Upcoming surgery

[RachelChiari]

Hi! I just joined this forum and I have to say I am a lot more nervous than I was yesterday reading about peoples problems. I will say that I know two people who had the decompression surgery done and 3-4 weeks later they were feeling great and going out with their friends. I am trying to remain positive knowing that and not focus on so many of the unsuccessful stories on here. I am nervous because everything has happened so fast. I went for an MRI last week, had the doctor call me back immediately to let me know that I had Chiari malformation with a 2.5 cm herniation. Reading this I am getting freaked out seeing that most others are much, much smaller. My neurologist told me I would definitely need surgery and referred me to surgeon at Penn. I went to him and he said mine is pretty severe, plus I have symptoms ( I get really bad rushes of pain to my head when I laugh or cough, as well as long history of headaches ); therefore, he also agreed that I definitely need the surgery. He said he performs this procedure about 50 times per year and hasn't had to place a shunt in someone for over 4 years due to his success rate, so I didn't think I really needed a second opinion. Does anyone think that I should still get another opinion or just stick with this doctor? My surgery is scheduled for September 10th, which is very fast from when I found out. My parents are also getting married October 18th and I am the maid of honor. My surgeon said he thinks l'll be fine in time for the wedding but I'm nervous chancing it. I need some opinions on whether or not that is enough time to recover! Please help! Thank you !

[Emme80]

I am  little late on this one, but just curious what you decided to do...if you went through with the Sept. 10th date and how you're feeling. I know that you said your parents wedding date is Oct. 18th. Which, while yes, seems like a good chunk of recovery time, this surgery is so vastly different when it comes to individual recovery time. If you kept the date of Surgery, how you feel w/the upcoming wedding & being a bridesmaid?  I know how important it is to feel like you're in the right NS hands. I myself needed to feel like I had a kind of relationship w/my NS...he told me (this is after "interviewing" 2 other NS's/ "2nd opinions"...all of which came back w/surgery warranted based on such overcrowding, herniation of only 5.5mm, but a very thick overcrowding, obstruction of CSF and the severity of my symptoms-which at that point were stopping life as I knew it. Literally stopping my life day to day. The NS I chose was indeed Chiari versed &  experienced...)and he was the one my gut initially felt confident with...and then after seeing others, I knew my gut was right) to come back to him whenever I had more questions&that I did! I went back at least 4x's before the surgery-even the week before, I had questions-that if he couldn't answer, I knew he was not Chiari'd enough for me. But, he answered and even seemed engaged in the idea that I had MORE questions for him...even questions that I knew there was no real actual answer, he did not fill with an "answer" just to make me feel secure (Trick questions perhaps? Yea, kinda.;) ), but that in of itself told me he was true. I just cannot express just how important is is to feel not just comfortable w/your surgeon, but confident. By the time of surgery, I did not second guess HIM....it was not part of my worry. My worry was then just my body, how my body will react, respond, recover, etc.
I do hope you're doing well! Especially w/ a wedding around the corner at this point. I admire you as I'm just shy of 4weeks post-op and I dint know that I would've been able to be in a wedding....in a week or two, id probably be able to GO to a wedding, but my presence would be short lived at such a function. I still feel a little bombarded by noise, lights, motion at the grocery store! So, kiddos to you my friend! I hope all is running smoothly for you & that it continues as such for the upcoming wedding date! Please do update us & let us know how it is going for you & how it was being a bridesmaid just shortly after having had brain surgery!!! Again, kiddos to you!!!

[kwalker0004]

As selmaS has said surgery is to help restore the flow of CSF. Its not the length that causes the problems it is how thick the tonsils are. I have a small but fat herniation which has caused a lot of problems. Some one with a long but thin herniation may not have as many issues.

So do find a true chiari specialist and get a second opinion. As this is not a cure. Since our neck is made up of muscles and nerves its unlikely you will be able to completely enjoy your parents wedding with all the activities. I had to reschedule my surgery. For now its for the end of this year providing nothing else comes up. And role out any other related condition before surgery. As this will help the surgeon make a better decision on your surgery.

Best of luck to you.

[lasel22]

It is reassuring to hear two people you know felt pretty good 4 weeks after surgery.  It seems like everyone is different regarding recovery.  I will be having surgery in October and am very nervous too.  

If your parents wedding is very important to you and you want to definitely be able to attend and enjoy yourself, you may want to wait until after the wedding to have surgery.  But only you can make that decision, because your symptoms may be so intolerable that you may feel better having the surgery before the wedding.  It all depends what your symptoms are like now.  Complications may arise, though, and worse case scenario you may not be able to attend the wedding.

If you are contemplating a second opinion you could schedule surgery with you current surgeon after the wedding and get a second opinion in the meantime.

[selmaS]

  Hi and welcome to the Chiari forum.

I know this is very scary and we want to have the most experienced Dr you can find and a 2nd opinion is needed,JMHO

It is important that they look for other related conditions b4 surgery is considered.....have you had more testing outside of your MRI?

This is where the benefits are not as good...since the Dr does the procedure to make more room and they feel it will "fix" the problems you are having..and most with this want to be "fixxed".

I am not saying surgery is not beneficial it is, mine was...I would do it again with no hesitation....BUT you need to have a Dr that does only Chiari surgeries and knows about ALL the related conditions as they are what can cause set backs and post op issues if they are not known or compensated for.

The wedding may be too soon post op for you to really enjoy it or be able to spend the entire day there....I know I would not have been able to.That is barely a month post op......It can take up to 2 yrs for the nerves to heal and since we all heal at different rates no one can say how your body will respond....and doing too much too soon can cause more issues...we need to allow our body what ever time it takes to recover and do so slowly and not rush to get back to "normal" what ever that is. I am not trying to discourage you...but be honest with you.