which seemed to work for awhile. Eventually didn't seem to need it and went off it.

He did well for the most part in 2011, in college, working etc... had symptoms off and on but it was always dismissed because the chiari was "fixed" per the neurosurgeon who also told our primary doc that it was "fixed".

So in about February 2012, symptoms again increased - headache intensity and frequency, started having visual disturbances ( which they ALWAYS attribute to migraines) balance problems. We were logging symptoms and kind of doing a watch and see - we were both frustrated because docs kept saying it's not chiari, that was fixed with surgery. He called me from work in late March to come and get him .... very intense pressure in back of head, off balance, slow speech, hard time finding words, stiff neck and pain in temples. He was ready to go to the ER. Took him to a major teaching college hospital which we've always considered one of the best in the area. I had to spell chiari- not uncommon, but not a good sign at a teaching hospital!

Ultimately had the neurology dept come down and do a consult, they briefly discussed doing a lumbar puncture. They were called out on an emergency and did not return. The regular ER dr did not feel an MRI was urgent, he has a history of migraines. Prescribed Topamax - again - and sent home.

I again started searching for a new chiari neuro as our last one, once surgery was done, essentially wiped his hands of us, more on that later.
Found another specialist and I feel this doctor is the right one, FINALLY!

At any rate, he said this essentially a failed chiari surgery - although I think we knew it in our hearts anyway - not the answer we wanted, but at least we have one. I plan to personally mail this information to EACH DOCTOR that dismissed this is as not chiari related.

This doctor outlined several reasons why chiari surgery fails, which he felt were applicable to us, and why. So, my son, starting tomorrow, will be wearing a cervical collar 24/7 for a week, cannot lift (which is his passion) and has a full MRI scheduled in May, followed by dr. appt. We will know more then, but seems to think there may be scar tissue build up which is causing the symptoms. The cervical collar is to see if it helps in the event of any cranial cervical instability.  

So, I'm back again (and feeling guilty for not staying in touch!).  If you got this far, thanks for reading through it. Just intended to say hello tonight, and ended up with the whole story....
Sherimom
8 Responses
1925822 tn?1333705617
Hey thanks for the update.if i am reading this post i am kind of a bit depressed.my symptoms never really went away and the pain lately is getting more intense to and at some point i also feel surgery was a failure or at least the doctors dont really look into what else could be going on...great u found a specialist.keep us posted.
Avatar universal
Im sorry for your son's woes.  One of my future questions to myNS is about instability.  I've been wearing the Philadelphia (hard) cervical collar, which helps a lot.  But it's hot and can't be worn driving.  Are we supposed to wear this the rest of our lives?
I hope he gets some relief.
620923 tn?1452915648
COMMUNITY LEADER

  Welcome Back...sorry u had to come back under these circumstances.,..but so happy u have the right Dr for ur DS now.

Ne Dr that claims u r fixed post op is off his rocker....sorry...but u can not fix or cure a congenital malformation, only create more room to allow CSF flow and  slow progress.

May I ask, what u were told that u know that the surgery failed...was it surgical?....cerebral ptosis?....

   We have so many that do experience a failed surgery, and ne thing u can offer may help them as well.
707040 tn?1473944794
Well, the neuro that said it was fixed was the same that did the operation, Dr. Heffez at the Chiari Center in Milwaukee.  I think he is a capable surgeon who is knowledgeable about chiari.  However, the aftercare was less than wonderful....he told our primary doctor, who I really like, that it was fixed as well. Of course he will rely on the specialists opinion rather than mine and I even understand that. But Dr. Heffez really did not want to hear that there were problems post surgery, in my opinion even 7 or 8 months later.

