Diagnosed feb 2014

[Rob_Spiers]

Hi All i was diagnosed with chiari and a massive syrinx in feb 2014, my syrinx extends from c1 to t4, i've been seen by  neuro surgeons at the walton centre in the uk, mr pigot,and mr brodbelt who i believe are both chiari specialists, i was supposed to have decomp surgery beginning of this month but now having cine mri on 23rd, they're telling me i need the op asap but i'm terrified to the point i don't think i can go through with it ! My symptoms were initially neck pain but now have numbness pain in arm and feels like cramp in my hand. I'm getting worse and ******** myself ! Anyone here had surgery at walton centre ? i believe its one of the uk's best for this stuff, really worried about making it through the op n what i'd be like afterwards, i can still do most normal day to day things like drive etc at the moment, recently bin getting the ****** headaches to boot.

[Just_Gina_Fair_Banks]

Rob, I had my surgery just 18 months ago.  I'm still recovering, in so far as my neck needing to regain strength.  Most of the problems before surgery are gone, most notably the horrible headache I had for 8 years! I didn't have a syrinx, but when they entered my skull  the CSF sprayed out because it was impacted so tightly...going hardly anywhere! In the last few months I had added symptoms of periodic numbness to one side that affect Ted my head, face, and my arm on the same side would become heavy and sluggish.  It affected my speech too! So things were really going south in a hurry! On the day of my surgery, I was scared to death!  I don't think anyone who has had the surgery goes in without fear.  I think when you've got someone messing with your head, heart, or back, we all know that something could go drastically wrong and change life as we know it.  The question you need to ask yourself is how well are you doing now and if it continues to get worse, how well will you be? Decide if it's worth it to stay the way you are now.  Is that quality?  For so many of us, that was an easy question to answer.  That being said, no one has the same recovery process.  It's physical as much as it is mental.  You have to understand early limitations and listen to what your body is telling you.  You need to communicate effectively with your doctors--no question is a bad question! Every single person here has a similar story, but the details are all different.  You have to make a decision you can deal with.  Make sure you have reliable support. In my case, faced with it again, I wouldn't hesitate.  This recovery is a piece of cake compared to the agony of my 8-year headache!  

I hope this helps you!!

[Elisaandbucky]

Hello. It is good to have you here with us. We will all support each other.

Your posts seem to indicate that you have a high pain threshold. Sometimes that serves you well because you can keep going on with your life activities. I have always been inspired by strength shown by those who are in pain. However, I have read that pain is like a message. It carries information and indicates that thereof a problem.

As Kristy mentions above, your big concern is the syrnx and keeping it from getting larger. Even if you can manage your pain, trust your doctors and their advice.

Coming to this forum, you will be comforted to know that your fear is similar to the fear many others have. I hope that can bring you some peace.

[Rob_Spiers]

I don't know the answer to that but I know that area is affected on me as they've told me that's what's causing the numb/pain in my neck and shoulder ! I will ask next time I'm at the Walton centre which is in the 23rd for an mri update which I believe will be cine as well, they've scanned my head n whole spine I don't have tethered cord or anything above my brain pushing down, just a very obvious chiari n a large syrinx, they seemed amazed at how relatively symptom free i was, altho it is progressing :(
Rob

[kristy12]

I was just thinking what you have been told about living on credit. Possibly a human being dies when the spinal cord is severely damaged above the c3-c2 level. I am not trying to scare you but it's worth consideration I guess.

[selmaS]

  I have gained weight as well....do ask to have related conditions like EDS ruled out and let us know when you schedule surgery, we have a thread you can post your surgery date and then we post a prayer thread for you....

  Keep us posted <3

[Rob_Spiers]

I think surgery is inevitable it's just a matter of when and tbh its prob going to be in the next couple of months, it just knocks you for six tho doesn't it, i was doing a heavy lifting job and going the gym running a lot n now i can't and im getting fat around the middle ! lol i was expecting something after my mri just not quite that ! Thanks for your replies it helps
Rob

[kristy12]

It's up to you to decide. You can wait and see but if the damage progresses, you will probably blame yourself for not doing it quickier. Probability of syrinx collapse is about 80% but in your case the most important thing is to stop it from growing.

[selmaS]

  Yes when a syrinx is involved it is more dire to have surgery...and I know your fears as I had surgery 5 yrs ago, and if needed I would do it again....I really loved my Dr and trust him to help me again....

I know surgery is not a cure and I am still having issues, but I do have other related conditions, so I am happy to deal with what was left over....

All I can tell you is you are not alone, and being afraid is normal.....

[Rob_Spiers]

Thanks Selma, i've had it explained to me and i understand, i know i need the surgery really i'm just scared to death ! i have chiari which is causing the block and its hoped that by having pfd my syrinx would reduce in size (no guarantee) i'm just hoping i can have the courage to get through it before i get worse, i could happily live with the symptoms i have at the moment but they've explained i'm living on borrowed time :-(
Rob

[selmaS]

  Hi and welcome to the Chiari forum.

I can understand your concern and worry over this surgery, but your Drs should have explained with a syrinx that means you have a CSF obstruction...when CSF flow stops so does the information that flows thru the nerves in the spinal cord, which is why some of us have drop attacks...

Having a large syrinx can also lead to compression of the spinal cord and brain stem and nerve damage, once there is nerve damage it is permanent.

Sometimes we can choose to have surgery, when the CSF is still flowing and there is no syrinx....I had surgery as my flow was disrupted and no syrinx had yet to form, so I had mine to help prevent it.

Only you can decide, but talk more with your Drs as to why they feel surgery is the best option for you.