coping with a syrinx

Where do I start?...About 6 years ago I had a tree stand accident, a friend and I were putting up a lean-to stand when it shifted and feel on the back of neck. I saw stars for a couple of seconds but still had feeling in all my extremities so we finished hanging the stand. When I got home and told my girlfriend about it she convinced me to go to the hospital. They took x-rays and said they didn't see anything so I never thought anything more of it. Not long after though i started getting numbness in my left hand and my dr. said it was a pinched nerve and there was nothing they could do for it. I also have degenerative discs in my lower back and see a pain management dr. for which allows me to work and enjoy the outdoor lifestyle that I've done my whole life. About 4 months ago I started geting a numbing, tingling and burning sensation in my right hand and had an MRI done wich confermed a syrinx on my neck at c5-c6. The vertabrea at that site where blown out and pressing against my spine. After many test and specailists I finally went to Johns Hopkins Neurological Center to see Dr. Belzburg who confirmed a syrinx..A month ago I had surgery to repair the vertabrea at c5-c6. Dr. Belzburg told me we shouldn't do anything with the syrinx right now because of the severity of the surgery. We'll just keep a close eye on it for now. Needless to say my life has been turned upside down because of all this pain and suffering. My girlfriend couldn't cope with the pain I was always in and left and my outdoor lifestyle ( fishing, hunting,golf, baseball, etc.) has come to a complete halt..My question would be is there anything I can do to help ease the pain and burning sensation as far as diet or certain excercises...Also I'm an artist and tattooist and if nothing else I would like to be able to at least draw without the constant burn....If ther is anybody who can help in any way it will be greatly appreciated..Thanx, Charlie312

[Spaceystac]

Sorry to hear about you problems Charlie, but not much can be done about your Syrinx pain. You might want to do some more research because your symptoms will most likely worsen over time, but if you are lucky they will stay the same. Im not a doc, I have just done alot of research. Keeping up with as much of your normal activities as much as possible will keep your muscles from getting weaker, so the more you can force yourself to do art and tattoo work the longer you will be able to keep doing those things. Try topical analgesic for your burning, sometimes the icy hot or bengay  can distract you enough from the pain/ burning sensation. As far as your girlfriend leaving goes, she was selfish not to stay with you through hard times, so she obviously wasn't marriage material.  I have had hypersensitivity in my hands and feet for as long as i can remember, along with scoliosis since childhood. Recently diagnosed with degeneration's of spinal facets and vertebra. Bulging protrusions, a syrinx from C3 to T1(no thoracic mri yet) and a tarlov cyst on my S2. I have no clue what is causing my syrinx and dont know where to start. All I know is people like us should share our knowledge so we can improve our quality of life. If there are any doctors are out there the specialize in a syrinx that read this, please reply. I am sure Charlie and I have a bundle og Q's we would like to ask.

[shanmomof3]

Spacestac i'm sorry your having these problems. Were you checked for chiari Malformation? Did your mri say anything about tonsillar ectopia? A syrinx can be caused from other things but is largely associated with chiari. Just something to look into. We do have a forum here on medhelp and have members who have had just the syrinx. We'd love to have you in our group. Best of luck in your journey. -- Shannon

[Spaceystac]

Shannon, I had an mri on only my lumber and cervical spine so I need more scans. I just had that done on 1 09 10 and I paid for it at 50% discount through a special clinic that helps people with no insurance. I had to bring $411.08 with me to pay up front for my mri that I had to beg my doctor to agree to. I don't even know how far down the syrinx goes because technically the cervical images stop at T1, so I'm pretty in the dark on what the cause of my syrinx is, I don't have any trauma to the spine in my history. I have however done a lot of research in the past 6 days. I would love to join your forum can you send a link? I was having trouble finding any forums on the topic so thanks for the invite!:) Stacey

[shanmomof3]

Hi stacey i cant send a link bc i'm using my phone but if you go to the list of forums go down to the c's and its chiari malformation

[Age77]

I totally understand your problem as i have  a syrinx T4 to T8 which i have had for now 9yrs.I lost my job,friends & social life asa result of this condition but ive had to realise that people dont want to know about your problems & im now fine with that & prefer to keep it to myself as people dont understand except my parents.
I can only now work one to two days a week & that seems to be more then enough though its npt enough for me.I try & walk everyday as well as swimming & doing light exerciese sometimes using small weights to strenghten my arms.
I suffer back pain 24/7,neck pain,arm & shoulder & numbness in legs,hands,feet & back at different times.
I have had pone surgery that was going to Shunt the Syrinx but when the opened me up they fpund i had a tethered cord which was a reason i could hardly bend over so they fixed that but left the syrinx hoping it might shrink after the surgery.
You need to keep positive & keep your mind active & even though life doesnt seem fair with this is there are alot of people out there worse off.

