Hello from Chicago! (Issue with C5/C6 & C6/C7)

[densmi]

Hi - I am a 30 yr old man living in Chicago. I feel as though I'm in an episode of House without House being available to see me. My list of issues: inverted c-spine, disc herniations in my c5-c6/c6-c7 area; circumferential osteophyte formation from c-4 through c-7 resulting in seizing muscles across upper traps/levator scapulae (base of neck to scapula)/and recently reaching to the serratus anterior; and ulnar nerve compression resulting in numbness and tingling in right arm, loss of feeling in "center" of biceps, pointer finger and thumb.

I injured my neck 7 years ago, and as I was a dancer at that time and very physically active, I refused to consider surgery/fusion until I deemed the pain was unbearable. In December, I had surgery for a shoulder tear from competitive volleyball, and that sent me on a downward spiral with my neck. I am now looking into surgery, but every neurosurgeon (I've met with 4 now) has told me there is no such thing as an anterior cervical foraminotomy, only posterior, and that my only option is the ACDF or a disc replacement. I then forward them the articles from the medical journals I've read detailing the studies that have been conducted on the procedure since 1996, and they have no one to forward me to or recommend.

I've found one doctor who performs the surgery, at UCLA Spinal Center. He accepts no insurance, and only takes cash payments.

I'm leaning towards this procedure because if it doesn't work - it does not impede the spinal structure thereby inhibiting an ACDF in the future. If it DOES work, I have continued ROM in my spine. The procedure itself opens up the nerve space that is being compressed and they remove osteophytes that may impede the nerve space. I just do not want to jump to the ACDF. On a healthy spine, an ACDF procedure has a 30% chance of adjacent fusions 10yrs down the road. All the disc in my cervical spine show deterioration due to the 7 yrs of restricted mobility in my neck, which means my chance of adjacent fusions increases. Essentially, by 50 I could end up with my full cervical spine fused.

Anyone have any leads or stories about their experience with Anterior Cervical Foraminotomy?

[KBear]

I'm not much help on what you are looking for or cervical issues for that matter. However, I would suggest contacting Texas Back Institute in Plano (Dr. Blumenthal, Dr. Zigler), Dr. Bitan in NYC, Dr. Pimenta in Brazil, Stenum in Germany and/or Dr. B in Germany. Many of these places will review your MRI's and medical history and give you their recommendation for no fee, others charge a small fee; but worth it to get the right treatment. You've taken the first step and become an informed spine patient and that makes a huge difference. Good Luck in your search and let us know if there is anything we can help you with.
Kathy

[Katie]

I echo Kathy's advice. I have found that most surgeons in an area tend to stick together in their treatment plans; I was ridiculed and declined many times by local surgeons, no matter their reputation, but when I went farther afield, I got the answers I needed.

If you need any help in finding the contact information on most of those above, please just ask. Either I or most others here will be able to help you.

[mark kim]

In Chicago, they have one doctor you might want to check into. His name is Richard G Fessler and he is one of the pioneers in the field of minimally invasive surgery. He is at northwestern university. I am actually flying from NY in September to seek a consultation with him.

[densmi]

First off - Kathy, thank you for the names of the surgeons in your post. I contacted Dr. Bitan and he truly was amazing. I filled out his online survey and that evening he himself called me. We talked about my condition and he spent approximately 20 mins discussing generic options (because he couldn't be specific to my condition without seeing my x-ray). He was a pleasure, and had I not found the doctor I found in Chicago the week after speaking with Dr. Bitan, I would have been flying to NYC to get the procedure done by him.

Mark, while you are there at Northwestern Spine center (if you are going to the 675 N St Clair offices on the 20th floor), see if you can also arrange a second opinion with Dr. Cybulski. Since you are in Chicago, you may as well check him out. I initially spoke on the phone with Dr. Kessler's attending, and she did not seem AS informed as I would have preferred her to be. This is saying NOTHING about Dr. Kessler, but our conversation led her to asking me if I was in the medical field because I was debating her over-the-phone diagnosis of arthritis in my spine and how I needed a myelogram - even though I had told her earlier in the conversation I was not suffering from spinal stenosis, which is what the myelogram is primarily used for (to diagnose myelopathy from spinal stenosis). Again, I am saying nothing about Kessler himself, his practice, or his abilities with spinal surgery, he has operated on a famous football player in fact. I am just saying after that convo with his attending, I did not wish to seek further surgical help from him.

