new diagnosis

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new diagnosis

Postby edfromohio » Sat Feb 16, 2008 4:55 pm

i was diagnosed with syringomyelia in 1-08 after yrs of back pain. i have had 5 courses of physical therapy. the most recent in 12-07. i have been seen by my pcp for several years for bad headaches but nothing hs really helped. i also have mild disc degeneration somewhere in my mid back ( cant remember due to having so many problems!). i was seeing an orthopedic surgeon due to thinking the latest pain was a neck strain of some sort(began to notice bad pain picking my 1 yr old up). he noticed i was not responding to p.t. and sent me for mri. i was also noticing some neurological symptoms( tingling in arms and fumbling and dropping things which i mentioned to physical therapist). the mri revealed an abnormality and they sent me for another mri a week later with contrast where the syrinx was found. i have many questions and i know some may have been asked before as i have not looked at all the different threads. i am new to this site and looking for any help. i am going to read all responses and also look over other posts. the n.s. did not answer any of my questions and believe me i had 3 pages full of questions. after doing some research i have noticed that this has been going undiagnosed with me for a while as i have had many of these classic symptoms for several yrs. when i went to my pcp for a sinus infection after finding out about this i mentioned it to him and he acted as if he had never heard of a syrinx or syringomyelia.


my syrinx is c3to c6. a lot of the ones i have seen on here seem to be lower. anyone know the differences between them?

is a high syrinx in the cervical region any worse or easier than one in the lumbar region?

sizewise is this syrinx big?

when i went to see neurosurgeon 1-30-08, they did not have my mri results so he rescheduled me. he also wanted to do another mri to check for chiari malformation. i brought up my pain, which seems to be a common theme but he seemed unsympathetic ( handed me a script for 50 vicodin and said he would see me in a month) from what i have read opiates are not effective on nerve pain. i do have the dull aching pain for which the vicodin seems to help a little but the nerve pain is still there. what are commonly prescribed medications for syringomyelia?

for nerve pain?


i'm scheduled for my next mri on 2-21 and the followup/ results on 2-28. i was not particularly pleased with the n.s. i'm at even though from what i have heard about him he was ok. ( could of been the extremely long lobby wait or the long time in between visit and time to schedule the next mri/ visit or the unsympathetic ear to my pain). does anyone know of anyone who specializes in syringomyelia in northeast ohio?

i know i have more questions but cant think of them right now. the past couple of days have been really bad with the pain. i know this is a long post and i apologize for any typos.i'm looking for some help and answers thanks in advance to anyone who responds. :)
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new to SM

Postby christinewebb » Sun Feb 17, 2008 1:00 am

Ed,

I am sorry to have to welcome you to the board. I know you are very frustrated and I wish I could say that there is a cure all for what we suffer with, but sadly enough there is not.

I will try to answer as many questions as possible.

As far as the headaches, I am glad they are checking you for CM, that is where the tonsils of the brain stem are too low and protrude from the base of the skull/spine. It could definitely explain some of your symptoms if you have it. The good news about that is that you can have decompression surgery for CM. If you want more information on that I suggest you post on the other area of the board and not under the disabilities section. More people access the other area and will be more than willing to share thier stories with you.

Secondly, If you are taking the vicoden to help with pain, well - it won't help. It will help take some pain away, dont get me wrong, but we have nerve pain. The most recent drug I have been prescribed is Lyrica - is is new on the market and given to patients with Fibromyelia - since Fibro is nerve pain, my doctors think this will work on me. I have to admit it has made my pain more bareable - but it has not taken it away. From what I understand, it is the same with Fibro patients. A combination of Lyrica, Lortabs and Flexerile help me sleep through the nights these days.

I understand you are on a very long journey to figure out what this diagnosis means to you. Your not alone. But you do have to understand that it is important that you find a doctor that is familure with this condition. For most Doctors, it is a subject that they review during a short period in medical school, but most docs dont know it and can not treat it. You are close to TCI, they can help with CM, but there is no cure as of yet for SM unless you want it to get drained.

From what I understand from my own docs here in Vegas, they wont touch me to drain mine which now runs from T2-T9, because the damage they may cause going into the spinal cord could be worse than the damage that is caused by the cyst.

If I were you, print out the material for your pcp. Take it to them or fax it over to them. You are going to need someone to coordinate your care and for most it is their pcp. After he/she has had a chance to review it - talk to them about being your coordinator. You will need to see a pain management specialist and do not be surprised if you end up seeing a shrink as well. This condition comes with alot of disappointment and depression. You are all of a sudden someone you have never met before. Many of us end up on depression medications to help us deal with the changes that we have to endure. I know myself - it has been helpful. I am on Effexor - it has been helpful and does help a bit with energy levels.

Anyway, be your own best cheerleader. Find out everything you can and make sure you keep copies of everything you get. You will need them down the line. You can go to the TCI website and find out more about them and ask your pcp to see if you can get a referral to there.

More than anything, share the information with those closest to you. You are not the only one who is going to have to go through changes. Anyone who is use to you being a certain way is going to have a hard time relating to you after you deal with this for a while. And dont ever be ashamed of losing it. If anyone could understand the kind of constant pain you are dealing with - they would be breaking down themselves.