[shanmomof3]

Hi Age77! Did they check you for Chiari Malformation? Tethered cord and syrinx usually, but not always, coincide with chiari. I'm sorry you have to live with this it really is no fun but like you said life goes on. :) Shannon

[DaveG77]

I have a syrinx as well between C5 and C6, I am also a complete quad since '98. The syrinx was found in '05 after starting to have odd pains and burning 24/7 in my legs and hands. This has sucked way worse than the initial paralysis. The doc said my syrinx wasn't big enough to operate on. I am now on lyrica, topamax, methadone, and oxycodone as a result and still in constant pain. I have OD'ed twice now trying to control this pain. Oh, and the poster who said no one understands is absolutely right, not even my parents.

Dave
SCI C5/C6

[selmaS]

Hi Charlie...sounds like ur syrinx was acquired from the injury......I am sure u should be able to get sound advice on what can be done if u were to find a specialist. To locate one, ask about chiari as a dr that specializes in chiari also specializes with syringomyelia.

Like chiari, there r many drs that do not feel that a syrinx can cause symptoms, but we all know better, Shannon and Stacey have a congenital form of chiari as do I....and we find it diff to find a dr that understands so to expect family and friend s to is being too hard on them.

For support I invite u to join us in the chiari forum here on MedHelp as we have several members dealing with a syrinx.

I pray u find the right dr and care to help u feel better

"selma"

[Age77]

Yes i have been checked for the Chiari condition & that is not present in my condition thank god,with the Syrinx,disc problems & apprantley at 28yrs have the neck of a 70yr old so will definatley neck full neck replacement of my discs but im too young for this too happen yet,they think the Tthered cord may have strangled my neck over the years i had it & then the Syrinx well who knows how that appeared there saying either the manipulation i had gone wrong with a physio or i was born with it but im sure it was the physio as i was fine before that day.

The key with a Syrinx is you must find a surgeon willing to think outside the box as i had seen 4 of the top in nsw & only one would operate everyone eles said come back with paralised & i knew that would be too late.
I have one question to any women/girls out there that had a Syrinx before trying to have children...Is it possible & had you had surgery prior,this is very important to me so anyone that knows anything please let me know.

[Spaceystac]

I have not had surgery for this yet, but from what I have read you CAN have children. You just cant push so you have to get a C section. Then it can be hard to hold a baby due to weight lifting restrictions. But it can be done, just make sure you have help on hand from trusting friends and family!!!

[Age77]

Thanks for your reply,im not even in a relationship to be worried about having kids but its something thats been on my mind latley that if i want kids can i or not & no sites can anwser this question & ive been too scared to ask Doctors yet.
So you have only a Syrinx or the Chiari as well???
What is your condition like & how do you cope??

  

[Spaceystac]

I only have a very small syrinx and a Tarlov cyst. I dont know If I have Chairi or not but Im sure its congenital.  I am still in the middle of finding out about my condition. I cope day to day, some are better than others. And with the help of the people on the Chiari malformation and Syringomyelia forum. You should join it, there are many people on here that can share their coping skills, and knowledge of these conditions.  There is also a thing called the health pages that contain a lot of info and links that can be very helpful in finding reputable informational resources.
  I can definitely relate to feeling like I have the neck of a 70 year old, Im 26 and have disk buldges, protrusions, ddd/ djd, reversal of my cervical lordosis.  It is not uncommon for these things to be linked to EDS a connective tissue disorder.  That is also linked to spinal cord cysts and  or Dural Ectasia. Lots of things can be related to these conditions.

If you check out my profile you can see the communities I have joined, just click on the Chairi malformation forum. Hope to see you there!!!

