New a/Syrinx, idiopathic, congenital, post traumatic???

Have a question about a symptom, procedure, medication, diagnosis, research, or coping? Ask questions and share what you know with others

Moderator: pmaxwell

New a/Syrinx, idiopathic, congenital, post traumatic???

Postby Syrinx810 » Tue Feb 28, 2012 5:04 am

Well, I've been reviewing this site for some time, a little over a year and also belong to others.

I have found a lot of support and information and in order to try and get some normalcy in my life, the search continues.

Alot of what I'll right I wasn't aware of until it all started to make sense to me over the last year.

I'm a 41 year old ironworker/welder by trade. I've spent the last 10 years doing a job that I loved.
I am married 18 years and the father of a 3 year old son. I like to hunt,fish garden, etc. an outdoorsman.

The last two years I have been on long term disability from my employer "unfit for duty".

I have suffered from sinuses but no other health issues or none until recently. So here's my story. The brief version.

In the summer of 2007 my wife were going to a BBQ at a friends, we never made it. We were hit head on by an oncoming car. Airbags deployed and we were thankful to be alive. The driver who hit us was killed. Banged up, off work a few months for p/t for multiple injuries, but walked away and life got back to normal, I thought. My wife continued to complain of abdominal pain and swelling, " it's a boy". Life is good. Good job, family, life was really good.

During this time I started getting headaches, not sinus headaches but right lower scalp across to right eye like a brain freeze. But long lasting like a migraine. Then some balance issues, but didn't worry muck. The specialist I was seeing thought new baby and lack of sleep the issue. I agreed with that.

Then in December of 2009, I as at work and a portable scaffold we were moving got stuck raised up. After some wrestling we got the pins out and it dropped we caught it. The next morning I couldn't get out of bed. Lower back pain. Started p/t, meds, injections. When the low back pain started to get manageable, I realized I had this burning scapular pain and it wouldn't go away. Felt like a torn muscle in the back of my shoulder.

Now keep in mind I did hard work at high places for long hours. I've had alot of bumps and bruises, but that was part of the job. Same for outside of work. I continued to get treatment and work with some heavy restrictions. The dr's ordered a MRI of neck thinking nerve pain in shoulder. I didn't know until some time later that I had a cervical syrinx c5-6. 4mm/4mm. Some mild ddd at c6/7.

Now June 2010. Working a job and a 16 ft piece of steel falls, the rigging fails. I catch the weight with my left arm. End up with a torn rotator. Instantly had neck and shoulder pain and headaches. Two months later I have shoulder surgery and at my first p/t session I got vertigo and immense pain. It's all down hill from then on.

Now I have RLS,POTS, vestibular/ocular migraines. Elevated liver enzymes, along with several cervical and lumbar severe herniatios and bulges. I have seen several PM/R, neuro ent, neuro opthmology, neuro muscular neurology, neuro surgeons, cardiology, internal medicine. I have all these things and now I have syringomyelia? No cure, be misdiagnosed for years until you get to a specialist.

I'm probably saying nothing that you haven't heard. My life is falling apart. I kept thinking ok, it's gonna get better. You had some trauma and it's going to pass. Still waiting.

By November 2010 I was admitted to hospital. Running low grade fever for several weeks, felt like sinus infection but nose clear but ears plugged and ringing. Sweating on right side of neck, every night pillow soaked. Now visual problems, flashes of light and blurry vision, floaters. We think that you have meningitis or tuberculosis. Right eye dialating on its own. 7 failed lumbar punctures and a sucessful one and then a blood patch 3 days later. No TB or anything else that was abnormal. Syrinx may be post traumatic, but to small to be causing issues. Refer to psychiatry.

Now mind you I have all the meds, lyrica, cymbalta, narcotic, muscle relaxer, so many injections, so many test. Cardiac, vision,blood,MRI,ct,Myelagram,nerve conduction, balance, vestibular, psychiatric. I mean I have almost had it all. I want my life back. Everyone I see asks about litigation? Why. I didn't turn my w/c injury in on the first one, but had no choice on the 2nd one. I mean every doctor I saw that was like the first question after your name. Why!!! Does it affect my care? Of course not, we just need to know.

