Husbands 20th Chiari Surgery this MONTH

[Kellyefoster]

Yes i said it, this will be his 20th. And his 16th in the last almost 3 years. We live in UT and Fly To NY for every surgery, Im just kind of lost at this point. I almost feel like its not going to end.
Has ANYONE out there had this many? Im just looking for answers :(
And yes, our doctors are some of the best. Its just how bad his condition is.

[*Stormy*]

Just wanted to add my two bits to say how sorry I am that your hubby is going into his 20th surgery!! Unbelievable!

I imagine both of you are some of the strongest people there are to weather through all of that. I have had the decompression surgery about 9 months ago and the fear of just having that one is something I will never forget. I shudder at the thought of having anymore. I was one of the lucky ones too, as I never had a shunt or any complications from surgery. Sometimes, I feel unlucky when I think about how I may never run again or after a day of pain but your post has made me see how strong people can be. I have great faith that one day these surgeries WILL stop, and I pray that is sooner than later.

Please do let us know how things go!
Carolyn

[n40066]

no kelly! you misunderstood!  i was able to resuscitate my son and he is still alive!!!!  i was just telling you what had happened with him to explain that i could relate with how you felt in that moment!  he struggles every day of his life, but he is still very much alive, kicking, screaming and causing mayhem in his wake wherever he goes!  lol!  thank God!!!!  i'm sorry if i didn't make that clear.

so glad you are comfortable here and looking forward to getting to know you better too!
elizabeth

[selmaS]

HI and welcome to the Chiari forum.

I have heard of some that have had close to the same number of surgeries as ur DH....most r those with shunts.....
The fact that is a shunt can get blocked, or just stop working is a main reason for the multitude of surgeries.

U both have been thru a lot....

Chiari it's self may not require the need for multiple surgeries unless one develop's another related condition as a result...like pusedo tumor cerebri...also known as inter-cranial hypertension....

All surgeries carry risks....there is no getting back to who we were...only ways to help slow progression, and hopefully relieve some of hte pain  and pressure we deal with.

I pray u find info and support that u seek here....we have a wonderful chiari family and r glad to have u join us, not happy about y u had to seek us out.

"selma"

[Kellyefoster]

Thank you everyone for your kind words!!! I am very happy i found this site, and everyone is so amazing and willing to answer questions! I hope i get to know each and everyone of you!!

N400, i just wanted to tell you how sorry i am about your loss of your baby. My baby is 4 and i just can not imagine loosing him. That just shows your strength and power, I know the hurt will never go away, but i hope you find peace anyway you can. Just from finding bryce on the couch and the way he looked I ended up having to see someone. And they told me i have PTSD. I check to see if hes breathing everytime i roll over at night, and last year it got to the point that i would set alarms to check my son, who is healthy as can be. And that took my life over.

I will write more when i have the chance! Again, thank you so much everyone.

[angelways]

god bless yoyur family,you have been through heck it sounds like..maybe you should find another dr,i have been doing research on the drs at howell allen clinic in nashville tennesee,and all i've found out about them have been excellent! i have a chiari 1,with tons of symptoms and hopefully dr. hampf there at the clinic will accept me.maybe you shold consider them too.if even for a second opinion.god bless you and your family,keep us posted.

[Jennyfoo]

Holy guacamole! I can't believe what you guys have Bern through. It's one of my worst nihtmares that I'll have complications after my surgery, requiring further surgeries. It's unbelievable that he's going on 20. Holy cow!

I can't imagine the expense too. Yikes!

Welcome to our chiari family. I'm sorry for the reason you found us. I hope this 20th surgery is more successful and hopefully his last.

Ttfn,
Jenn

Ps: what part of UT are you from? My Hubby and I met at BYU in Provo. We live in CA now though.

[n40066]

wow.....i don't know who's been through more.  you or your husband!  lol!  i've had one pfd on 11/23/09.  having some issues with my cervical spine right now, but as far as i know, the chiari part of me seems to be staying put where it's supposed to be!  i was fortunate in that i did not require a shunt.  there are, however a few people on here that do have them i believe.  we have a really great group of folks here.  i was very active prior to my surgery, then went awol for a bit afterwards.  but this site is like an addiction and it just draws you back in!  lol!  but it's a gooood addiction!  there are some very good folks here that have a wealth of knowledge and they don't mind sharing....and what they don't know, they don't mind helping you research!  it's a great place to come and unwind, cry, laugh, complain, vent, inquire....you name it.  i CAN tell you that no one else here has had 20 surgeries for their chiari, so your hubby takes first place on that one!  lol!  i don't know if i can answer any of your questions or not, but will sure give it the ole college try.  and if i can't, i'm sure someone else here probably can!
i'm really sorry you had to witness your husband dying, but really glad you were also witness to him being brought back!!!  that's a very hard thing.  i know that first hand, as my son died in my arms 2 yrs ago.  it's only by the grace of God that he is still with me now.  that was the worst day of my life and i can relate with you first hand on that experience.  i shudder at the memory.....

so, when are you heading to ny?  tci, i take it?  our group leader, selma, had her surgery done at tci, which i where i assume you are also going? she would be a great one to talk to if you have any questions about the drs or hospital there or where to stay!  her husband stayed in a great hospitality house there that was very reasonable!also, i'm sure you've probably already heard of it, but on the off chance you haven't, have you ever looked into angel flights?  they will fly you there and back for no cost...patient and whoever needs to go with him.

looking forward to getting to know you and having you as part of our family, kelly!  and be prepared!  with your/your husbands history, i'm sure you will be bombarded with questions come morning!!! so sleep well, new friend and come back to us well rested!  lol
elizabeth

[Kellyefoster]

Well alot of them are having to do with his shunts. He has 3 placed right now. One on the top of his head, one upper neck area and another just a bit lower on his neck. And even with 3 they Get clogged. So once hes out of surgery for about a month a shunt will clogg and we wake up to his head swollen with the spinal fluid. We have been to Michigan, All over UTAH, and NY for it.

We live in Utah, and we have to fly to NY now for every surgery. It gets hard. we have a 4 year old on top of it. Have i mentioned the cost even with insurance, oh and travel lol. Its like my full time job. What is even worse is he cant be the father he wants to be. I love my husband and wouldnt have it any other way if it were to change things, but its like i am taking care of two kids. He also died in front of me during his 9th surgery about a year and a half ago. My son found him blue on our couch. And that caught my eye. so i was able to call 911. And they were able to work on him. That was just from all the shock of the surgery. And since that he has had even more. So im really trying my hardest to find answers, or people with a story. Anything. We have never met a person face to face with a chiari. So im glad i found this group. I feel a lot better.
I will update my BIO tomorrow with everything that has happened. So people can get a better feel.

He has been through a lot. And so have I. So if i can answer questions for anyone, im more then willing. He has been on every medication out there, so if i can help let me know. Im looking to ask questions also. So thanks to everyone who is here. This is just awesome :)))

[n40066]

oh my GOD!!!!!!  no!!!!  i've never heard of anyone having that many surgerys!!!!  why has he had to have so many????

sorry...i'm in shock.  welcome to our family!  lol  wow....still in shock!
elizabeth