How many surgeries........

[LisaRiu]

Hi everyone,
I just wondered how many of you have had surgery for cm and how you feel now? From reading the posts, it seems to me that many of you have had multiple surgeries and are still suffering. I know that surgery is not a 'fix', just maintenance, but why are so many surgeries necessary? I have not had surgery and don't really know whether i want to put myself through major surgery time and time again. Although, I am still on the 'chiari runaround' so i'm sure i'll have plenty of time to reconsider surgery when they get around to actually listening to me, not brushing me off. I also think they still have a lot to learn about cm & related conditions too.....before they get delving into my head!
I am really interested to hear your experiences.....from real people who know how this condition affects their lives, not just what the books tell us, because the books don't tell us what we really want to know.
thanks for reading

[LisaRiu]

Thanks for the responses. I'm hoping that eds will either be confirmed or ruled out when I see the RH, then I'll have a better idea of what to expect.....hopefully.

[RheaAnn]

2. The second was because I needed the hardware (mesh titanium plate and screws removed). I feel so much better than before surgery! I just started acupuncture to help with pain and I cannot believe the results I am already having! Amazing!

I've had bumps along the road, but you were right, Chiari is something you have to deal with and maintain- surgery or no surgery. Finding the treatment that is right for you is the key!

[irislita]

mmmhhhh...just from my experience which dont have to be yours.i ve seen so many nl and ns and i just want u to know...if the next time u ll not be happy contact them.anyhow it wont cost u anything and u ll have to wait for an appointment, but i would def. do so!!!!! maybe u have eds too which can cause those things...anyhow as i told u before contact me whenever u want and good luck

[LisaRiu]

I have not contacted valle de hebron because I don't really know where to start. I am hoping to see my nl soon (don't think she is chiari specialist) and was going to wait and see what she thinks as i haven't seen her for 18 months. I'm also waiting to see another rh soon too following a referral to a rehab doc. He said the pain in all my joints is not caused by cm or syrinx and referred me to see rh about it. So i'm hoping that someone will get to the bottom of it soon.
I will look into valle de hebron, but I think i'll wait until i've seen nl first.
Hope you are well

[soccero]

ive had 17 surgeries but the reason for that is mainly do to my first ns and his inexperience with chiari i did not realize how crucial it was to go to a specialist! so please please please see a specialist!!!! best of luck!!!
molly

[irislita]

did u try to contact valle de hebron? what did ur medico say about referal?

[selmaS]

  Hi Lisa,

I am sorry u r still getting the run around...but it is very important to have a Dr that is well informed and experienced with Chiari and related conditions....those of us that still r dealing with pain and issues may b due to related conditions, this is y it is so important to get all of the related issues ruled out b4 u consider surgery as they can affect how u feel and heal post op.

  I had surgery and I consider it a success....I do have issues, but I also have related conditions...

  Are u able to get to a true Chiari specialist? We do have a member in Spain that had surgery....she may be able to help u too.....

Keep in mind Drs that say they can cure u, r the ones u need to run from....and if they do not check u for related conditions u should also leave....it makes a big difference especially those with EDS how they close u, and what type of patch used for the dura plasty....

Do not look for a time line as to when u can go back to work, as we r all different there is no way to know how u and ur body will respond to surgery until after.

  U may want to talk to Iris as she is the member in Spain...