So I am going through all these tests and at first the syrinx was 4mm/4mm then after shoulder accident it's 2.5mm/25mm, then a year later it's 2.5mm/23mm. Now during the time I felt the worst it was at its largest. So again I'm doing everything I can to get back to work. My doctors at home support me, with SSDI, work, everything, but the are not chiari/syrIno spclsts. So neurology a year ago eventually sent me to psychiatry, they tested and counseled me and said psychologist for coping issues. Cope with what. Nothing is causing me problems.

I apply for NIH study, not candidate. Why? Maybe because post traumatic and surgery won't help. Told need to be under. Neuro surgeons care. See another one. Same thing syrinx to small nothing surgical and not the cause of the problem. So I research and I save, been on 50% wages for over a year. Denied SSI, if not back to work in two years with no restrictions no job. No job? No benefits, no Medicare. No house, no wife, no life.

So I get enought to get to a specialist. A real expert. This is just before the new year. It's been a rough couple years, health issues, new addition to the family. I want them to travel with me. I dont want to go alone. I wanted someone on my side and I couldn't stand to be away from my son, he gives me strength, strength to deal with the pain, to keep searching even though every door seems to close. How can I just give up until I find out what's wrong. I have to fight for my life back. Very emotional trip. 3 days, tests, mri's, bloodwork. Alot of you must know the drill.

So day one meet dr's nurse, go over history and symptoms. Very nice, very compassionate, says I would say PTS. I go to the hotel, hug my wife and say everything's gonna be ok, we came to the right place. Next day go over info for meeting with surgeon. Now I have a 8 inch folder with everything. They just want most recent MRI. Don't like the quality they want there own, refer me to eye dr, then to have labs for chiari/syringomyelia done. See you tomorrow. Day three meet dr. No chiari, shoulder drop must be nerve entrapment, no reflexes. Let's order ct of neck. Feel syrinx is congenital. Ok to have shoulder surgery again. Needed clearance from neurosurgeon to proceed, why? Because of syrinx. The doctors that didn't know about syrinx at least tried to help find out what caused it. Now I know the expert says ive had it all my life. Well why didn't I feel so bad for the first 39 years? I'm taken in tears to another room to wait for the nurse I spent the last two days telling my life to. She appologizes for not being there when I saw surgeon, I said I feel like he didn't know anything about me. He commented how he has people that sit in this chair and this disease has a serious impact on there life. I'm thinking it's having one on me, that's why I'm here. I'm spending mortgage payments to try and find a way back to work and back to a better life, not just taking 16 pills a day to somewhat function and not alleviate the pain. The nurse said the dr asked me if you had any litigation and I (she) told him we never discussed it. I had the option to leave it blank on their paperwork. I left it blank. I explained that I did. She wasn't sure why he wanted to know. I think I know. He doesn't want to get involved.

He calls me with ct results, and wants to refer me back to neuromuscular neurology. I've already been treated and refered to psychiatry, why would I go back and how. Feels its parsonage turner syndrome. Orders nerve study. I get it done ASAP. Call to say done and results coming to you by Friday. Get call back stating surgeon can't give results, here we go again. Call neurologist that ordered test he said he can't give results ordering physician has too. I get results. Study normal.

So now I have SSI hearing, expert dr overturns my primary's decision as well as others. As I call to ask for further tests . Lumbar puncture to check Csf pressure, cine MRI. Advised no, doctor has a note in file. There is nothing I can do surgically to help this patient. Last words "diet and exercise". Great but that doesn't stop the pain. That doesn't keep me in contact or under the care of a doctor that specializes in this disease. That just closes the door.

So here is what I have: cervical syrinx c4/c7 three levels of moderate/severe herniation small bone fragment. 3 levels lumbar the same. Developing scoliosis. Balance/motion issues. POTS, tinnitus, shoulder dyskinesia, RLS, sleep apnea, vestibular/ocular migraines. Liver disease and get this "depression".