We are now seeing Dr. Iskandar at University of WI in Madison, WI.
He said that this is a failed chiari surgery HOWEVER, the surgeries fail for many different reasons. Some possibilities include:
  1. the intial symptoms were not actually related to chiari so the surgery would not resolve the issues (my son did experience relief from symptoms post surgery so this is ruled out)
  2. the initial surgery did not removce enough bone to decompress it enough ( he said it appears, based on MRI post surgery that enough was removed, however another MRI is scheduled for May, so he will be checking again)
3. there could be cranial cervical instability following surgery (this is why he is prescribing the neck brace, to see if it helps symptoms improve or not - I don't know what happens if this is the issue, haven't gotten that far yet)
4. increased CSF pressure (he stated he does not think this is the issue due to my son's symptoms, but can't completely rule it out yet)
5. scar tissue has developed following the surgery (it seemed to me this was what he felt was most likely based on symptoms and that my son did have the tonsils shrunk during surgery) He said that having the tonsils shrunk during the surgery is a controversial topic for surgeons and that there are studies showing an increased risk of scar tissue growth when the tonsils are shrunk, he generally does not do this when he operates. He reported seeing several cases of this and that it DOES NOT SHOW UP ON MRI OR CT as being scar tissue. I asked later about this and it will show something, they just can't be certain if it scar tissue or something else without going back in to see and if so, clean it up.

I believe that he was basically saying it was a failed surgery because symtoms returned, some are worse than before.  It seemed like it had more to do with the same or similar symptoms returning and that because of this it is considered a failed surgery.

Hope this helps - I know there are a lot more reasons that it may be considered failed, but these were the ones he reviewed with us. Although we didn't want this, at the same time there is some relief in knowing what it is, that our instincts weren't wrong, that we aren't crazy or hypochondriacs!
My son is not one to complain - so when he finally felt ready to go to the ER I knew it was serious.  He never misses work or his workouts if he can hhelp it. But at least he's on a better path than not knowing. He has said to me many times how thankful he is that I listen and believe him, and push for answers.  
Well, hope this helps ......take care everyone!
Sherimom
707040 tn?1473944794
How long have you been wearing it? Did you have surgery and a return of symptoms, or is it to see if helps before having surgery? They are having him do it for a week 24/7 to see if it helps any.....we'll have to wait and see I guess...
Thanks
707040 tn?1473944794
It took some pushing to get to this point.....a lot of the time I felt like they were looking at me and my son as hypochondriacs. Like, we "fixed" it, this must be something else. It's been crazymaking and although not what we wanted, at least we KNOW now.....well, we know something, not exactly sure where this will lead. But it was good to have someone validate what we felt was happening. Not sure exactly why it's a problem at this point (see my response to Selma) but maybe now they can figure it out.
Where do you live? We are in WI.  
620923 tn?1452915648
COMMUNITY LEADER

  Wow...sooo much helpful info thanks.

Well I do know if it is cervio cranial instability that do a fusion...a friend of mine just had this done for it...many with Ehlers-danlos can have this issue worsen post op following a PFD.

I know many  Drs r talking the about what to do with the tonsils, mine said to cauterize is one of the things they had to do....and that it was better then removal of the tonsils which sometimes is inevitable...I guess it really depends on the situation when they get inside....sometimes leaving the tonsils intact is possible, sometimes it is not,.

And the Dr not wanting to help with there is an issue is an issue....that is just not right, and u will know more once u hear from the tests results.

  Was ur son Dx with EDS or was it ruled out?
722535 tn?1335232325
Thanks for your input it is very helpful, im writing alot down about this so when i go may 9th i can hopefully get some answers, i too am just tired of feeling like the docs are thinking im a hypochondriac its very hard to deal with and really does not help my depression. Being told by doctors that im healed because of the surgery just frustrates me because i know whats going on with my body thats not normal.  I feel like everyone is pushing me towards the psychiatry side of all this when theres more going on physically that they just dont seem to get, and it is making me more depressed yes but i dont want to keep the struggle with depression, but find an answer for this pain and all the other problems i have been having that i know has to be coming from post op chiari surgery. I also have to spell out what i have to every doctor what i have, just last fri i went into er with burning and bad pain and instabilty and couldnt hardly talk only to be told i was having an anxiety attack, my heart rate was extremely high and pain was horrible, so they doped me up with pain meds only to make me feel like a junkie, it relieved some, then the next day SAT was even worse than before back to the er i went thinking the meds they prescribed was having a reaction to (topamax).....so they did all kinds of test and CT scans and ddint know what it was then asked me am i on pain meds like i was an addict, i said i was i n here yest and they gave me something, they didnt even remember me coming in the night before. Its really hard but im trying to stay strong and find out what is going on......now im just going to take my neurotin and hang in there until i go back to the NS and hopefully one day can find an answer......stilll strugggling.......thanks for you post
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