New here and freaking out a little (ok a LOT)

momoftwo · #1 (**permalink**) 10-04-2007, 02:59 PM

I feel a little bit like I have been living the last coupe of weeks in medical hell. On Monday I went to see a Neurosurgeon here and left in a shell-shocked stuper scheduled for ACDF (not sure if it is 1 or 2 level) surgery next Tuesday. After the crying fits subsided and I started researching what all this is about, I am more confused than ever and don't even know what questions I should be asking my Dr's or what kind of Dr I should be seeing. I called yesterday and canceled my surgery and am currently scheduled to see an Orthopaedic Surgeon on Monday. I also want a seond NS eval.

So here's my story... I am 40 yrs old, never had any major back or neck pain until about last 6 months, when I started gradually getting a stiff neck and some arm pain (shoulders, triceps, elbow and two numb/tingly middle fingers). The pain is constant but by no means dibilitating and really about a 1.5 on the pain scale. I have no other symptoms really. At the end of August I was swimming (something I do often) and during a normal casual stroke I felt searing pain down my neck and arm and almost passed out in the pool). It was really sore for a few days and then ached a little more to about a 2-3 on the pain scale. My regular Dr gave me prednisone ofr two weeks and it was like a magic bullet, no pain at all. She also sent me out for an MRI. When it came back, the radiologists report caused my reg. Dr to send me to the Neuro guy. That brings us to this week, the NS told me I need surgery ASAP and when I asked about waiting or physical therapy, he said "you don't have weeks to make up your mind".

I think I was so stunned and scared I pretty much shook my head and agreed to everything because I was so overwhelmed and scared. When I got home, I freaked out on my poor DH and then all the questions started coming. So I have pretty much spent the last 48 hrs researching and have come to the conclusion that I am being pushed into MAJOR surgery without exploring any other options. I will post the radiologists report below because I don't really understand it, but it certainly doesn't have language in it that indicated to me I was in a serious situation with no time. (Someone please help me understand if there is and I am missing it!!!!!).

In general, I ahve DDD and neck arthritis with one disc herniated pressing on my spinal cord "mildly". He told me no physical therapy because there was compression on my spinal cord and it would do damage. He also said I could be causing permenant nerve damage with possibilities of gradual damage leading to paralysis.

So here is the weird part, I am not limited in any activites, I am not laid out writhing in unGodly pain (Thank God!!!) I have NOT ONE thing I can't do that I normally would. I have some pain, but it is certainly managable with a couple advil. Am I crazy or does my neurosurgeon need to make a payment on his Ferrari? What are all the other alternatives and where can I go find out about pros/cons to each (Cervical Disc replacement, foramenectomies, laminectomies, MAST... etc.?)

Can anyone offer me some advice what to ask? Thank you sincerely if you are still reading this!

Here's the report:
FINDINGS: At C5-6, there is a dorsal disc osteophye complex which causes at least modest stenosis. There is some increased T2 signal within the right lateral aspect of the cervical cord which may be some edema. The degenerative complex extends towards the origin of the right neural foramen. This could be causing a right C6 radiculopathy. Uncinate degeneration is found bilaterally which is mild. The canal measures approximately 7.5mm in maximal AP dimension.

At C6-7, a similar degenerative disc/osteophyte complex dorsally extends into the left neural foramen. Modest canal stenosis is found with the canal measuring approximately 8mm in AP dimension at it's narrowest. Modest left-sided foraminal stenosis is also aoccurring. Correlate for left C7 radiculopathy.

The remainder of the cervical posterior disc margins are maintained. There is no edema signal within the marrow of the cervical vertebral bodies. There is a hemangioma within the left side of the C7 vertebral body. The craneocervical junction is unremarkable. The perivertebral soft tissues are unremarkable.

IMPRESSION: Degenerative changes at C5-6 and C6-7 as discussed with at leadt modest canal stenosis at these levels. There is suspicion for soem edmea in the right side of the cervical cord at C5-6. There is some narrowing of the origin of the right neural foramen at C5-6 and of the left C6-7 foramen. Correlation for radiculopathy in the right C6 and left C7 nerve root distributions is suggested."

mmglobal · #2 (**permalink**) 10-04-2007, 04:32 PM

Dear Mom...

It's tough to discern if you face a quality of life decision... (am I bad enough to do the surgery), or if you really have to pull the trigger now to reduce the risk of permanent cord damage.

I've had several clients who go to one neurosurgeon and get the "you have to do multi-level fusion ASAP or you'll be paralyzed if you get in a fender bender" - then go to another neuro and get, "whatever you do, don't do a multi-level fusion!"

It's a minefield out there. When reading your report, I'm focusing on the adjectives as much as the pathology. Most of us who live to be 40 have issues in our spines. Mild this and modest that is way different than a bunch of moderate to severe's. You will have a difficult decision process to go through. I'm glad that you discovered that you must take responsibility to learn what you need in order to make the appropriate choice.