Symptoms: numb/tingle hands feet and calves, blurry/double vision, ear pressure/ringing. Muscle spasms/twitches, neck and shoulder pain,scapular burning, low back and leg pain. Loss of sensation back and shoulders. Right leg goes out and fills with fluid, headaches.

What worsens symptoms: dropping Baro pressure, pain increases, visual problems, headaches and I get this internal vibrating/humming that is in my face, neck and chest. My race almost feels like its pulsating with my heartbeat.
Physical activity. I can walk and try to everyday, but not long distance and I hurt everyday. Lifting causes light headed/motion sick feeling. Driving and reading cause problems if not in moderation. I will get this tremble feeling throught out my body, but especially arms and hands.I visually look ok, but inside is completely different. I can't sit or stand for periods of time. Sometimes I use a cane, especially on uneven ground. If I close my eyes I can't balance. I have night lights in most rooms because if dark I lose my balance.

So I have tried to keep a sense of humor or sarcasm. But it is hard when you can't get a straight or consistent answer. How do you find the strength to keep going. I had accepted this disease, I was getting support, but I was still looking for answers, something someone else had tried and was doing better. I feel cheated, I had so muck hope for this expert opinion and I swear things are worse than before I saw him. I hear all the stories of misdiagnosis, waiting 10 years for a diagnosis. My diagnosis is there is nothing wrong with you, your syrinx isn't the problem and we don't know what is. I basically begged the dr nurse. Please don't take away what I have been diagnosed with unless your 100 percent sure. Well the dr is 95 % sure and I'm just the messenger. Sorry nothing else we can do. Well thank you very much you've done enough.

So I still have all the unanswered questions, if congenital can it become symptomatic? If congenital why does it change size? Why does the barometric pressure affect me so much?(saw rheumatology, no RA). How can I have vision prescription changes from one day to next? If post traumatic and 40% Csf blockage wouldn't that explain some issues?

My biggest concerns now are I have a open w/c case. I can't change that. I have a syrinx, I can't change that. And I want another opinion. But will I get an honest opinion or a I don't want to get involved. If Dr X says its not a problem then it's not a problem. It really doesn't matter to me at this point how I got the syrinx, I just want to know that I have done all I can to keep my quity of life. I have never filed a w/c case. I have always worked. I have never been a burden on society, but now I feel like a criminal. If doctors really base their care on wether or not they have to get involved. I think that should be criminal.

I really did try and post the short version, if anyone can offer some advice other than diet and exercise, please share. I really am in desperate need. I like to joke, my therapist says that's how I deal. But it's really either laugh or cry and there's alot more tears than laughter. The good news is I have alot more time with my son, which is good for me. I have found a lost relationship with god and I'm thankful to be alive and that my wife and son are alive. The other mother and wife and grandmother wasn't so lucky. Or was she? I don't know what to believe or do. It all seemed so clear. Get to the right place and move on. Now I search for something that doesn't exist. The dr did tell me even if post traumatic nothing they could do anyway. They don't realize the diagnosis is a help. It's a closing. It stops the search.

I appologize for the length but it sure felt good to get it out. I and I really do appreciate any feedback. I keep saying hopefully some day I can give back, but for now I'm still searching. So thank you in advance for your time.
Syrinx810
 
Posts: 14
Joined: Thu Feb 23, 2012 2:00 pm

Re: New a/Syrinx, idiopathic, congenital, post traumatic???

Postby karenb » Thu Mar 01, 2012 11:15 pm

Hello,

I've noticed your post for the past few days, but haven't attempted to respond because I felt there were others in better position to answer than I ever could. I also suspected my response might turn out to be about as long as it ended up being...

It sounds like you've had more than your share of bumps & bruises, and SM is surely one of them.

Syrinx810 wrote:In the summer of 2007 my wife were going to a BBQ at a friends, we never made it. We were hit head on by an oncoming car. Airbags deployed and we were thankful to be alive. The driver who hit us was killed. Banged up, off work a few months for p/t for multiple injuries, but walked away and life got back to normal, I thought.


