Syringomyelia

[Jennifer Balash]

Last summer I had an MRI and it showed a syrinx in my spinal cord from T4 to T12. I have severe pain on a daily basis. Have been seeing a Neuro Surgeon since. I have had 3 MRI's since the first one to keep an eye on any changes in the size of it. Surgury is the last possible option but I have been told that it is not a cure. Basically a shunt is put into the spinal cord to drain the fluid but there are no guarantees that it will help or that the cyst will not fill up again. As the surgury is very dangerous the nuerosurgeon is taking a wait and see approach. Which is good as I don't think at this point I would even entertain the thought of having it done.
I am now seeing a Pain Management doctor. She is basically experimenting with different kinds of medications and injections in my back. I am on Morphine right now, slow release morning and night as well a break through Morphine during the day. Right now I think that I have the pain under control. I would rate it right now as a 5 which I can live with. I know soon the Morphine will no longer be as effective and that is why my Doctor keeps switching things up. I think the scariest part of this is not having a doctor who has any real first hand experience with my condition. I feel as though I was given the diagnosis and then left to figure it out myself. As it is a fairly rare condition I have yet to find a specialist or anyone for that matter that knowes anything about it. I need to know more about this other than just the name of it. I would love to talk to anyone that has the condition. Someone who maybe able to lead me in the right direction to find alternative help or for that matter any help. The thought of for ever being on narcotic drugs just so I can function on a daily basis is a terrifying thought. I am 46 and a mother of 3 and I refuse to just give in and give up on my life as I once knew it. So if anyone can give me advise on this it will be truly appreciated.
Thanks
Jennifer in Ottawa , Canada

[Unregistered]

Dear Jen..I usually dont go on chat stuff but felt you were being left out in the cold on your own. Im an RN honey,and let me be clear that I am NOT giving medical advice.However..have been a nurse for 30 years and specialty is Psych and chemical dependancy {and surgery back in the day at Harvard teaching hospital in Bost****.I also have lived with severe spinal stuff for 15 years, also on meds and it DOES NOT HARM your quality of life if taken as needed.The deal about pain meds becoming ineffective is a MYTH. All the latest pain info by the best specialists in the world in pain medicine now state that there is NO LIMIT to dosage and no damage to a patient on good pain control management even if meds need adjustment now and then.Pain needs to be treated and treated WELL.Now..OK,..you need the Best Doctors. In New York at the ""Hospital for Special Surgery",is a spine surgeon and amazing human being named Dr.Oheneba Boachie -Adjei. Discovery channel did a special on him on 3/8.GO! on line (under just his name} and read his stuff. His personal email is boachie@hss.edu.His phone number is 212-606-1948.This is on the web.He is one of the most gifted spinal guys in the world and who I will see if I ever need help .You will get lots of info on line. His team is at Cornell Medical College too so you will have multiple MD spinal resources as well as neuro guys etc.. The Cornell site is on the web too, {when you get Boachie _Adjei there will be lots of hits on the search page}Also you will be able to call Weill Cornell Medical College for info at 1-877-Cornell .They should be able to help you find the right guy for you.Im using a friends computer so you cant email me easily .but Ill try and check back on you.Running out of space..so Keep the faith..Its very scary at first but you ARE NOT ALONE.God Bless and watch over you ! Deb

[Jennifer Balash]

Hi Deb
Thank you so much for the information that you have provided me with.
I will definitely check it out. I was also very happy to hear that the drugs that I am on are okay. I worry that the drugs would either make me dependent or cause some other health problems. I will let you know what I find out from researching the info that you gave me.
Thank you Deb for taking the time to answer my post, I truly appreciate it.
Jennifer

[fauve]

This is the syringomelia top surgeon...

The Chiari Institute

[Unregistered]

Hi Jennifer

I have sirinx just like You. Have found out about it just few months ago. Went to see a neurologist, but he told me that my sirinx is only 1mm and that it should not cause me, any problems. When I asked him where it came from, he just reply that I was more than likely born with it. Just woundering what did your doctor tell You ? How quick can it spread, what is the reason for it to be there in the first place? etc,.
Please let me know as soon as You read this!!!

Thank You
Monika from London, Ontario

[Unregistered]

Hello, I was diagnosed Hodgkins Lymphoma IIb June 13 2006. I soon after that had received 6 months of ABVD chemotherapy and radiation to the chest and neck. The cancer is gone but now I suffer from severe burning/stabbing pains down my left arm. Mostly in my left shoulder and upper left back. Along with that I have tingling in my fingers and feet plus an occasional stabbing pain along my chest and right arm. Occasionally I would get these strange "ghostly" cool breeze sensations. Once in my neck and a few times in my groin area. To get to the point, I had an MRI of my neck done and it has shown a small syrinx, syringomyelia. And an EMG which shows my Ulnar nerve in both arms are irritated. The EMG doctor said my nerves were far too slow for my age, 29. And I may also suffer from radiation induced Brachial Plexus neuropathy, which will be persued by neurologists next week.

With this kind of history and results from MRI and EMG you would think my PCP would help me. Oh no, they won't help me. I have to see another neurologist in one week and my PCP refuses to refill my vicodin ES, after I told him I needed something a little stronger as it is still hard to work and sleep at night. How can he prescribe me medication for 2.5 months and then drop me cold while other specialists are still trying to figure this out. The pain is unreal. I cant play my piano or guitar like I used to. SOME MEDICAL SYSTEM WE HAVE HERE. screw the little guy. I feel like I was just **** on.

What am I going to do? How am I going to work to feed my wife and kid? How am I going to pay my rent when my boss realizes I can't use my left arm because it hurts so much?

All you guys/galz who are suffering from medical ignorance spawned by the endless waves of junkies pounding on doctors doors, I really feel for you. It seems as if there is no justice for the honest, respectful, law abiding citizen in pain.

God Bless,

Adam
Pittsburgh PA

[razzle]

TCI isnt the only place that has top drs. they are all over the US

[Tweel1987]

I am a 21 year old female and I just found out that I have a syrinx through the whole length of my thoracic spine. I do not have a chairi malformation and they can't find any cause of the syrinx (just a herniated disc at T7). I have had pain in my shoulder and occasional numbness in my hands and face for about 3-4 years now. The pain seems to be getting worse in the last few months. They say they can't do surgery because of the risks. Ive tried a few pain and nerve meds but none have worked and I am currently going to physical therapy. Oh yeah and my dad has a syrinx also, his is alot smaller and is caused by and enlarged section of his spinal cord which was caused by trauma I think..he is in pain all of the time (chronic pain) I just dont want to be in as much pain as he is in when I get older. It sucks. Just wanted someone to talk to about it.

[fauve]

Dr Bolognese at The Chiari Institute (I provided the link above) is a genius at determining the source of the syrinx when there is not an obvious chiari malformation. He has a brilliant video on this site (please watch it!) There is a very supportive group on yahoogroups.com - do a search for syringomyelia - it's called chiari international. I got a lot of support here for my daughter who has a syrinx from c4 to L3 without an obvious chiari malformation. Hers is only 1mm wide and is not causing her pain at this point. If it should ever grow uncomfortable this is the surgeon I would fly her across the country to see. His theory is that if it continues to lengthen or widen after birth there must be a cause. And, once he can determine the cause, he can fix it.

[razzle51]

Come to www.asap.org and get alot of info on SM. Great group of people . You can get lists of qualified Drs . too . see you there.