Do your homework, make informed decision.

All the best. I hope that soon, you are an ex-spine-patient.

Mark

fireyangel76 · #3 (**permalink**) 10-04-2007, 08:51 PM

Hi there MOM...hope I can just call ya Mom for short!
I am no expert on spines and I am especially ignorant regarding cervical spines.
I also feel very confused after reading your post and MRI report. My point being...if you don't understand what was told to you about your condition and all your options and what the consequenses(SP) of doing nothing verses something..YOU HAVE NOT RECEIVED INFORMED CONSENT!
I would run for a second opinion and search out someone who has time to explain the risks, pros and cons of all your options!
Good luck! Be assertive! Be informed!

Maria · #4 (**permalink**) 10-05-2007, 01:59 PM

I think the freaking out period is normal given what the surgeon told you.

In reading the Impression part of your report I would want to get a 2nd and 3rd opinion most likely before having surgery.. this is just me. This much I would do quickly.

Hopefully you can get a 2nd opinion ASAP with a high calibur surgical consultation.

Hucky :) · #5 (**permalink**) 10-07-2007, 12:08 AM

When you go to see the Ortho on Monday, if you can, take your husband or friend. If that's not possible take a tape recorder. Sometimes the info coming at you is overwhelming and you won't take it all in.

Prior to going. Write a list of any questions you may have. Unfortunately, some people go blank when they're at the doctors and forget to ask questions.

It certainly is a good idea to get a second and third opinion, but also, do your research. I was advised by four surgeons to have discectomy and fusion/ADR, but 3 years later, my radicular pain and parathesia has resolved from a 10 + pain to a handleable 3, without medication. I have learned to moderate my lifestyle and hope to avoid surgery altogether. It was my NS who advised waiting as long as possible before submitting to surgery.

Hucky

KL Aguilar · #6 (**permalink**) 10-07-2007, 04:24 AM

In my humble opinion, you should continue to research and not rush immediately into surgery. However, you have two troublesome findings on the MRI: narrow spinal canal space of 7.5 to 8 (stenosis) and the osteophytes. Stenosis can be dangerous if one has a serious fall or car accident or the like. Osteophytes are likely to grow and get worse over time.

Due to the similar problems at C5/6 and 6/7, the surgeon was probably recommending a two-level ACDF. There may be other surgeries that could deal with your problem: ADR (artificial disc replacement), laminectomy, foraminotomy, etc. All of these surgeries have advantages and disadvantages.

I am in a similar, although far worse, situation. I have seen or had my films and records seen by 9 surgeons and have had the following recommendations: 4-level ACDF (2 surgeons), 2-level ACDF (1 surgeon), 2 level ADR (1 surgeon), 2-3 level ADR (3 surgeons), 2-level foraminotomy (1 surgeon), and 2-level ACD without fusion. The two surgeons who recommended a 4-level ACDF were not top-notch surgeons; one was a neurosurgeon, but not even a spine specialist. All the other were top-notch spine specialists.

You need a second, and third, opinion from a top-notch surgeon who SPECIALIZES IN SPINES. Where are you located and what are your financial options (i.e., what kind of insurance do you have)?

momoftwo · #7 (**permalink**) 10-07-2007, 02:28 PM

Thank you everyone for your support and advice. I am actively seeking second third and will probably get a fourth opinion.

KL- you asked where I was, I live in Austin Tx. I am checking out Drs in Houston and Dallas too, since it isn't very far away. I have Aetna Choice PPO for insurance, but based on other experiences with them with our whole family, I don't hold out much hope they will pay for anything BUT a fusion from what I read.

Mom

fortitudine · #8 (**permalink**) 10-11-2007, 11:58 PM

Hi Mom,
I have a similar story to KLAguilar. My MRI's read 'moderate' and 'severe' stenosis at c3/4/5. I was first diagnosed 3 1/2 years ago. Freaked out is right. NS here wanted to do a 3-level surgery. Others offered different solutions. Told I could be paralysed. Had no pain. Have since been on cycling trips and fallen on ice and am still okay. However starting to have a bit of pain.. I had planned to have surgery but family stuff got in the way. Will get back to a plan soon.

For sure get another couple of consults. I don't think you need to panic. Take your time, so that you can be confident about your decision. There used to be a poster on BrainTalk called Blueberry who had a similar situation, who had, at the last time I connected with her a year or so ago, been seven years without surgery.

BTW, swimming is great exercise.

KL Aguilar · #9 (**permalink**) 10-12-2007, 04:03 AM

The reason I asked your location is perhaps people on this board could recommend surgeons near you.

Fortitudine, I have been a cervie for 12 years, and have had only minimally invasive surgery in January 2000. However, I am getting progressively worse and will have to have something major in the next year or so, but what procedure and which surgeon is still undetermined.