Ditto. I was in a head-on car crash in 1993, but the only bone broken was my nose. My first sign of SM was about 4 years later, in 1997, when I dislocated a bone in my foot... and kept on dislocating it for several years. When I asked several neuro-surgeons (over a decade later) whether the car crash led to my SM, I was told that post-traumatic SM only occurred with a spinal fracture. I'm not sure I agree with them, but that's a rather moot point right now.

I was dx'd with SM about 4-1/2 years ago, just after moving to New Mexico. (I had been travelling back & forth caring for my parents, had closed their apartment, and done more than my share of heavy lifting... especially for somebody already using a cane.) I was put on a walker immediately, since I was collapsing at least 40-50 times per day, and was given medication & a script for a wheelchair. Gradually, over the next 18 months, I started using the wheelchair a little more, but finally ended up using it full-time about 3 years ago, following hand surgery (to correct a pinched nerve caused by my walker!). BTW, I had been walking with a cane and had been gradually getting worse for almost 10 years.

Syrinx810 wrote:So I am going through all these tests and at first the syrinx was 4mm/4mm then after shoulder accident it's 2.5mm/25mm, then a year later it's 2.5mm/23mm. Now during the time I felt the worst it was at its largest. So again I'm doing everything I can to get back to work. My doctors at home support me, with SSDI, work, everything, but the are not chiari/syrIno spclsts. So neurology a year ago eventually sent me to psychiatry, they tested and counseled me and said psychologist for coping issues. Cope with what. Nothing is causing me problems.


My syrinx is T6-T9, 3 mm at its widest. I was working from home (due to the move to care for my parents), so I was able to hide everything from my management - otherwise, I would have been the first on the list for the next layoff. Ultimately, though, I filed for long-term disability, and it was awarded 3 years ago. Some of my doctors were very supportive, but others said "Syringomyelia? Never heard of it... I'm too busy to look it up... see you in 4 months.". Oh, and the nearest neurological specialists were about 450 miles away (each way), and they were the ones with the brass cajones to tell me it was all in my mind! I nearly strangled that little resident attending!

Syrinx810 wrote:I apply for NIH study, not candidate. Why? Maybe because post traumatic and surgery won't help. Told need to be under. Neuro surgeons care. See another one. Same thing syrinx to small nothing surgical and not the cause of the problem. So I research and I save, been on 50% wages for over a year.


I applied for the NIH study as well, and was also not a candidate. I was told the reason was because my syrinx was realistically inoperable. (They were the 3rd neurosurgical facility to tell me that.) Apparently the key factor is the diameter/width - it has to be wide enough that the risks of inserting a shunt outweigh the risks of doing nothing. Either way, you have cord damage. (FYI, at that stage, my bladder was already paralyzed and I was in a wheelchair.)

Syrinx810 wrote:Denied SSI, if not back to work in two years with no restrictions no job. No job? No benefits, no Medicare. No house, no wife, no life.


I don't know how SSDI works with w/c. I did have a really good firm represent me for SSDI (Allsupp). It was awarded on the initial application - the only delay was that I couldn't actually open the envelope because I'd just had hand surgery!

Syrinx810 wrote:My life is falling apart. I kept thinking ok, it's gonna get better. You had some trauma and it's going to pass. Still waiting.


So... what do I say now... I feel your pain? I don't - I feel my own (similar but different) pain. I can relate to what you're going through? Yes and no - my situation was different, and I am now alone with no family support (my parents were both terminally ill when I moved back to NM, and they both passed away about a year ago). Are things going to get better? Darned if I know... I'm still hoping to simply adjust to a new normal. Do I care about what's happening with you? Absolutely, and I hope you start to get some answers. It sounds like you need a good NL/NS with experience in SM, and you also need a good pain management specialist.

Please know that, by and large, we are all supportive (and if we're not, we're probably having the same kind of day you're having). I wish you all the best, and you will be in my thoughts and prayers in the days and weeks to come.

