Debating Surgrery...

[Mazie1209]

HI! I am a 35yr old female, I was diagnosed with Chiari (1cm) probably back in 2002.  My only real symptoms were headaches at the back of my head, which are very easily controlled with Neurontin.  This past october during a routine yearly MRI, my neurologist decided to have them MRI my neck as well and they found a Syrinx.  I was immediately refered to a Neurosurgeon.  At the neurosurgeon, after several reflex tests and looking at my MRI he stated he really felt I had crossed the line between the surgery being optional, and NEEDED. He said my reflexes were TOO good (hyperfeflexic) so he believes I have some damage to my spinal cord already. I have read so much negative and horror stories on Chiari Decompression surgery, that I do not want it, yet at the same time, I have read how syrinxs get worse, and my neurosurgeon believes it will continue to damage my cord and I will detriorate..Has anyone had syrinx and chose not to get surgery, or had any experience in the Syrinx area?
Any advice and help is MUCH appreciated.
Thanks!
Mazie

[Mazie1209]

Yikes!! Now I really dont want surgery...

[selmaS]

  One died after surgery from heart failure as a result of the drs not listening to the patient for a long period of time....

The other was a young girl 20 yrs old, she did not have a chiari dr...and she developed a infection after surgery and was sent home, she called and was ignored and eventually she passed as a result of the infection....

There r many more...but I want u to be aware bcuz no one ever talks about the fact this does happen....and we all need to know surgery ne major surgery can end this way, but with the right dr it is less likely.

It is just like the little boy that had surgery and passed afterward...his drs never checked him for sleep apnena...

If u want more details on these stories I can PM them to u.....

[classiechic]

Great question!!! I am so afraid. I honestly thought after some of my own research that you couldn't die from this. :(. I see my NS for the first time Wednesday and can't wait.I have soooo many questions.

[Mazie1209]

Selma, can u further explain about those two women? Did they pass because they did NOT have surgery?
Or because they did? How were their situations mishandled??

Mazie

[classiechic]

How can you die from Chiari? That scares me. :(:( I would like to tell you all what my MRI states, could you if you can break it down for me. I don't know if I have syrinx or not. That means blockage of my spinal fluid right??? MRI states.....findings: Within the posterior fossa,there is approximately 8 mm inferior cerebellar tonsillar ectopia into the upper cervical canal consistent with Chiari Malformation. There is mild associated kinking of the cervicomedullary junction. Fourth ventricle configuration is normal. No other significant findings within the posterior fossa. ???? I get that I have Chiari, but that's about it. What does the "kinking" suggest? Thanks so much.

[selmaS]

  U r right about the CINE MRI, since a syrinx usually forms when u have a blockage...no need to see if u have a blockage if u have a syrinx.

  I have read too many obits of those that  were mis handled....and when u see that u know u r making the right choices......such as-Ashtyn who passed this passed Oct, and Kelly who was gone a yr this past Oct...all bcuz of chiari

Read some of our journals to see that we all have the same thoughts about surgery....u r not alone : )

and a crystal ball would have helped soooooooooo many of us : )

  "selma"

[Mazie1209]

Yep, I have had  yearly MRI's but they were always just of the brain, never anywhere else.  In fact I still dont know why the Neurologist decided in Oct. to do the neck! Im glad she did I suppose, but now wish they would of done it years ago, at least it would give me an idea about the time with the syrinx.  Now doing CINE MRI is fruitless the NS said, because the Syrinx is the major problem and the choice to getting surgery isnt about maybe or maybe not, he firmly believes its Required.
I am SO glad I found this site, as people who do not have this, have NO idea what I am talking about, or why I am so scared to have the surgery. Or even how serious it can be!!
I DEF. will be using this group to help mull things over....I  guess I know in my heart I really need the surgery, but part of me wonders, if I dont, maybe it wouldnt get worse, and I would live like I do now till Im an old lady!! Its the what if!!! Oh to have a crystal ball....

