should i or shouldn't i

[sissy114]

I would really like to hear from anyone who has had chiari surgery. i have been to 2 NS, one said he wouldn't do it
if he were me. the other said he thinks he could perform it sucessfully. i really wwould like some input on this. i know a lot of the answers, but i would like to know if most people do okay after or would they not do it again ?

    

                                                                                                      Thanks
                                                                                                      sissy114

[razzle5150]

glad your appt went well , but dont let it go to long . best wishes

[selmaS]

I am so glad to hear ur appointment went well....and the fact u can speak to a patient that just had surgery with him is great!! Once u have the right dr everything falls into place.
As soon as I can get my Cine I think things will move along better. I too am going to have a dr that I was able to get to know patients he operated on. I also met him already...so it does help.
I have good days, and then those days I just don't know where to turn.And if I still have the pressure of having to work, I think I would have turned to drastic measures by now.

U will know when u r ready.
Take care
Godspeed
"selma"

[sissy114]

My appt. with Dr. Hampf went very well. He said that surgery was still up to me, but  the
symptoms would probably get worse. My husband and I felt much more confident with him, than we had with the other two NS that I have seen. It has been the hardest decision that I have had to make because some days I do well and think I can handle this,than I have really bad days and I don't think I can live this way. I have been going through this for 16 or more years. I have called to set up the surgery, just waiting to hear
back from them. Lovemygirls has done so wonderful and that makes me feel better about having Dr. Hampf do my surgery. I will let everyone know when this is all set up
and please keep me posted on what's happening with you.         sissy

[selmaS]

I was told I can have the CINE MRI down here to keep it under my insurance, I am waiting for the drs to schedule it.The dr in NY want this test done prior to my visit.....I do not understand what takes so long to schedule this......getting very frustrated.

"selma"

PS- how was ur appointment???....Oct 20th???

[sissy114]

Haven't heard if you went to chiari institute in NY. If so, How did it go?

                                                                                   sissy

[selmaS]

yes...my daughter lives in Manhatten, so I can stay with her......it's worth it to get answers and results!

Thanks and good luck to u!!

"selma"

[sissy114]

So, you r going to the chiari inst. in NY?  I think that's great. I considered that but it's too
far from Tn. My sister lives in Ct. and said she would take me, still too far for follow up, etc. If and when you have surgery, keep us posted.        Good Luck!!!!!!!!!!!!!!!
                                                                                                                                                                                                                                                                                                                                                                                                  sissy114                                                                                                  

[selmaS]

....that's great!!! good luck w/the new NS!!!
Keep me posted........I am filling out the forms....many many forms...for the NS in NY!!
...and still waiting on results for my endo on an US for my thyroid......oh well.....sometimes I fell like a marionette!!! and the drs are controlling the strings!

Godspeed
"selma"

[sissy114]

I am going for a 3rd opinion. I have an appt. with Dr. Carl Hampf Oct.20th. I hope that he can help me decide. I think if he can help without surgery, thats what i'll do. I want surgery to be my last resort. If i decide to have it, I will let you know. Dr. Hampf , i hear is
a chiari specialist in Nashville. How are you doing?




                                                                               Thanks!!

[selmaS]

You haven't posted if u made a decesion on surgery or not....did u check out more info for chiari? www.asap.org    or check the chiari institute's web site........if u do not have a NS that is a specialist on chiari u need to find one!!

Good luck
keep us posted
Godspeed
"selma"

[booluvschoco]

Hi my name is Caroline,I dont have the chiari malformation ,but my husband does,he is now 50 and found out when he was 36 years old,he did have the surgery,two surgerys at that, first one was of the brain and a shunt put in the neck at the age of 36,at the age of 37 he became sick again and had his second surgery of the back,where they removed a part of the spine and added a second shunt,he really didnt have any choice about surgery because he was having water on the brain and had to have it done at age 36,its been almost 15 years and he has lived in nothing but pain,he has a full complete spinal cord syrinx and now cant lift his left arm at all and is not able to walk because he also now has scoliosis of the lower back,I do know people have had nothing but good come out of this,but he has never gotten better and is now getting ready for his third surgery in Nov,Doc is not sure as of now which shunt shut down ,if not both causing his arm to not work,he has also lost complete muscle  in left arm and shoulder,gone,his has not been good,but believe me,Ive seen it much better for most people,it has just not been good for him,I worry about him everyday and really dont know what to do,he cant walk or use his left arm and just lays in bed or on the couch 24/7 ,I know this sounds terrible,but this has been my last 15 years,been so hard on all of us,Caroline,,,p.s  please get a good chiari malformation doctor,nothing else will do ok,and after surgery if you go that way,,exercise,and never give up,most ..most...get through just fine:)