Karen

P.S. Enjoy that baby - you're extremely lucky to have him! He is a constant reminder that life goes on and there's always a reason to hope and work hard to make things better!
karenb
 
Posts: 645
Joined: Mon May 03, 2010 9:41 pm
Location: Las Cruces, NM

Re: New a/Syrinx, idiopathic, congenital, post traumatic???

Postby whiteangel » Fri Mar 02, 2012 12:38 am

Hi I'm sorry for all your problems, not fun....I think because of your headaches and vision it could be that the Spinal cord fluid isn't flowing freely...if you had syrinx in the brain steam it would explain the issues your having...but you said it's a c5-6...so that's why maybe I think the spinal fluid isn't circulating or they should look in the brain steam...have a total spine MRI to rule this out...or maybe you have an infection in spine...go and see NS ASAP...hope that helps good luck...
WhiteAngel, Low Grade Astrocytoma Spinal Cord Tumour @ C-1 - T-6 surgery back'n 1970 @ age 4-1/2 Brain Stem Cyst, Kyphosis, Scoliosis, Heading down the quadriplegia road, unfortunately. http://whiteangel0.blogspot.com.au/p/my-story_06.html
User avatar
whiteangel
 
Posts: 25
Joined: Sun Mar 02, 2008 11:13 pm
Location: Sydney

Re: New a/Syrinx, idiopathic, congenital, post traumatic???

Postby wendi » Mon Mar 05, 2012 1:18 pm

Hello and welcome:

Well, you are just a mess aren't you? In that you are not alone. Many here are too! You have entered a very exclusive club that no one wants to be a member of, but we welcome everyone with open arms and gentle hugs. I hate to break it to you, but your life as you knew it, is over. The sooner you accept that and accept your new normal, the easier things will be. Having the support of your family and a group like this one will help tremendously. Sorry, I tend to be brutely honest and at almost 50, don't think I will change. What state do you live in? We may be able to help you find a good NS in your area that will help you. Also there are many in person support groups around the country too. There are many things you can do to make your life easier and manage your disease. An expert will help to make sure you don't have chiari, if you do, a PFD could actually help with the SM, which is why you need an expert, but your SM could very well be post traumatic from the MVA. You could have been born with a teeny one and the accident along with your job made it grow which could be causing your problems. There are just tons of things we don't know.

Search for the Tips for living with SM & CM post. There tons of helpful tips in there.

We are here for. You are not alone.

Take care,
Wendi in PA
ACM 7.5mm B4 TCS 2.4mm post op
TC ,TCS @ TCI on 1/3/08,
chronic sacrolitis
wendi
 
Posts: 3346
Joined: Thu Aug 16, 2007 9:48 am
Location: Whitehall, Pennsylvania

Re: New a/Syrinx, idiopathic, congenital, post traumatic???

Postby Syrinx810 » Wed Mar 14, 2012 1:54 pm

I just wanted to say thank you to those who took the time to reply. It meant alot. Still looking for info if anyone can share. Over the last few weeks the barometric pressure has been up and down and i feel horrible with anything below 30.20 when it gets to 29.00 i can hardly move. If anyone knows why barometric pressure would be an issue since i dont have rheumatoid arthritis i would like to know.

I might as well ask has anyone else had an issue with dr oro?. The point im making is they had me go to colorado just to tell me my syrinx is congrnital. Did they really need to do that? I cant afford to go somewhere else now and i still have questions with no answers. They said i have a note in file that says nothing surgical to offer this gentleman.

I am very disappointed. He doesnt know my history, my symptoms, and i truly believe because i have a pending lawsuit they dont want to get involved. Why else would he ask if i have pending litigation. It is really upsetting to read his poem about people suffering and then to be on the board of this site just to be concerned about litigation. I should probably let it go because he doesnt want to hear what i have to say, his mind is made up. But if he makes a decision based on legality. He shouldnt be a doctor and he definately shouldnt be allowed on the board of a group whos mission is to help people.

