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Old 04-07-2005, 05:13 PM   #1
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New member/?'s about syrinx

Hi, My name is Missy, and I'm 34 yrs old. I found out I have a cervical spinal syrinx starting at C-7 and going down to the mid-portion of T-2 with no associated Chiari Malformatiom about two yrs ago. A few months ago I started having alot of dizziness
(lightheaded, not room spins) when I turn my head, and look up and down. I have weakness in my arms. I sometimes get numbness, and tingling in my hands, and arms. I also get bad cramping muscle spasms in between my shoulder blades My last MRI showed a 2.3 by 0.6 by 0.6 cm central syrinx with mild thinning of the spinal cord surrounding it, and mild effacement of the CSF space. My Pain management doctor has referred me to a neurosurgeon who I have an appt with next month. My PM doctor says its probable that I will have to get a shunt put in. Does anyone know if the thinning of the cord is something that will have to be fixed? Also, what # in the measurements of the syrinx is the width? I've read that its the width of it that causes problems, not the length. And, what does effacement of the CSF space mean? Any info would be great. Thanks for your time!!! Missy

Last edited by missyh12; 04-07-2005 at 05:31 PM.

 
Old 07-04-2005, 02:28 PM   #2
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Re: New member/?'s about syrinx

Hi Missy,
I am new here, but can perhaps help you a tad bit.
Our 13yrold daughter has a syrinx (due to Chiari) that goes from c2 all the way to the very bottom of spinal canal. Hers is an hour glass shaped , some areas are wider, some are narrow.
The syrinx puts pressure on the nerves which can cause numbness, tingling.
Unfortunately from what we understand so far these symptoms could be permanent .
Our daughter has right hand/arm/shoulder/face numbness/tingles. She is scheduled for Chiari decompression next week , the goal is to fix the chiari in hopes that it will make the syrinx dissolve , if not then she will have to go back in and have the shunt placed in spine to drain the syrinx.
I would definately recommend getting this fixed , as we have learned that the syrinx can eventually cause paralysis and lose of bowel / bladder control

Deb

 
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Old 07-05-2005, 06:53 AM   #3
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Re: New member/?'s about syrinx

All i can tell you is to find a good NS who has had ALOT of experience in treating your particular problem.i had/have a cavernous hemnagioma inside my cord at the c7 T 1 level.I ended up going to our local university hosp(my third opinon actually) as they really see some of the more bizarre and rare types of neuro disorders.They are also up more than most NSs on the latest treatments and surgical techniques.Since this is a teaching hospital I just felt that I was in the best possible hands with an extremely experienced neurosurgeon.Good luck.Marcia
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 08-01-2005, 02:34 AM   #4
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Re: New member/?'s about syrinx

Hi out there! I'm new to this site and I have just been reading all of your experiences with A.C.M and Syrinx, I also have been suffering with very clear symptoms for at least ten years but was only diagnosed in june 2004 with both of these conditions.
I envy your experience of treatment, I live in Edinburgh Scotland, and have been waiting nine months for an appointment with a neuro. I am now showing symptoms of Fibro, and have the added complication of having an allergy to any drugs containing codine,I have tried Tramadol which made me throw up, trying to survive on paracetamol and anti inflamatory drugs at present. As you will all appreciate I'm pretty much at the end of my tether. Any advice would be great.

 
Old 08-03-2005, 07:33 PM   #5
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Re: New member/?'s about syrinx

I had surgery for decompression for my chiari and syringomyelia. mine goes from c2-t10 and even though some say the syrinx is thinning I am still having problems. It is one of those things you really need to treat sooner rather then later to stop nerve damage.

 
Old 08-29-2005, 01:25 AM   #6
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Re: New member/?'s about syrinx

I was just diagnosed with syrinx inside my spinal cord, all I know at this time that mine is about 2.5 cm and is located around lumbar 1 .
Actually I am not sure if I had any symptoms before because my hands get numb but the way I am sleeping I curled my hands myself in my wrists.
I had hysterectomy in February and all of the symptoms of syrinx has started right after my hysterectomy.
One day I had experienced terrible pain in my hips going down to my ankles.
And pain in my shoulder blades.
My doctor gave me trodol ( sp ? ) shot and my lower pain is gone but my upper is still there.
I have really bad pains between my shoulder blades or inside my ribcage on the left side.
I am going to see orthopedic surgeon in 2 days but from what I have researched on my own I will probably have to have surgery to avoid more damage.
I am not that bad right now, my right shoulder blade is little bit numb and it itches a lot (i am not sure this is related or could be some allergy to lortab)
I would like to hear from someone who is gone thru the surgery and how you feel.
I understand the damage area will not improve.