UPDATE:
I finally found a doctor and had my procedure this past August 12th. His name is Dr. Cybulski and he's at Northwestern, and he has amazing bed-side presence and seems to have done a good job for the most part. I did not end up having the anterior cervical foraminotomy because I learned from two different doctors that the procedure has above normal risks associated with it - the same risks as an ACDF with moving the esophageal track, trachea, etc. - but it didn't carry the same rewards post-op as the comparison of an ACDF vs Posterior Fusion approach. I ended up having Posterior Cervical Foraminotomy and Microdiscectomy of the herniated disc matter and shaving off of osteophytes (aka: bone spurs) that formed in the vertrebral space. There was no fusion.

I am 12 days out of surgery and I am up against one major complication, and one minor complication. The minor complication is really nothing - but I had no preparation for it, so it was a bit shocking. Because the approach was posterior, they had to stabilize my head using screws into my skull. they placed a screw in the left side of my head, right side, and right between my eyes on the bridge of my nose. During the surgery, the left side screw didn't fully connect and enter my skull, so during the procedure my head slipped out of the traction and lacerated my scalp ~2". So I woke up to stables in my scalp.

The more severe complication is something the doctor is saying is most probably related to acute swelling from the amount of trauma that occurred in the space during surgery. I am unable to utilize my left arm in the same capacity as I was prior to surgery (the compression and surgery was on the left side). My shoulder and scapula remain pretty static when I raise my left arm to the front of me, so I can only make it to a 90º currently - almost even with my shoulder line. I would functionally say I'm at 60-70% usage of my left arm post-op now in comparison to pre-op. Immediately following surgery, I was about 30%.

REVIEW OF SURGERY:
I would say I went into the surgery expecting a less severe surgery than I encountered. Surgery itself was 1.5 hours. I was in surgical recovery for 5.5 hours (long due to the wait to have an open bed for my observation stay). I stayed over night for approximately 22 hours and walked out of the hospital the next afternoon to go home. During Recovery, I could have nothing to eat or drink - they made an exception as the time passed and I continued asking for water. They gave me ice to chew on. I ate three full cups. When I got up into my room, the nurses put me on a liquid diet until I passed gas or a bowel movement - so I basically inhaled 4 jello cups and 6 italian ice cups, as well as water, apple juice and cranberry juice. I finally was able to eat my first substantial meal at 10p - I had chicken noodle soup with crackers.

Now before I say this, I want to preface by saying most days, I am an intelligent guy. Because hind-sight, I see that I was dumb. :-P

I was told that the foraminotomy surgery was a great option because you could be up and moving around 2 hours after surgery. For the most part this was true, however, I didn't go into it with the understanding that while you were up and walking around, you were still in BIG amounts of pain. Just putting that out there. You are moving around, but you really would rather be pushing your pain button attached to the dilaudid (a hydromorphone drug). So anyway, they had me do OT before I left to show me how to dress, shower, walk up stairs, sit in a car, get in and out of bed without putting stress on the sutures, etc.

Tomorrow I get my stitches out of my incision and the staples removed from my head. I'm hoping the doctor says my arm is improving at a fast enough pace that it truly is just acute swelling on the nerve that is causing a more severe compression than the bone spur. He did say that I had a pretty severe and big bone spur compressing on the nerve that he was able to remove. And he told me the surgery, aside from the head slip, went exactly as planned. As of today, my ROM is much better than I expected. I have better left to right rotation, and up to down rotation than I do tilting side to side. L to R is approximately 50-60º from one side to the other, Up to Down is approximately 45º. Tilting is under 45º.

Anyway, that's my update. As more develops, I'll keep this thread updated as needed. Feel free to ask questions.

:thumpup:

[KBear]

I'm glad you made it to the other side. I wouldn't call it dumb that you didn't realize how serious the surgery was. I had no idea what I was getting into either. I knew it was serious, but I underestimated how bad I was going to hurt afterward. I'm glad I didn't know, or I might have chickened out! Improvement comes slow after surgery, but it comes. I was in more pain for weeks after surgery, just from the trauma during surgery. That eventually goes away and one day you will wake up and realize that you have made huge improvements.
Good Luck,
Kathy

[Justin]

Congrats on making it to the other side!

[Cindylou]

Congratulations on being on the other side of surgery, densmi from Chicago! When I woke up after my 3 level lumbar ADR surgery I wanted someone to shove me off a cliff, I was in so much pain. My second most painful surgery was a shoulder rotator cuff repair. Having 2 of my 3 children with natural childbirth was third in line for pain. It was always first, until my back surgery, so no......there are no dumb questions. I hope you will post from time to time about your progress, and I hope you see marked improvements as you go. Regards, Cindylou

(PS: I hail from Minnesota, but we moved to the suburbs of Chicago as a kid and I finished high school there.....I have my high school reunion in October so I will be back in your area. I love Chicago!)