I wonder if he left the hospital and the sign fell and crushed his hands and he couldnt practice medicine anymore or if he was hit head on by a wreckless driver and Developed a post traumatic syrinx would he not seek legal advice? Like i said before, he made me sign a care agreement with my doctors at home, then turned around and reversed the diadnosis of my neurologist, neurosurgeons and pain management doctors at home that supported me. If he would have reviewed my records he would have known my history, then has the nerve to say treatment would be diet and exercise. 1 my diet isnt bad and 2 i can harldy walk let alone exercise.

I have read other post about his new philosophy diet and exercise. I didnt need to travel to colorado for that. Initially i wanted to think good about him based on his posts and his web page, now i regret going to see him. My life is worse now because now my doctors at home think dr oro doesnt think they know what they are talking about. A great way to build the doctor patient relationship.

Sorry if i offend anyone that thinks highly of him, but how can i feel any other way.
I have worked all my life, my career is over, my family life is holding on by a thread and i struggle everyday to make the best of my new life.

If anyone else that has a syrinx either congenital or post traumatic that suffers symptoms and has been diagnosed, please try and respond to me.

Sincerley, tom
Syrinx810
 
Posts: 14
Joined: Thu Feb 23, 2012 2:00 pm

Re: New a/Syrinx, idiopathic, congenital, post traumatic???

Postby carriejohnson08 » Fri Mar 16, 2012 1:13 am

I feel your pain Tom and can totally relate with the work comp thing. It seems like we are in a catagory below everyone else and it sickens me that the medical profession can treat us like this..Im disgusted I really am. Me and my husband are both victums of the so called comp care system and and its scary how they act as soon as they hear your a comp patent. We are human beings for god sake! That worked really hard and by some freak accident beyond or control we are stuck, dependant on a system that could care less about us and treats us like criminals! For years I like you couldnt figure out where the headaches were coming from but they came on gradually. Worse and worse everyday. I was a newby to my job and was the first female garbage lady in our area. So we werent sure how to procede. but I guess I wanted to impress everybody, I was so proud of myself and what I did it kept me going for a long time. But they hired more girls and soon I wasnt a big deal anymore. Then my route got bigger and bigger. I really tried to keep up. But my whole body hurt. And my left arm, the one I had to use for the joy stick wouldnt work anymore. I guess the body hurting can be caused by my psoriotic arthritis I think my whole body became inflammed it hurt to move. I have a post tramatic syrnix Dr Fox in sacramento said its inoperable he said DO NOT LET ANYONE TOUCH IT! And I wont I heard it can go terribly wrong so I would rather just try to live with it. Ive learned what not to do like dont lift over 5pounds, I do sometimes and I try not to but its hard. So I use my body in a way that it takes some of the weight out of lifting with my arms. Im weak so I try to ask for more help. It sucks but I would rather do that than have a headache for hours afterwards. I dont bend over all the way and keep my head up so its not upside down. Thanks ladys for telling me that it really helped! Its true my life is about comfort now its changed forever but the simple things become so much more important. Time with your children will help to deal with the pain. My grandchildren and my dogs keep us going! Its so hard sometimes the pain is unbearable! I guess when I started accepting that my life is going to be riddled with pain Ive come to accept it and try to make our lives easier to bear. As for ssdi I took them to court and once I explained I have syringo myelia he appoved my case I guess there is a thing in the medical acceptions about syringo? That you canlook up on their website. He never had a case like mine but was really interested when I told him what I had. I had to wait a year before I got to court but the judge was really nice. I hope I helped in some way please feel free to ask anything and I will try my best to help. We are here for you...
carriejohnson08
 
Posts: 74
Joined: Sun Apr 26, 2009 12:54 pm

Re: New a/Syrinx, idiopathic, congenital, post traumatic???

Postby Syrinx810 » Fri Mar 16, 2012 10:18 pm

I feel I owe the group an appology. My situation with my care should be kept private? But today I was on another site and someone posted that there daughter had been refused treatment by a specialist off the recommended doctor list and was told by the nurse the Dr was refusing to see them and gave no reason why. I snapped and replied "post the doctors name so the group knows who it is. If they can refuse to help a child we shouldnt be refering people to them.

