Chiari and Syringomyelia pain

[Twinky318]

Hello. I am a 45 year old female that was diagnosed with Chiari Malformation at the age of 24. I had surgery on the back bottom part of my head where the took part of my skull out and put a piece of mesh in its place to allow the fluid to be released from my spine. Well, 5 years ago I got diagnosed with Syringomyelia and had surgery to remove a large cyst that attached to my spinal cord and to drain a second one. The surgery seemed to be a success but two years ago they found another cyst on my spinal cord. They said the surgery is too risky and I can't seem to find a Surgeon to do it. For months now I've been suffering with severe pain on the left side of my neck and head, down my arm to my hand. I can't feel temperatures at all on neither hands or on my left arm and it's very hard to walk or go up the steps. No doctor wants to help me with my pain, not even my medical doctor. It's as if they think all I want is a quick fix and if that was the case, I could drink to get drunk. I went over 20 years dealing with the headaches and backaches associated with Chiari and when it got bad I just we to the ER. But I can't deal with this pain much longer. What can I do to show my doctor how severe this pain is? The ER gives me vicodin or percocet, and the pain management doctor tried giving me gralise but it didn't work and I can't even travel that far in a car anymore. I have to fight to breathe and I'm not sure if it's due to the cyst or not. I'm just tired of hurting so bad everyday all day long. Any suggestions would be helpful and appreciated.

[Twinky318]

Thank you so much. As soon as I find out something I will post and give an update. Your support is so helpful. God bless you. ♡

[selmaS]

  Keep us posted when you get other info.....and  I hope you continue to post here for support <3

[Twinky318]

I'm confused as well. The third syrinx that he seen when he did my surgery to remove/drain the other two was really small and he wasn't concerned about it because he thought he closed the area where the fluid was coming in at. He said the shunt wouldn't work because if he put the tube where the syrinx was at, I would just developed one somewhere else. I don't understand that at all. The last neurosurgeon I went to showed me on my films where the chiari surgery was still working, because there was no blockage to prevent the fluid from being released. I will definitely look for a chiari specialist around here because there has to be a reason this syrinx isn't small anymore. The fluid has to be coming from somewhere. Thank you for clearing up the whole syrinx and cyst thing, and thanks for your help.

[selmaS]

  A syrinx is a cyst like sac....but not the same from what I have read.

From everything I have read regarding Syringomyelia is they treat Chiari or hydro with hopes it helps the syrinx shrink or resolve....if that does not work they may use a shunt or stent to drain it, they do not remove them.

This is why I am confused ....

Since the Drs you have been to can not offer help, try sending your info to a true Chiari specialist...they may be able to guide you to some treatment.

[Twinky318]

I don't have a chiari specialist, and the neurosurgeons I've been to including the one that did my chiari surgery said there is nothing that can be done because the procedure is too risky. I had an MRI over a year ago. I gotta get a new one. My doctor said I have to go through a neurosurgeon to get one done.

[Twinky318]

I thought a cyst and a syrinx was the same thing, but it was a syrinx on my spinal cord. One was really large and it attached to my spinal cord. When he tried to remove it it popped and they put me on antibiotics during my surgery and cleaned the area where it leaked out. The other one was in a different location and he drained that one and said he closed the area that the fluid was coming in at. The one I have now was there when he did the surgery on the other two but he said he wasn't worried about it because it was small and he thought he stopped the leak. The last neurosurgeon showed me my MRI images and where the decompression surgery was still keeping the fluid released off my spine. There was no obstructions or anything. This syrinx is causing pain that I never had with the other ones. This pain is much more severe and is from the back of my head on the left, all the way down my shoulder and down my left arm to my hand. Constant pain, and it is sometimes hard to talk or breathe. I have spasms after I walk when I sit down. Mostly in my lower back. I also have bad vision and hearing loss in my left ear. It rings constantly too. My hands cramp, but I have carpel tunnel so that might be why they do that. There are times when my legs won't stop hurting, like I can't stop moving them. It's hard to explain. Thank you so very much for replying to my post. I've been dealing with this pain for months now and its just getting worse. I don't know what I can do to make the doctors understand how much pain I'm really in, so I tried coming on here to see what I can do.

[selmaS]

  Hi and welcome back to the Chiari forum...it's been a while since you posted.

I am sorry to hear you continue to have pain and symptoms post op.

I am also confused that they removed a cyst... or was it a syrinx ? The reason I asked is a syrinx is a cyst like sac that fills with CSF and can grow until it compresses the spinal cord which causes the pain and symtoms you described.... Having the PFD surgery which you had tends to allow CSF to flow normally and for a syrinx to shrink....they do not generally remove them. and many times they are too small to do any other surgery but if large enuff they might place a shunt or stent to help it drain.....


Do you know if they checked you for this b4 your original decompression surgery?

Have you had a MRI recently? Do you have a true Chiari specialist?

[Lottida]

Hi fellow Chiarian.  I am so sorry to hear that you are suffering so much.  My husband has a lot of pain like you describe & he had his surgery in 1997 (he is now 48).  He has been on a ton of different meds over the years, but has only found Avinza to help.  It does not make him drowsy & he is still able to work.  He does sleep on gel ice pads at night to neck & shoulder blades which help.  He still has a syrinx as well.  The numbness is permanent for him & he can't feel temperature changes to right hand.  He suffered severe burns to his hand because of it years ago.  I too have a Chiari & just had decompression surgery 3 1/2 weeks ago with a Chiari specialist.  My husband spoke to my doctor about his symptoms & he  scheduled my husband for MRI of brain, entire spine & CINE (to check CSF flow).   Doc said lots of times scar tissue from previous surgery occludes CSF flow which will cause progression of syrinx or new syrinx to occur.  

I would suggest to find Chiari specialist to review your case.  I'm pretty sure there is a procedure to insert a drain just to drain syrinx, however the underlying cause needs to be addressed as well.  VP shunt is sometimes needed.  There is a great list of doctors on this forum that you could use to start your research.  I am a nurse & this forum has helped both me & my husband immensely with both support & knowledge!!!  Hope this is of some help.  Good luck & hope you find some relief soon!!!