 
Old 08-29-2005, 07:12 AM   #7
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Re: New member/?'s about syrinx

troka, have you had your upper spine checked for possible problems with an MRI?or even the possibility of having another syrinx up there as well?it would be very safe to assume that the upper body symptoms that you are having would be no way related to a syrinx anywhere in the lumbar area.it is just not possible given how the nerves all run in your spinal cord.Just wondering,as this really needs to be looked into and as a seperate issue from your lower body syrinx.hope it is nothing major,it sounds like you already have more than enough to deal with right now.I DO know THAT feeling well,lol.marcia
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 08-30-2005, 02:02 AM   #8
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Re: New member/?'s about syrinx

Hi Marcia
Actually i had 2 MRI but i am not sure if they have checke the upper spine .
I will talk to orthosurgeon today and i will ask him what those 2 mri shows .
Becouse i never heard about syrinx i wasn't really paying attention and from the begining i had pains in my hips and my legs , my shoulders were not that bad .
However from all of the posts i read no one is talking about removing syrinx just the shunts and collapsing it , so it makes me wonder can this be done , i mean removing the cyst ? Mine is inside my spanal canal .
I will post later what the ortho dr said about it , but my father's claient who lives in Poland and she is a dr herslef said it has to be removed .
My back is acting again so i better go to bed and take a sleeping pill however my pains are not so bed yet compare to other people i have read their posts here and on the other forums .
Maybe i will have some little hope it can be done to stop it to expand more .
Marcia i have to say i am so happy someone is actually answering to my post i am getting little bit depresed and it is actually really hard to take my thoughts together to make sense of anything i write .
I am very appriciaeted people are willing to talk here i have to stop baby myself and stop crying , my husband is not the best one to talk to he thinks i am making just to much about nothing .
Hope to make some friends here
Eva

 
Old 08-30-2005, 06:30 AM   #9
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Re: New member/?'s about syrinx

Hey we all all in this crap together you know?most people who have never delt with all of this overwhelming crap just do not understand just what it is actually like being us.I would not just suggest to your ortho that you get an MRI done on your C spine, at this point, i would demand one.the symptoms you are having really do indicate a possible problem in that area..You really need to find out just what may or may not be up there.you cannot treat what you don't know is there.good luck and keep me posted,marcia
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 09-01-2005, 03:47 PM   #10
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Re: New member/?'s about syrinx

Hello, Unlike the other posters, my son's syrinx was not a secondary condition of chiari. His just happened. Possibly a malformation (slight one) during embyronic formation.
He had burning and tingling in his hands and legs were weak. one dragged like an ogre. He lost his ability to write and had migraine headaches. 5 Mri's shows that he had a blockage from T7-T10 and was about 3. cm wide. it caused a 40 degree scoliosis in about a year and a half time which is very progressive. His symptoms only got worse as they always will. We were fortunate that we did the surgery in a quick enough time that all his nuerological symptoms were restored. The scoliosis even relaxed fortunately.
He had the surgery last year around this time. He was in TX children's for 4 days. He was in a lot of pain. He is autistic and very rarily shows emotions of pain. He did not spare those feelings this time. However, he was walking 2 days later and we were released 2 days after that. If asked today, he says he would do the whole thing again. his headaches and all the tingling and pins and needles disappeared so quickly. He is very thankful for his doctors at TCH. He has been cleared to resume all activity and is doing very well. The shunt was about 3 inches long and has worked wonderfully.
I hope this helps. I know it is frieghtening, but I think you will be amazed at how much better this will make you. As long as you are free of Chiari, the incidents of this returning is low. My doctor has been doing this surgery for about 20 years now and states that he has never had to repeat this on the same patient a second time. His name is Dauser, he is in Houston. He may be able to refer you to someone in your area.
I wish you hte best and keep us informed.
Tracie

Last edited by Traciedee; 09-01-2005 at 03:48 PM.

 
Old 09-02-2005, 12:15 AM   #11
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Re: New member/?'s about syrinx

Hi Marcia
Well, I went to this ortho guy and actually all he did was reading my MRI report, he even didn't take one look at all the MRI and x-rays I brought with me.
After he checked me for neurological problems and have decided I don't have any he send me for another MRI, my neck.
He didn't want to talk about my syrinx actually getting really mad that I read crap from the Internet and listen to bull from other people.
Maybe he was right saying my shoulder blades problems are not connected to my syrinx, but after all I do have syrinx over 2.5 cm and 4 mm wide in my lumbar 1.
So right now I have decided to wait to see the results from this MRI, beside he has send me to physical therapy which in this moment I have no idea what to do.
Shouldn't I wait first and see what is the problem and than sign up to the therapy or just go ahead and start one?
I am still having pain in my rib cage and my spine between my shoulder blades feels like someone has beat me up really good.
Because he didn't want to talk about the syrinx I have, and because I was a pain in the ... and wanted to know if I should worry about it or not he finally gave me an answer while we were leaving.
He has said exactly this words: surgery is for paralyzed people so they can be more paralyze.
Well, at this point I have stopped to ask anything.
I have decided to put together all of the Mri.'s and x rays and send it to some syrinx specialist who could read those mri's and let me know if I am in any danger from this cyst.
Here in Las Vegas we don't have any one specializing in this direction so I am willing to pay and send my MRI to someone who could just read this and explain it to me.
This ortho guy is a spine surgeon and specialist from scolosis.
But my pain is here every single day and I am tired from lortab which is also upsetting my stomach.
So we will wait for this MRI on my neck (i think is C cervical if i am correct)
Thanks Eva

