CM with Syrinx = surgery?

[engelsflugel]

Hey everyone,

after an MRI scan I was diagnosed with Chiari Malformation with a degenerative disc and a narrow, but long syrinx at the height of this disc. I live in Germany and I've read that it's not that easy to find a good doctor or specialist, so I'm still looking for one. I want to be well prepared in this topic, so I read a lot about CM... but I don't find the answer for 2 questions:
1. Is having a syrinx = syringomyelie?
2. Will patients with syrinx + CM go under a surgery?

I'm just trying to stay calm as long as I'm waiting... For a week now I don't really have any symptoms, except tingling hands, but just as long as I don't do anything... As soon as I start normal daily activities, such as carrying things, cleaning, even gift wrapping, my back and neck starts to hurt. :( Luckily my headache is so little, that I would rate it maybe 1 on a 10 level scale.

I know that everyone is different, I just hope that I can avoid any kind of surgery in the future...

Thanks and regards,
Netti

[selmaS]

  Hi Netti I can "hear" your frustration in the words you wrote...and I totally understand.

You will want to research true Chiari Drs....having the right Dr is key....the more you see the more confused you will get especially if they are not specialists of Chiari and ALL related conditions.

Hang in there

[engelsflugel]

Hey SelmaS,

thank you for your reply! I was recently at a neurologist and he confirmed, that I have Chiari Malformation, but he did not say what type... (probably type 1, I would say) There was one strange thing: he sent the images to a radiologist and both of them said, I don't have any syrinx, while the first one said, I do have. I checked the images myself and on the side sections there is just a very thin and barely visible white line, but on the cross sections in the middle of the spinal cord there is a white dot, which is bigger at the reported area, otherwise it's visible on every image. Maybe that's what the first doctor saw and the recent one just checked the side sections. To be honest, I'm not sure what that means, I would be very thankful if someone could check my images and say something, I uploaded them on my profile.

The doctor said, that my headaches are probably caused by my tight and stiff muscles and not the chiari, but that's not sure. Painkillers and antidepressans was his advice for me. But next week I have an appointment for a nerve examination, so we will know why I have tigling in my hands.

I don't want to make a diagnosis by myself, I just want to be sure, that everything is normal and I don't have to be afraid of nerve damages in the future. If the syrinx existed, it's also probably so small, that it can't cause my problems, at least that's what I think. :) I'm just not sure, if it's the right thing to ignore it, I have no idea, I feel a bit clueless. I forgot to mention my symptoms, so here they are:

- headache: for 8-9 months, it comes in 2 types, a pressure kind of headache, almost 24/7, but it's not that bad and a pulsing headache, what starts in my neck/back of my head and spreads down + forward behind my eyes, nose, forehead, ears and sometimes teeth.
- everytime I stand up I get a headache for around 10 seconds, then it goes away
- tingling: for 2-3 months in my hands all the time, it's getting worse if I use them in any way. Periodically I have this problem for 10 years now at least. For a week now I feel it also in my legs.
- numbness: it comes from time to time too, but after a few days it goes away. Mostly in my arms.
- pain: neck, and my whole back. In my hands, especially my fingers and palms. For a week now pain in my lower back, what spreads to my tights and comes sometimes with numbness
- vision: light sensitive, if I go out and look up, it feels like an electric shock in my eyes what goes into my brain. I don't have double or blurry vision, but have problem with reading and focusing, especiall on texts. I could describe it like my eyes ignores some letters or spots, I dunno.

Overall condition: getting worse sadly. :( Easy things like cleaning, washing the dishes, packing some presents makes me headache after 20-30 minutes and I need to take a break. Lifting and carrying things makes my hands hurt and they are getting weaker and weaker. Christmas was a disaster, cause packing in all those gift made me a terrible back pain and the next day a strong headache, what ofc didn't go away, even if I took 3 painkillers. All those pills I took then started to ruin my stomach, so I stopped taking them and try to rest as much as I can and do nothing, what makes things worse. It helps to avoid the bad pains, but obviously doing nothing for the rest of my life is not an option.

I stop writing now, I will write some more questions later, now the syrinx/no syrinx is more important. Thanks once again!

Netti

[selmaS]

  Hi and welcome to the Chiari forum.

to answer your question is a syrinx Syringomyelia...yes it is.

and to answer your other question  do patients with Chiari and a syrinx have surgery...yes. I had surgery bcuz I had a CSF obstruction and wanted to prevent a syrinx from forming....and a syrinx left untreated can create perm nerve damage.

I wish we had a list of Drs started for your country, but so far we do not...so if you find a Dr/Drs well experienced and informed let us know for anyone in the future that may come seeking help.