Hi...I've had a herniated C5 C6 for many years, but due to an injury where i felt my spine being pulled/stretched out, i have now been diagnosed with c5c6 compression. My MRI says the disc "impresses the left aspect of the thecal sac and flattens the cord to the left of midline. Also mentions possibility of calcific density (not sure what that means). Severe c6 nerve impingement was also noted. EMG showed some minor nerve damage in the area.
Since you all are so knowledgeable...
I am not really sure what to do. My neurologist knows I don't want surgery so is not recommending it, but did say i need to get surgical opinions. 3 of the 3 i saw surgeons said I should have surgery. My internist said it's a big surgery , and since my vertebrae is stable, i should exhaust all options first.
What are the risks if I DONT have surgery? Is surgery always recommended for cord compression? Could my condition cause complete paralysis? I am unclear on the facts...
If i do opt for surgery, does anyone know good LI surgeons? I also have appt's with NY surgeons but traveling to NY is hard for my mom. I met with Dr. N. Epstein and Dr. V. Leone on LI and I trust both but was hoping for more references...maybe I am just trying to stall the inevitable but any feedback you all have would be really appreciated! I am very stressed over this!!
erica1976....I too have a compression at C6/C7....have been through all of the tests and the next step is surgery........the risks for not having surgery is you put yourself in danger of paraylasis if you are in an accident ......the situation does not get better on it's own....... READ THROUGH SOME OF THE OTHER THREADS......I am new to this board but once I found out i needed surgery I found this board and read almost all of the threads and responses.....I found this board to be a bounty of information....More information than I got from my DR.....this board also gave me questions to ask the dr........
.I have found from other research - In my opinon it is best to use your own bone if a fusion is needed....the reason being I found that some donor banks DID NOT TEST DONOR BONE FOR HIV1, HIV2, HEP C, AND SYPHILIS.....that is very scary to me.......some people say that using your own bone - the donor site is painful- others have stated it wasn't as bad as they thought.....I for one will have greater peace of mind using my own bone.......I am having surgery by the end of the year or in Janurary.......Hope this is of some help...Do read the other comments on this site .....these people who have posted have alot of information to share.......Good Blessing to you...Keep us informed. ...........quilter58
I agree - you risk paralysis, especially if you are in an accident w/o surgery.
That said, you should find plenty of options. ACDF appears to be relatively routine, so finding a good doc on LI shouldn't be a problem. That said, ACDF or any fusion runs risks of extra pressure above and below the fusion. If your problem is only at one level you are probably a candidate for artificial disk replacement. In my case three levels were involved and given the choice, I had a laminectomy which is done from the rear, clears the compression by cutting into the vertebrae and no fusion.
If you find your balance is off, you are dropping things, urinary or bowel "urgency" as well as tremors, numbness, even walking problems - then have the surgery sooner than later.
Hi Erica1976, I totally understand what you are going through. I'm on LI too! I have severe cord compression C5 and C6 which was found totally by mistake when I went to a neurologist for migraines. Long story short, he made me see a neurosurgeon who said I needed surgery. Dr. Stephen Burstein, in Rockville Centre. Nice guy, very smart, but scared the living crap out of me. Maybe it's because the neurologist didn't think I'd need surgery and the NS emphatically said I needed it and went into complete detail and left out nothing, including every risk, that I totally had an out of body experience!!! Anyway, I found another surgeon in NYC, Dr. Paul Kuflik, who I really, really like. He also suggested surgery, but in a different manner, wants to see me again in Dec with a newer MRI. Just a completely different attitude and calmer approach. He's the director of the Spine Institute in Beth Israel Hospital. Hope this helps. Do you have any pain or tingling or numbness? I have no symptoms but I am so fearful of a bad fall or car accident that I know surgery is the only thing that will help. Take care
Thank you all for responding. I really appreciate it!! The surgeons are all recommending ACDF and I decided, like you Quilter, that I would definitely use my own bone, if I have the surgery. Sunshine, I know that ADR is another option and am guessing that I might be a candidate. They both seem to have their pros and cons and that causes more confusion...
I met with my neurologist today and he is trying to deter me from rushing to surgery, unless the pain is unbearable. I am stuck. He says that the odds of being paralyzed from this condition are lower than I think, and a devastating accident can paralyze anyone. Although i trust him, I left feeling just as confused.
