Perhaps this is a question for Dr. Trumble, but I am looking for some information regarding a syrinx. Background is posterior fossa craniotomy with duraplasty in April 2012. MRI in December 2012 showed decompressed pseudo and syrinx shrunken from 9 mm at widest point to 5mm at widest point. Much improvement in neck and arm pain (headaches still there but infrequent). Now a year later arm and neck pain is back, just not as severe or frequent. Headaches and nausea last 3 weeks but trying to rationalize stomach flu going around, and being a teenager, having sleepover and no rest yada yada. She had slight headache and no nausea today and is at a 4.5 hour SAT prep class. Headache is more on top of her head and not the throbbing on the sides, or in the back of her head. NS scheduled cervical MRI on Monday to look at syrinx (which I know is the only way to assess her condition). I was told by NS that reoccurance is rare, but does happen. Yikes.
Joalexa,
I am so very sorry your daughter is not doing well. She has really been through a lot. I didn't have a syrinx, so I sent this Discussion out to our total Membership for their input. Please let us know how she is doing.
Tracy Z.
Hi Joalexa, my son has had decompression surgery twice because his syrinx kept returning. In fact, he will need a third now because his syrinx has returned to his C-spine. He is only 4 now but will say the same thing about the top of his head hurting and arm pain. He gets nausea and vomits, usually late night. For him, it seems the more he does and the more tired out he gets, the more likely he will to be nauseas and vomit. His NS said sometimes a repeat decompression is needed especially in younger patients, boney growth re-growing and scar tissue which will block the flow. He has never had to do a third decompression he said, so this is very disappointing. It may be the same for your daughter that she'll need a second and it will do the trick. I wish you all well!
Thanks Tracy for your concern. She was doing so well for a while. Hopefully the MRI will be ok. Toni, I am so sorry your little one is going through this. I am seriously considering going to Dr. Jeffrey Wisoff or Dr. Mark Soudeweine (both in NYC) for second and third opinions once her MRI is completed and we get the results. Toni, may I ask where your son is being treated?
I also contacted Dr. John Heiss at NIH, and evidentally there is a research study going on right now (they are looking for participants) for syringomelia and its natural course. The protocol is pretty intensive but treatment and possible surgery is free and they will put you up in a hotel and give you airline tickets, if needed. Not sure if this study is right for us, as she is not 18, but I thought I would share so others can take the opportunity to apply if they want.
He sees Dr. Mark Iantosca at the Penn State Hershey Medical Center in Hershey, PA.
Joalexa said:
Thanks Tracy for your concern. She was doing so well for a while. Hopefully the MRI will be ok. Toni, I am so sorry your little one is going through this. I am seriously considering going to Dr. Jeffrey Wisoff or Dr. Mark Soudeweine (both in NYC) for second and third opinions once her MRI is completed and we get the results. Toni, may I ask where your son is being treated?
Did she get a plate to the back of her skull? If not she might be more susceptible to scar tissue binding down around the foramen magnum, causing restriction all over again. If the MRI shows an increase in size, then she may have a tethered cord, or re-restriction of CSF flow. If the size is not larger, than it may be time to look into cranial cervical instability. I’m so sorry she going through this again, so disheartening and quite devastating. Please don’t give up, there are some more stones turn.
Jenn
Thanks Jenn. The MRI on Monday will show us where we stand and what the next step will be. The fact she is feeling fine all day today gives me hope the MRI will show everything is stable. I will mention cervical instability as well. I think that’s just an X-ray to determine? Might as well get everything checked out. There is no plate, just a Duragen patch that was laid on. And I was mistaken, her surgery was 2012 and the MRI Dec 2012 so this is actually a year since her last MRI. I have wondered if the decompressed pseudo could crowd the area. Really I can’t even think straight and Monday can’t come fast enough.
To see instability she would need a flexsion extension upright mri and rotationL CT scans. Are they going to do a Cine to check for flow? Please let us know what happens Monday. I so hope and pray it looks great.
I have multi located syrinx, i've seen many doctors and all of them recommended me not to do a surgery cause it will come back again. i wish they can find a good cure for this disease , do some researches and studies.
hope everything will be fine for your daughter. good luck.. keep strong.
They are doing cervical MRI without contrast. That’s it. I guess that will be a good place to start. She never had a cine MRI, just MRA. NS said her flow was really blocked and was restored after her surgery, as evidenced by the syrinx resolving although it may never disappear. Thanks everyone for your good wishes and I will keep you posted.
Sally, Dr. Heiss at NIH is doing a study currently and looking for participants. See my post above for info. It may help you!
Well, she had the MRI and the NS said it looks terrific. That the chiari looks decompressed, the fluid collection in the neck has decreased, and most importantly, the syrinx is nicely decompressed. While we are relieved that the syrinx has not returned, there is no explanation for her headaches and neck/arm pain. I asked the NS about cervical instability, and his reply was that there is no indication of this on the MRI, and no real reason to suspect it. Our next step is seeing the neurologist, because she may be having migraines (I never knew migraines can cause neck and arm pain, but apparently they absolutely can). At least we can rule out the syrinx...whew! Thanks for all your help, this group is fantastic :)
Good news Joalexa.. am really happy for her
Thank you Sally. I really appreciate it :)
I’m so glad the syrinx is still on its way down, that’s great! I hope she gets relief soon from the pain.
Thank you! We have an appointment with her NL to discuss possible treatment for migraines in a few weeks. Someone just brought up to me that her birth control pills could be causing many of her symptoms...I wonder if anyone had headache and nausea with taking the pills? She started in August and her symptoms progressed in Oct/Nov. Just a worried mom searching for answers here.....
oh yea sure if she just started. I believe it goes away as she's on it longer. Definite possibility.
Yes, birth control pill can absolutely cause the headaches and a lot more. It's been a million year ago for me, but I had all kinds of side effects from them. Number one was headaches that eventually turned into migraines that would hit me out of no where and I would get violently ill and wouldn't be right for weeks afterwards.
Thanks gag and Toni, I called the gynecologist who completely agreed with you...she said to not stop until the cycle is done in 2 weeks, but my daughter could not take it anymore and threw her pack away :( She woke up slightly queasy but nothing like the day before so we will see what happens next. I did make an appointment with the gyno in a couple of weeks...she was on them for acne control, and she said it just wasn't worth it!
Just an update…after throwing out her birth control pills the nausea and vomiting is gone! She gets motion sickness in the car, but not when she drives which is strange, right? Still has the headache but mostly after laughing a lot or being very tired. No headache in the morning. So it appears the birth control was the culprit. Thanks again to everyone on this forum who commented.