I hope this information has helped. If you need more answers- remember, post on the other areas of the board. Not everyone comes to the disabilities area. Also, if you have LTD make sure you use in while applying for SSDI. If that is the direction you are going to take.

Good luck and sorry to have to welcome you to the family!

Christine
Christine in LV NV; Do not fear, you are blessed beyond your imagination...

Car accident Oct 05 -DX Jan 07 SM T1-T6; back surgery 06 2 plates & 8 screws; 3 kids and a dh that suffer along side of me each day
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Re: new diagnosis

Postby trendz » Wed May 28, 2008 8:50 pm

Hello! Some of your story sounded too familiar. i live in western pa. Near Pittsburg. I had the surgery becuz my NS said that was the only way to go. He completly mislead me and i was wondering what NS doctors you seen? My Doctor could care less as well. He also scripted viacadin and sent me on my way. Never telling me this is a disease. he just told me to get surgery and i would be back to work in two weeks. Ive been off work for 7 months now. I just don't understand how there are not more lawsuits with these doctors all ignoring . What is happening to the medical field. There are sooo many of us being ignored. It is soo sad. Have you gotten anywhere with your doctors yet?
Tranquility to All
Alana-PA
Luv Mufin to my hubby, Mommy to my angel Kaden, Daughter to the most incrediable family, and Boss to my amazing group of employees who are keeping my bus.running during my storm

SMT6-8
Dx-10/07 Surg-12/07
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Re: new diagnosis

Postby wendi » Thu May 29, 2008 8:44 am

Dear Ed and Trindz:

Both of you need to get to an expert. TCI in NY or Dr Oro in Colorado.

Also, go to TCI's website and watch their videos. chiariinstitute.com. These will help educate you on your condtion and any sister ailments that you may have.

You both need an expert. There are many drs around the country who have no clue. You need to see someone who understands and can treat you the way you deserve to be treated.

Peace,
Wendi in PA
ACM 7.5mm B4 TCS 2.4mm post op
TC ,TCS @ TCI on 1/3/08,
chronic sacrolitis
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Re: new diagnosis

Postby cash71 » Thu May 29, 2008 11:06 am

Welcome Ed. I'm glad that you found your way here. Unfortunately many of us have had very long roads to dx. For me it was about 15 years from when I first had symptoms to diagnosis. The size of a syrinx that matters is width not length. Anything greater than 5-6mm wide is considered large mine is 4mm at it's widest so it is considered small. Small does not mean it doesn't cause pain and other symptoms though. any size can do that. As far as location cervical syrinxes are more commonly assoc. with chiari but not always. The location will determine what kind of symptoms you have. http://www.futuremedicalsupply.com/scip ... lcord.html

the first thing you need to do is educate yourself. I would start with the asap homepage and www.thechiariinstitute.com videos these are both great resources. Next you should get yourself to a NS with expertise in the care of cm and sm. You will save yourself pain and aggravation just to get to someone that knows what they are talking about right away. Syrinxes are caused by something that blocks the flow of CSF. Chiari is the cause in 80% of cases. YOu need to find what is causing yours and then treat the cause. If you NS isn't looking for the cause or says you were born with it find another.

There are many different meds that specifically target nerve pain and you are very right that these are more suitable and will help more. I see a pain management doc and this would also be a good idea for you. they are the experts in all kinds of pain and can work with you to find the right combo.

Edward C. Benzel, MD
Chairman, Cleveland Clinic Spine Institute
The Cleveland Clinic Foundation
Cleveland, Ohio 44195
(216) 445-5514


Dr. Benzel is in NE Ohio and is considered an expert. This would be a good choice. I also have a blog (link below) where I have included all my favorite links for those that want to learn more. You may want to check it out too.

Hope this helps and welcome again.

Caroline
Be kind for everyone you meet is fighting a harder battle (Plato)

Syrinx C3-T9, CM zero, OTC, cranial settling, dysautonomia/POTS, and ?EDS

see my blog for more info: http://www.chiariandsyringomyeliaincanada.blogspot.com/
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Re: new diagnosis

Postby Ryzing » Thu May 29, 2008 9:05 pm

Hi Ed - and welcome to ASAP!

Sorry to hear of your diagnosis & your suffering with symptoms. Where in Ohio are you? I live in Erie County, very close to the lake.

Diane
Syringomyelia - C4-T12, Fibromyalgia, Scoliosis, DDD
"If you don't change your beliefs, your life will be like this forever. Is that good news?"
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Re: new diagnosis

Postby Pickrel_D » Thu Jun 05, 2008 3:13 pm

I too have seen Dr. Benzel and he is a really excellent doctor. He knows how to talk to you to extract the right information. You are in good hands at the Cleveland Clinic. They seem to have their act together.
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Re: new diagnosis

Postby babyboy16 » Fri Jun 06, 2008 9:17 am

I also live in Western PA and have been seeing a NS in presby. I am scheduled for surgery in July.
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