That's funny justmitype, I just made an appt with Stephen Burstein for a surgical opinion. I also have an appt with Dr. Andrew Casden (I believe he works with Dr. Kuflick at the Spine Institute).
I have pain in neck, tingling down left arm, pain in right arm, weakness in both arms/hands, chest pain which i am certain is from the compression, sometimes i actually get muscle cramping in my abdomen which permeates from my back??, difficulty swallowing at times (DOES ANYONE HAVE THIS SYMPTOM??) and, lately, leg cramping/pain. Also, is it possible to have middle back pain from compression in the neck?? My back MRI was negative, but a surgeon said that neck compression could cause muscle spasms in back. Sometimes, it's hard to walk (i don't have gait, but walking puts a lot of pressure on my spine and it feels like my back is going to break).
erica1976......I too have trouble swallowing alot.......I also have tingling in my legs and feet even though the nuero said my legs have nothing to do with my neck.......I found out on this board a couple of other people who had trouble with their legs also and their nuero also told them the same thing.........I have lots of stiffness in between my shoulders.........I don't want to wait too long as I just can't stand my left arm going numb all the time....and the headaches..........Only you know best how long to wait .......only you are living with the problems......
Good blessings to you and the others here......quilter58
I too know what you are going through. I have problems with C-4-C5 C5-C6 C6-C7
At the C5-C6 I have a dick extrusion, compressing the spinal cord, loss of CSF escetera.
I live in Rockland County, suburbs of NYC. My docs all up here said I need surgery. I wanted another option. I did see a doc that deal with Epidurals but they siad it would be too risky. Where they would have to do the Epi it is next to a artery and it is so narrow it could cause me more pain. He also said he wanted me in NYC to see a surgeon.
I saw 3 surgeons. Dr. George DiGiacinto out of St. Lukes, Dr. Robert Holtzman out of Lenox Hill and Dr. Roger Hartl out of New York Presbyterian Wiels Cornel. All three said the same thing...SURGERY or I am taking a risk of Perminenet damage are prarlyis.
I have pain, numbness pins and needles I too have lately been getting chest pains. I an also having some headaches bad lower pain ion my head It is even causing problems for me to drive my car and even turning a knob on the door.
I am scheduled for Nov 29th with Dr. Hartl. I decided on Dr. Hartl because it is NYP which is rated as the 6th best hopital in the US and the 4th best hospital in the US for Neurosurgery. Dr. Hartl is also the surgeon that operated on the firefighter that had top jump off that 50 foot bulding last year. If he could save him he could do the surgery on me. i also realy liked Dr. DiGiacinto and probably would of immediately whent with him, but I am nopt thrilled with St. Lukes.
I was told that 2 or maybe 3 disc will have to be worked on. He is repalcing them with plastic discs and shaving of my own bone. I will also have a plate. I will have to ware a neck brace for at least 6 weeks. I guess I wont be driving for a while. He also mentioned something about this I-Pod looking thing that I will have to wear to help with the fussion. It is experimental.
It is supposed to help with the healing.
I would make a descion as soon as possible. believ me surgery is not the answer I wanted to here either. But if it works..then it is worth it and it is better then the alternative.
Erica, the risks Dr Burstein mentioned were all regarding acdf surgery. Remember, I went to him not thinking I needed surgery and never even heard of this surgery before. When he told me they go through the front of the neck and had to move over your throat, etc, I thought I was going to throw up all over his shoes He then continued to tell me about the swallowing difficulties (which I now know about) and that I might need a speech therapist and yada yada and it was way too much information for my pathetic scared to death brain to handle at the time. I was all alone in his office and freaking out is an understatement. As I said, he's a nice man, and supposidly a wonderful surgeon, but it was just a bad experience for me. Since that time I have learned so much more (99% from this message board). Am I still petrified of having surgery? Yeah, I am, but I will have it when it comes down to it.
My husband is scheduled to have surgery for C5 C6 at Stony Brook Hospital with Dr Robert Galler. He is in a group in Setauket. One of the drs in the group is Raphael Davis who is one of the top doctors according to the New York Magazine top 100 Doctors. Another of the doctors was the dr who saved the little boy from Bellport who was run over by his father. My husband is scheduled for surgery 11/21. I will let you know how it goes.
with the nerve pain and with the EMG saying you had nerve damage I would highly suggest surgery. YOu can only get worse and there's a saying that goes: "time is nerve". The longer you wait the more damage that can happen and the more slow your recovery may be. Good Luck to you and many Blessings.