SYRYNX/SHUNT/SHOULDER SURGERY

[mommyt65]

Hello, I'm 37, had a car wreck, had c 3,4,5 to T 1.5 opened with a shunt placed to drain a syringomyelia that formed due to the trauma, and had both shoulders repaired a year later, due to rotator cuff tears (no reason for them tear), now I'm having weird things show up on my mammogram, and at first they dismissed the lumps as benign nodules, but they hurt so they repeated the mammo six mos later, and they are still a problem, I saw my neurologist and showed her the report and she says I might have brachial plexus.neuropathy?? that can turn to cancer ,. but my ob/gyn seems clueless .. my left arm and shoulder have been numb, basically useless and stinging, burning since the shunt surgery in 2000, and shoulder surgery in 2001, and my neurosurgeon has dismissed my complaints of the pain and burning as "part of my disease" (the syringomyelia) .. any ideas on what to do with this next.. I have been topamax, methadone .. and now back on elavil .. but nothing helps the deep tearing burn and the ache .. my arms are useless .. I still manage to go to work each day .. but it's exhausting .. thanks!!! Teresa

[jennyb]

Well, I'm not a doctor so I'd hesitate to advise on the syringomyelia, which is a pretty rare condition from what I've read. If the symptoms you describe started AFTER the surgery I'd be wondering if the doc did any damage in there to the peripheral nerves-but those symptoms are associated with syringomyelia as well as a brachial plexopathy, so it's very hard to tell what's going on. Any symptoms like this after surgery in the cervical spine/shoulder area can indicate injury to the peripheral nerves and it is a risk of any such surgery. If you can, I would try and see a bpi specialist a.s.a.p and try to get an accurate diagnosis-if it's NOT a bpi, or associated with the syringomyelia he (or she) will be able to tell you and hopefully advise you further. Your neurosurgeon is right, these painful symptoms in the arm are part of a bpi or syringomyelia, but it is NOT right that you should just go away and suffer in silence, pain needs to be dealt with. It makes me very angry that so many of these doctors are completely uninterested or badly uninformed about the pain, for many the worst part of such an injury. There is a list of specialists you can get to from the 'home' page by clicking on the medical resources button in the middle of the page. I'm sorry to hear this is happening to you and it must be awful not to know what's going on, especially with other symptoms appearing. Very best of luck, I hope you get help soon and let us know what happens :0) jen nz

[mommyt65]

The neuroSURGEON has been aloof .. she's never even put her hands on me to test me for strength, or sensation in my arms or hands/fingers. The neurologist has been nice .. and brought up the new idea of brachial neuritis/plexus .. all new to me. My ob/gyn's office still has not called me back, neither has the grumpy neurosurgeons office. I think I'll fire her .. last visit I waited 2 hours in her exam room for her to spend less than four minutes with me .. there is no connection with her .. she doesn't want to know me .. and if you don't know the person, you can't help the problem .. thanks for the response .. I do have an appt. tomorrow with the surgeon that operated on both shoulders .. to at least have that looked out .. it's a start. Thanks again!

[admin]

Hi! I have a 28 year old daughter going through a similar problem. She was in a car wreck in March 2003 and since then her back pain has continued to worsen.She had a MRI 4 weeks ago and it showed a syrynx from C6 to T1. The pain doctor she goes to is completely uninterested in her increased pain; she goes to a pain doctor for three medical, longstanding conditions:severe endometriosis, interstitial cystitis of the bladder and osteoarthritis. We did find out last December 2002 that she does have a herniated disk between L4 and L5. Her increased pain did not start right away after the car accident but about one month later. Her boyfriend has three herniated disks thanks to this accident and he never had any back problems before. We are desperately trying to find a doctor to help her We live in Baltimore, MD. We would like to start a support group even if it is over the web. I am a registered nurse and feel helpless to help my daughter without a cooperative doctor and there seems to be none here in the mid-atlantic states/ East coast. I am not rich; I do not even have a 401K because all the money I make goes to Erika's care, medicine, doctor's visits, etc. and I am in my late 50's. She can no longer work. She is having increasing difficulty getting out of bed, standing up from a sitting position, and is falling on a more frequent basis. She wants to return to work as a flight attendant but she is becoming an invalid. I really would like to write a book and/or testify before congress,appear on 20/20 or Dateline and expose these frauds called doctors who took the hippocratic oath, or as I like to call it the hippocritic oath. No pain medication is helping Erika, not even dilaudid or fentanyl. Something is seriously wrong if these strong narcotics do not help. I am told a syrynx is a collection of spinal fluid and not to worry about it as it is no big deal; a doctor actually said those words. From what I remember in nursing school, spinal fluid should always be in the spine, so to speak. It is nothing to mess around with. We have been in touch with two authors of a book on pain called "PAIN: CLINICAL MANUAL",SECOND EDITION. The authors names are Margo McCaffrey and Chris Pasero. Both are wonderful human beings and their book is great. They lecture around the country. Both are out of ideas for Erika. The doctors here have treated her awful. I am so ashamed to be in the healthcare profession and know they are there with me. I hope you find help soon. If you have any ideas for Erika let me know. Take care.


Sincerely,Lynda,a concerned mother

[rbwalton]

I am not sure if anyone on this thread is still watching it, but I recently found this site related to syrynx. I recently had an MRI to rule this out as a cause for me. Not sure what the results will show for me. . . These things take forever.


http://www.asap.org/forum/

[DDC]

I to have syringomyelia t10-t12 has been shunted, hard to tell what is doing what, left arm has not moved since last friday, right arm from clavical down to fingers severe pain & weakness, sever muscel cramps.