Hi I know u all may not be aware that I had a friend pass away recently, but what u none of u know is that the friend had chiari...and died from complications....she had 10 surgeries in 9 weeks time, 2 of which were done in her hospital room as there was no time to get her to the OR.....
She had developed IH post op and also had a rare blood disorder that played into her having post op set backs.
This is the reason for my post....one of our members posted about her NL visit that turned into a NS visit that did not go well, but what came out of it was why did she not have more testing b4 surgery?
Too many times these set backs are a result of the patient not knowing they had a condition b4 they had surgery which plays into how they r able to recover....
This is y I am always saying even tho u have a dx of chiari and a Dr says u need surgery does not mean u should not look to see what else may be going on as it can affect how u feel and how u heal post op.
Garion's mom posted on this group how no one dr suggested sleep apnea may be an issue for her DS, and at age 9, he died from that condition ...but had he been tested he would still be here.
Some Drs do not check patients for EDS, and go forward with surgery and use a dura patch of their choice, but if that one patient in 10 has EDS they can have a rejection of the patch develop IH and have subsequent set backs and possibly more surgeries that had they checked may have been avoided using the patients pericardium.
There are times when all the testing will not help indicate how one may be affected by the surgery, but if we can help cut back possible set backs and issues why are these Drs not doing it?
This is not to say my friend did not have all the tests needed, but more a way to stress how important it is to get this testing done....this is major surgery, and there are no guarantees as to how we will handle it all...we are all different...but, make sure all the bases are checked...and u know that ur Dr is looking out for ur best interests.
Please do not choose surgery as a way to get ur life back to normal ....chiari is life altering, some are blessed to be able to go back to normal activities post op....take ur time to find the right Dr that is taking his time to look at all of u, not just ur chiari....this is not something to rush into.
I did not want to post too much about this friend out of respect for her and her families wishes...but, I will add that her family also does not want her death to keep those from having this surgery and getting help, as it was the rare other issues going on that added to her death.
Selma I again am so sorry for the loss of your friend and for her family. Your concerns about testing and the right NS are ones that all must take seriously. Thank you for always being a voice of reason.
Thanks for this post! There is nothing more important than that...i wish i would have joined the forum before surgery!!! And anyone reading that please notice that this is sooo important.u do need to find a specialist! So sorry to hear what happened.
I am so saddened by this, because this sounds so similar to what I am currently experiencing. Feeling pressured into to surgery without any other testing than a basic MRI.
I am so grateful for this forum, because had I not come here, and read and asked questions, I wouldnt now be seeing a dr., who is giving his second opinion and doing the testing needed prior to this major surgery.
Alot of times, I think a surgeon sees "something broke" so they want to "fix it". Not thinking there is so much more to this. I am deeply sorry for this loss. And I pray for others out there, because it is scary and its sad some Dr.s just arent more informing.
The biggest problem is we look to our NS as our Chiari Dr...when in fact he is a NS that knows chiari we also have to be prepared with a NL that also understands all of this or a PCP that is willing to learn...
This is all too important and we can not let what some say that sounds good influence us over what is true and right for us.
Keep in mind, if a NS is not doing surgery, he is not getting paid so all that u meet that r not true chiari specialists have one thing in mind when they offer to do it....that they will be getting paid, and they can not help u post op when u have a problem....
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