 
Old 09-03-2005, 06:01 AM   #12
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Re: New member/?'s about syrinx

wow, this guy sounds like a total a**,you know?how does figure that surgery is for people that are paralyzed?Did he obtain his MD from a cracker jacks box here or what?Lose this guy asap,he is offering you absolutely nothing that you really need here,honestly.I can almost state with 100% certanty though that the pain you are currently having between your shoulderblades is in no way coming from the syrinx if it is actually located down in the lumbar area,or anywhere below the area of your pain.The nerves down in that area all go downward not back up.There are nerves located at the lower C and upper t that DO go back up to the facial area but that is wayy above.You do need to see a good neurosurgeon.i personally have had much better treatment and answers to my many questions from neurosurgeons than any of the other types of docs I have seen for all of my many c spine issues.Right now, getting that MRI done on your C spine is really the most important thing for you at this point.You should not have to send your records to spine specialists to get answers.Get a referral to a actually see a good spine specialist or neurosurgeon.once that MRI is done and what is actually found there will be what tells you what the next step after that will be.but at any rate you DO deserve much better treatment than you got and are getting from an ortho who thinks that only paralyzed people should have surgery.what a putz.has he never done surgery on anyone who was not paralyzed?please ,for the sake of your health(and sanity??)lose this ortho as quickly as you can.please keep me posted,K? Marcia
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 09-03-2005, 12:30 PM   #13
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Re: New member/?'s about syrinx

Hi Troka, I too am a new member here although I have been reading these posts for some time. It was surprising to see someone that is from Las Vegas. I live there too and have been struggling with doctors for 3 years to try to find some relief from this pain. I have a syrinx at the C5C6 level that I believe was caused by an auto accident. I have had acdf at that level plus surgeries on my shoulder and wrist. I have also had a very difficult time finding a doc that knows anything about a syrinx. If you would like to contact me through email let me know and I will post my email. Maybe together we could find some answers.



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Old 09-05-2005, 01:00 AM   #14
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troka HB User
Re: New member/?'s about syrinx

Hi snoozieq
what part of las vegas are you in , we live close to mount charleston , this is why i always go to Teneya to see doctors .
I didnt get the response from the people from this ortho guy about my mri appoitment , i was very dissapointed becouse i was talking to her thursday and she said she will call me friday and nothing .
I will do this 3 rd mri and change the doctor , contact my insurance company to give me available neurosurgeons and in the same time i need more lortab .
Is there something as good as lortab but maybe better for stomach , lortab is making sick some days and some days i am ok .
Today i am ok becouse i didnt work looks like my job is killing me slowly lol , i am hairstylist and my hands do the work all day , never had problems before until 2 months ago .
Do you have any good neurosergueon ?
thanks Eva

 
Old 09-05-2005, 01:03 PM   #15
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Re: New member/?'s about syrinx

Hi troka, I live off of Ann and Jones so we are both out in the northwest part of town. I have seen so many of the doctors off of Tenaya also. I have been to 3 different physical therapy offices on Tenaya also. I am now seeing a pain management doc that is on Rancho. I don't know how we are supposed to contact each other since there was a message on my last post that emails cannot be given out. Are you seeing doctors that are right next door to the hospital? I have not been to a neurosurgon just a neurologist, plus 2 orthopedists. Not to mention the other orthopedists that I saw who did absolutely nothing for me. They have put me on Pamelor and zanaflex which I take at night. I was taking other pain pills such as ultram and percocet after the surgeries on neck, shoulder and hand. Since I have kids and need to drive them to school and such I can only take the ultram and it just takes the edge off so I can sort of function. I could not even imagine using scissors much less standing up all day using my hands. Some days I only make it on sheer willpower but I am sure you can relate to that. I was a substitute teacher going to school full time when the accident happened and I have not been back to school since. I also have not worked but I have been rehired by the school district so as soon as I am able to take some tests I can go back to work. My syrinx is in my cervical area and I get horrible headaches all the time. The pamelor has somewhat helped them but they seem to be coming back stronger and I hate to have the dosage increased again. I have had doctors do the same thing-look at the MRI report and say the pain cannot be coming from the syrinx. Well there are too many people who have a syrinx and say the same thing about their pain. Have you visited the American Syringomyelia Alliance Project site yet? It is also called ASAP. They have alot of information about our condition. I know it is so hard to finally see a doctor and have all of that hope and when you leave you are so disappointed because you did not find any answers. We really are in need of some specialists inthis town. Let me know how things are going. Sue

 
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