Seems like a simple question

I am new to this so be patient. I have been diagnosed with CM I. I was told today about the surgery and I have to make the decision to go through with it. My simple question is... Is it worth it??? I was advised not to read blogs, articles, etc.. and now of course I am so I am getting scared reading some of the horror stories. I need honest answers from people who have gone through it. I just want to know if there is any relief from having the surgery. I understand that there will be pain, thats expected but does the majority of the people who have had this suregery regret doing it???? I have a 3 year old and a fulltime job. I cannot let this take over my life but now I am very scared of the one thing that may make all of my problems go away.

[pamk5]

Hello and welcome!  I am sorry you are going thru this.  What symptoms are you having and what lead to your diagnosis?  I believe the best outcomes are with people who dont have alot of long standing neurologic deficits.  The biggest issues are with crowding and CSF blockage.  I havent had surgery yet but am facing it in a few weeks.  I made the decision to go ahead because I cant live with the symptoms and am afraid of progression. It is normal to be afraid. If you werent afraid I would be concerned.  We are talking about brain surgery after all.  Surgery is not meant as a cure but rather a means to stop progression.  Is your doc a chiari specialist?  I personally would not let anyone else do the surgery due to risk of complications.  There is a difference between a NS who occasionally sees Chiari patients and a NS who devotes his practice to it.  I would also advise getting a 2nd opinion or even 3rd till you feel comfortable.  If your symptoms are managable and there is no blockage, no syrinx you may be able to be monitored.  That is why it is important to find a CM specialist so that you have all the info you need to make an informed decision.  I havent really heard of anyone regretting it so to speak.  There are times that it may not relieve all symptoms.  My understanding is the goal of surgery is create the best possible scenario for things to go back to where they are supposed to go and it could take 2 years to fully recover.  Nerves must regenerate, etc.  And to reestablish CSF flow.  

I hope this helps.  Some of the people who have had surgery will be sounding off soon.  I did want to welcome you and hope you find answers.  

Pam

[mattsmom30]

well it all started in Aug 2010.. not to long ago but everything seemed to happen very suddenly. To make a very long story short, I started having headaches in the back of my head with pins and needles feeling in my hands and arms, followed by nausea, tired, grumpy, etc.. I am sure you know the drill. First I was dx with IBS... yes I said IBS. So I changed my diet which was easy since I was not eating much from the nausea. after the next ER visit I was given a CT scan, nada, just a referral to see a neurologist who then said its migraines, after all I am a woman who works fulltime and has a child so that has to be it right, lol. after lots of complaining on my part and not settling for migraines my Primary ordered an MRI and now I am here.... The NS I am seeing is Dr. Stieg in NYC. He is one the best from what I am told. I saw 1 NS before him and he said just ignore the CM I, I just stumbled upon it and continue using antianxiety pills to help my head.

[mattsmom30]

And thank you very much for the warm welcome!!

[selmaS]

  Hi and welcome to the Chiari forum.

  As Pam noted in the above reply u need to look at how the chiari is affecting ur overall health, not just symptoms, but they play a role as well.

A NS just bcuz they r a good NS does not make a chiari specialists...and horror stories come from many that had surgery from NS's that do chiari surgery...offer to "fix" the patient and tell them they will no longer have the issues...that is not true.

There is no "fix" or cure, just a means to help with the progression.....and hopefully help avoid the formation of a syrinx.

Were u tested for all the items Pam mentioned?...the CSF obstruction...a syrinx, Ehlers-danlos, tethered cord.....?

Do see a true chiari specialist b4 u make ur decision...and u will know when u have  or who the right dr is 4 u.Being in  NY u do have the Chiari Institute up there for an opinion.

Make sure the dr is checking u for all these other issues b4 u have surgery.

We r happy to have u join us, but not happy for the reasons that brought u.

   "selma"

[mattsmom30]

The NS gave me the rx for an MRI of the spine to r/o Syrinx and etc...i go Friday. So if I just leave it alone and pretend it does not exist and continue with meds for migraines, which are not helping and deal with what I am going through its pretty safe to say that things will only get worse down the road? I said to myself that I will do whatever is necessary to get rid of this but now that it is here I am like woah... alot to absorb. Thanks for writing, I will take any feedback I can get

[selmaS]

  What area of the spine?..is it the entire spine or just the cervical spine?...Many drs will only check the cervical spine , but syrinx's have been found in the thoracic and lumbar spines...so it can not rule them out, just not found in that area scanned.

I remember feeling the same as u....hang in there, it will be a crazy bumpy ride : )

  "selma"

[mattsmom30]

the rx said MRI C Spine R/O Syrinx. I am beyond exhausted from being told a million things, this particular NS is the first to knew what he was talking about, listened to me, and actually has some sort of an answer instead of "up the milligrams".  I waited 2mths to see this particular NS. The other one I saw was rude, did not listen to my story, just assumed everything and I was out of that office in less than 20min. I will call them tomorrow and ask what exactly I am getting an MRI of.  I am getting used to the bumpy ride, I just want to know that there is an exit coming up if you know what I mean. Heck I would even settle for a nice rest stop, lol.

[selmaS]

  I do know what U mean and I am so sorry u r having to go thru this, I am only sharing with u so u know and do not go with the first dr that knew more than the last one...that seems like a good thing now, but if u were with a true chiari specialist u would see a huge difference...not just the fact the dr knew about chiari.....they get all the testing.....and want to see that u have been evaluated completely to rule out possible conditions with similar symptoms or related conditions that could complicate surgery.

  Take ur own rest stop...and make sure u  have the right dr, b4 going forward, unless u r in danger health wise, u can slow this process of surgery down : )

  "selma"

[ssbaldwin80]

Hi,
I just wanted to throw in my two cents, if thats okay.
I had my surgery about 10 years ago, and honestly, it was probably the best thing that happened to me. At the time, it was miserable and painful, but now that I'm on the other side, it was worth it. Yes, occasionally I sit have headaches or neck pain, but my other symptoms were much worse. See, I was starting to have paraylsis on the left side of my body. It got to the point where I would drag my leg when I would walk. But I dont do that anymore.. If I hadnt had the surgery, I dont know what I would be like today. So I say, go for it. In ten years, you'll be glad you did.

-Sabrie

[selmaS]

  Hi and welcome to the Chiari forum.

Thanks for sharing ur experience with the PFD surgery...we do not have many on the forum with that much time post op behind them...I am almost at the 2 yr point myself and am very happy I had surgery...we all have diff symptoms and issues connected to our chiari.....and not all  warrant surgery and may be able to be monitored...and too many rush into surgery with the wrong drs...so we like to educate on  learning all u can if ur health is not an immediate concern.....

I hope u choose to continue to post here and share more about ur chiari experience.

  "selma"

[mattsmom30]

I am so thankful for all of the information everyone is sharing with me. I submitted all of my information to the Chiari Institute today and they said that I should hear Monday if I am a candidate to go there?? Not sure what that means but I hope they can see me. Can anyone tell me where they went? Did you travel to a specific center? The only 2 I heard of was the Chiari Institute in NY and the Mayo Clinic.....

[selmaS]

  I had my surgery at TCI in NY...so I really think u will be happy...let me know which dr u r assigned to...I had Dr Salvatore Insinga and felt he was just great!!

Good Luck with TCI and do post when u hear

  "selma"

[ssbaldwin80]

I had my surgery at Vanderbilt in TN. Back when I had my surgery, I was only 12, so I wasnt really involved in picking out where I had mine done at. I never even knew there was a Chiari Institute until a few years ago.. never been though.

-Sabrie