Mazie :)

[STL5]

I have Chiari with a syrinx and CSF blockage.  Although I believed the first NS I saw, I went ahead and got a second opinion from another NS.  He confirmed what the first NS said and made me feel more comfortable about the diagnosis and my options.  He even offered to send all his notes to another NS if I wanted a third opinion.  I would recommend getting a second opinion.

[selmaS]

  Oh...so u had yearly brain MRI's but they did not check ur cervical spine, nor ne other part of ur spine...that is a problem...did they ever do a CINE MRI?

If they had they may have been more apt to look for a syrinx if they found a CSF blockage....

We r not trying to talk u into surgery, just to getting the best opinions, by the best informed drs u can....

  I had my surgery and I do not have a horror story to tell....but most that do well afterward leave sites like this and go on with their lives...only those that continue to have issues come back or stick around.

And like Pam mentioned many of us have had symptoms our entire life, but considered most of them "our normal"....and not until getting a dx did we put the pieces together.

Not having major issues now, I can see y u r hesitant to have surgery...but just think, u might feel even better, and be able to put off something worse in the future.....

We r here to help u mull things over if u wish : )

  "selma"
  

[pamk5]

Hello Mazie and welcome to our little family.  Surgery is a very personal decision but I feel that if you have a syrinx that it is not really negotiable anymore. The risk of permanent damage to your spinal cord and paralysis is just too great.  I dont have a syrinx but have an 11mm herniation and am waiting for a surgery date at this time.  I do have a ton of symptoms so for me it is not negotiable.  I really need to try to get some quality of life back.  I am glad you have had limited symptoms.  

I went thru quite a few NL's and NS's before I got to a CM specialist and I agree with Selma that alot of horror stories come from having a NS do surgery who only does this a few times a year.  Hopefully you have a NS who is a CM specialist close to you and dont have to travel too far.  Most of us do have to travel to find one.  If you do this the difference will be obvious to you.  

Also,  once I was diagnosed alot of what I took for "my normal" I discovered were actually Chiari symptoms.  Like being extremely clumsy, difficulty swallowing, blurred vision, ect.  Things that I had lived with most of my life with.  I dont know if this is the case with you or not.

Again, welcome and I hope you find the answers you need to make the right decision.  

Pam  

[Mazie1209]

HI!
My last MRI was in October of 2010.  Since 2002, I have had yearly Brain MRI's, which showed no change, this october, for some reason my Neurologist decided to MRI my neck also,  and that is when the Syrinx was found.  So really I have no idea or does anyone else, when the Syrinx formed, how long I have had it, or if it is growing!  And honestly I feel very good, the damage the NS says I have doesnt affect my day to day living (hyperreflexic reflexes, and very mild sensitivity loss to hot). I think that is where my issue is, I feel fine, and great, and after the surgery I may feel WORSE!! As I wouldnt be getting it really to relieve any symptoms! But on the other hand, I dont want the syrinx to get worse...
I am looking at getting a second opinion,.
Thanks for your reply!!

[selmaS]

  Hi and welcome to the Chiari/Syringomyelia forum.

I do not have a syrinx, but had surgery to help avoid one forming....once u have one, it will continue to grow and if u r showing signs of nerve damage, it could lead to paralysis....this horror stories with chiari surgery r from those in my opinion that went with the first surgeon that said u will be like new, this will fix it, ...which is not the case....u need a true chiari specialist and have to know there r risks as with ne surgery...

Having PFD surgery is not a cure or a fix, it is just to restore CSF flow and help avoid the formation of a syrinx....and if u have one it can possible help reduce the size, many shrink after the surgery.

I do not know who ur NS is, or when ur last MRI was...but, to have been dx'd in 2002 and now in 2011 find u have some perm nerve damage is not good.

Please get another opinion and do it as quickly as possible...the medical profession moves slowly and u do not want to wait too long.

Be sure they test u for other related issues like tethered cord, Ehlers-Danlos.....sleep apnea...etc....

  Only u can make the decision....but, u really need the right dr too, the wrong one makes for many of the horror stories u have read.

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

"selma"