Then I went into some of my issues. Basically be glad they told you on the phone and you didnt waste the time and money to be told that in the office. My post was blocked by the moderator because I said "Bad things about Dr.X" I responded I didnt say bad things, just the truth. I see doctors names on these sites all the time, but then I realized its just the good things. I think we should see it all. If the Dr's name is added to a list by the members I feel like we should see the good and the bad. It was decided that the Dr helps more people than not. So my post was removed.

I was suprised to see my post made it here. I just really feel strongly that with anything information is necessary to make a decision. Just because a Dr is on a list doesnt mean you will get the care you need. I hope the doctor is helping people. I understand that not everyone can be made happy. But what bothers me the most is that people in this situation have it bad enough. If I send my MRI's and you know my situation why not call and say "we cant help you" but dont have me spend 3 days out of town, staying in a hotel, taking cabs back and forth for the test you want done, eating out. Just to say congenital syrinx. You knew that before I ever got there, so why spend thousand of dollars for nothing but a treatment of diet and exercise. That just made it worse. The mri they had from me showed the same syrinx as the one they ordered. I just feel totally taken advantage of. I know my chances of getting help are slimmer now, who wants to deal with the guy that speaks badly of you if he doesnt get his way. But in my defense it sure doesnt seem right to me to have to go through all that. Send me home after day one. Then to further the damage, if you cant say it post traumatic because you dont have a MRI from before the accident, how can you say its congenital. Just say you cant help me, but dont turn the doctors that are trying to help me by reversing there diagnosis unless you are 100% sure. I will be taking the time to write the Dr a very detailed letter. That way I wont need to bring this to the group again. Its like the letter you write and burn except im not ashamed to send it. If I'm wrong I will post a formal appology.

I come from a military family, my grandfather was in the Army WW2,korea and vietnam and my father in the Marine Corps Vietnam 1967 to 71. They are both deceased but they used to tell me be honest and tell the truth. People may not like what you say but they will respect the honesty. I may not know much about Chiari/Syringomyelia, but I do know right from wrong. I have read alot of stories about other doctors, but never about the Dr's on the list. Now I've seen it several times in the last month? If this is happening to more than a few people, something needs to be done. I live in St Louis, and have found no local groups. I wanted to start one, but maybe Im not cut out for it. If I am only allowed to give one side of the story, the good side. Then its not for me. It would also be hard to advocate for a disorder that I dont suffer from. I truly believe I do. My son is watching me type this and I am so sorry to the parents that have children that are ill. These sites are a great tool. A place to find information that you cant find anywhere else. A place where people understand, unlike in my real world.

No one here has been anything but compassionate and kind. I hope to pay it forward someday.

Sincerely, Tom
Syrinx810
 
Posts: 14
Joined: Thu Feb 23, 2012 2:00 pm

Re: New a/Syrinx, idiopathic, congenital, post traumatic???

Postby karenb » Sun Mar 18, 2012 10:02 pm

Hi Tom,

I just read your post from earlier this week, and I feel really bad about what's going on in your situation - I've heard just what a bear worker's comp can be (at least in NM), and it was next to useless when I was living & working in NJ.

I'm so sorry you had the experience you had in Colorado. I believe the moderator really does try to act in the best interest of the group, and she's a very reasonable person. ASAP, as an organization, doesn't have a recommended Dr. list, but there are doctors that many of us know because of their connections with the organization, the fact that they specialize in SM and/or Chiari malformation, and/or members' personal experiences (both good and bad) with these physicians.

I went to the center to which my doctor referred me. Ultimately, I made about 8 to 10 trips to Phoenix (the nearest neurology center of excellence), to the tune of around 400 miles each way, ending up in a different predicament each time... I had semi-productive results only 4 times - got full spinal MRIs & MRAs, got to see a neurosurgeon specializing in SM (who told me I was not a surgical candidate), and got to see a urologist who was more familiar with neurogenic bladder than anyone here where I live. Ultimately, I filed a grievance against the hospital for how I was treated, but it did little good. The area of their neurology department that once had expertise in SM & Chiari was gradually becoming focused on Parkinson's (due to funding and institutional political wrangling), so I ultimately gave up.