[hurtin4life]

I also have a Syrinx that causes significant pain around T4 and have been treating the pain via meds. It does stop me from doing a lot of things I enjoyed previously and I'm considering getting some better scans and going to Duke (here - UNC and Duke are the most common) Duke is better. I've learned a lot about imaging over the last 2 yrs as my now 3yr old daughter has had 3 separate major brain surgeries. The people running UNC MRI's don't even know the difference between a 1.5T (or Tesla) and the 3T which has twice the resolution let alone advanced protocols.... Also had I listened to the typical neuro around here my kid would be a vegtable - instead it's taken hundreds of hours of research and we found the best in that field is in AZ at the Barrow Neurological Institute. Well I was reading the profile on the two surgeons that worked on my daughter (whom you would NEVER know has been through what she has) and they also specialize in Syrinx... I can't help but think they could help people like us as well.. Or at least know who else are great neuros in that field.. My pain is manageable most of the time unless I do something that sets it off (like carrying my child for more than 15mins...).

I'm probably on the same tightrope several of you are in the "should I persist for surgery ?"  "Will it be worse than where I am now ?" My aunt was an insurance attorney - she has also had back issues and also represented a lot of patients that had a negative outcome from surgeries - she thinks it's safer to stay on meds as long as you can then move to a surgical option ? Comments ? I may add that I'm 32 and it just seems crazy to have problems like this at this age ?

[stephanie48]

Hi Charlie:

I totally feel you frustration right now.  I was once a very active person, gym 5 days a week, biking, hiking, power walking, etc and I now can't no do any of them. I was just recently diagnosed with a syrinx between my c5-t1 and a bulging disc at c-4-c5.  I don't see to many of my friends anymore because I am usually is so much pain and I just lie down and watch tv and on the days that I work by the time I get home I med up and go to bed.

I am so sorry to hear the your girlfriend left you over this condition but obviously if she loved you she would of stayed and supported you through this so in some ways you are better off without her.

My advice to you - try and keep you head up and definitely keep a positive attitude through all of this.  

Take care!

[roaring725]

I also have a syrinx, no cm, and mine is actually due to degenerative disc disease. I understand where you're coming from. I'm 30 years old, have 3 children, and am currently pregnant with my 4th. I was just diagnosed with this a month ago... so I had no idea before I got pregnant with this baby. Obviously you CAN have children, I'm proof of that! I do, however, need to have a c-section because of this. I can't go through natural labor n delivery, as the pushing would cause more permanent nerve damage, and make the syrinx larger. I also can't have a spinal or epidural, I have to be under general anesthesia. I am in constant pain, and am told that I'm not a candidate for disc surgery in my lower back. I have a disc totally gone, and 2 more herniated right above it, and 3 herniated discs in my cervical spine that actually caused the syrnix. Pain meds are the only option I have left so far. After the baby comes, I have another appt with a neurosurgeon to talk about the option of draining it, but as far as disc replacement surgery in my neck, I'm not sure. I was diagnosed due to numbness in my right arm/hand, loss of strength and reflexes, and it also caused speech problems. I'm thankful that they did find it while I'm still pregnant, because not knowing and going through a natural labor and delivery could be disasterous. I have a multitude of problems, along with those in my arms/hands (it has taken over my left arm/hand now, too) I also suffer incontinence, stiffness in all my limbs, severe headaches/migraines, vertigo, fatigue, falling/stumbling, thinking disturbances, vision problems/loss at times, muscle spasms, and not to mention severe pain constantly. This in turn, has caused depression and anxiety. I can only hope and pray for some relief soon from all of this, but I'm not holding my breath so to speak. I also hope that I don't become paralyzed or wheelchair bound in the future. I take one day at a time, and some days are bad, and some days are worse. You are right though, there isn't much research in pregnancy, labor and delivery with our problem, so it's hard to find out what's best. Good luck to you, though, and don't let this stop you from enjoying motherhood. It makes life more difficult, but not impossible!

[myrose372]

I'm not sure if my comments will be relevant at this time but I successfully had another child after being diagnosed with Chiari and a syrinx (T6-T10), possible EDS. I had a tubal reversal and became pregnant within six months. The Neuro doctors recommended c-section but I decided against it. My OB-GYN said he supported my decision but we induced a week early and hoped for a "small" healthy baby.  My 1st child was 9lb 10oz. That was 3 years ago. My symptoms did not progress until after my recent female surgery. Now I'm in pain 24/7.  We believe the position I was placed in during the surgery put pressure on my spinal cord causing more damage.

Best of luck to you.

[Robinetty]

I have a syrinx throughout the length of my spine.  I have found that digestive enzymes help with the pain, along with an anti-inflammation diet.  Krill, nopalea are also supplements that keep the pain down for me.

[mod58]

Robinetty,
Have you seen a Neurosurgeon? As I also have a syrinx which also extends the entire length of my spine.
What options have they provided you?