I have other posts that are much less polite about my experiences, and they mention the institution by name - I didn't mention any of the doctors by name, since they are probably quite good at their specialties... For example, I was placed with a stroke specialist on my first visit (maybe "stroke" was the closest they had to "syringomyelia"?) and, while she couldn't do a thing to help with my condition, she was at least able to say "this lady's got something wrong with her and is physically stable enough to benefit from physical therapy." Sometimes I feel a bit embarassed about how strongly I worded a given post, but I guess that's all water under the bridge now.

I guess this is a long way about saying that I'm sorry your visit went the way it did, and I can definitely sympathize, at least to some extent, with the anger/rage you are feeling. I wish I could do something to make things better.

Karen
karenb
 
Posts: 645
Joined: Mon May 03, 2010 9:41 pm
Location: Las Cruces, NM

Re: New a/Syrinx, idiopathic, congenital, post traumatic???

Postby Julian22 » Mon Mar 26, 2012 2:36 pm

I have a small idiopathic syrinx in my cervical spine. It was found about 3 years ago and has not grown. It was found because I began having neck, upper back, and shoulder pain, and numbness and tinglining in my arms and hands after the birth of my daughter (had an epidural). It was found I had torn both rotator cuffs, which apparently is very strange given that I was in my 30's, 5'3, 116 lbs, and not an athlete. After the repairs and 1 year of PT, I still had the pain and PT and massage person told me it was not normal to have my back muscles locked up despite neumerous treatments and massages 2x/week. After MRI's of my spine, the syrinx was found. After reading about the "cape of pain" and muscle wasting associated with syringomyelia, I thought it would explain the mysterious rotator cuff tears, pain and muscle tension in upper back and neck, and headaches. Neurosurgeon said syrinx isn't causing these things, wants me to go to pain managment. First one wanted to put me on narcotics, second one trigger point injections. I am also told it doesn't explain the left sided fasical twitches, left sided "lightning flashes of pain", cold hands and feet, or dropping things frequently. I am at a loss because I didn't have any of this before I had my daughter, normal delivery, no problems, just a very effective epidural. I thought maybe Ithe epidural or the pushing made it grow. Dr. says no. Anyone else with an idiopathic small cervical syrinx have these symptoms?
Julian22
 
Posts: 3
Joined: Wed Jul 27, 2011 2:06 pm

Re: New a/Syrinx, idiopathic, congenital, post traumatic???

Postby wendi » Mon Apr 02, 2012 1:33 pm

Dear Tom:

You can and sometimes can't say anything negative here about a Dr. You must be careful. Your post did not call him names, it was pretty much honest and straighforward which is why it was probably let thru, or who knows. So long as you aren't being nasty, I believe it is fine.

Anyway, I do wonder what the heck has happened to Dr O? He used to be one of the best and has decided that diet and excercise is the thing for sm/cm. What??!! I know too many people have spent their last dime to go and see him and get that reccomenation from him. If we could all excercise just think how great we would feel? Some of us, it would do more harm then good. With our experts so few and far between, it is sad when one goes gaa gaa like this. I was treated at TCI in NY and the head there got in some hot water and right before he was going to retire, he ended up taking it early. TCI is still a great place, but the hospital watches them like a hawk and they aren't always the best, but I owe Dr B for what I have. At least I don't pee my pants anymore. Hip Hip, hooray! I still have CM and still have symptoms, cuz I will always have cm. He never promised me a cure, only treatment, which is what I got.

I wish you well. Hang in there, is the only advice I can give.

Wendi
ACM 7.5mm B4 TCS 2.4mm post op
TC ,TCS @ TCI on 1/3/08,
chronic sacrolitis
wendi
 
Posts: 3346
Joined: Thu Aug 16, 2007 9:48 am
Location: Whitehall, Pennsylvania


Return to All About Chiari, Syringomyelia, and Related Disorders

Who is online

Users browsing this forum: No registered users and 6 guests

cron