Neurosurgeon report in, I am fuming!

susiestar

Roll With It
One of the docs I saw last week was an ortho spine doctor, he only does spines. The other was a neurosurgeon. I specifically asked for a copy of the entire report from the neuro, as I strongly disliked his attitude, and because what he was telling me didn't make sense. My mom was with me, and neither of us would let him treat our CAT, much less one of us.

According to him, my loss of feeling/control in my fingers is "normal". He also states in his report that I don't need treatment for the herniated disc and bone spurs inside the cavity where the spinal cord runs because I am already in pain. Basically, why bother treating me because I am in pain.

I have 50% range of motion. I guess I don't deserve more because I have fibro and what is tentatively diagnosis'd as a form of arthritis. Oh - and I am fat, so no treatment is needed. A large part of my weight is due to the pain of strenuous exercise. If I can get to a WARM pool I can do a lot more exercise, but they just filled in the only therapeautically warm pool in my town. 75 miles is too far to drive to be in a warm enough pool for daily exercise. Cool, much less cold, anything causes muscle spasms so bad I need hospitalization, and the spasms can last for 2 weeks or more! I have been on medications for over 25 years which have weight gain as a side effect.

I do have fork to mouth disease. No arguments here. But I try very hard to keep my portions controlled, and to do what exercise I can. My rheumy actually GAVE me the filled out form for a handicapped sticker, because the walking is so bad some days it is dangerous. (Sweetie that my doctor is he even stapled a $1 bill to it, that is the fee here, and he doesn't do that much). He was upset that I didn't ask for a sticker. Even with it, I walk when I can.

I had one disc removed and the vertebrae fused 10 years ago. I was projected to reach 70 % of my range of motion, and was told to be happy with that. I reached over 90%! My doctor actually wrote up what I did for future patients. Of course, he died a few years later. Otherwise, I would be flying to another state for the surgery. "Seance Surgery" is just not covered under my insurance, LOL!!! Even at Halloween!!

I am jsut so mad that my ins co has already paid this jerk. He caused lots of pain during hte exam. He also picked up on a lot less of what even my regular doctor picked up on. I just hate that this report will be in my file.

I found the ortho spine doctor on my own - referrals from multiple people, all to the doctor I saw. I liked him.

But the neuro set me up for an EMG. I don't think I will have it, because if I test atypically (which I did before, and do on many tests) my ins co may not cover it.

Is it worth being stuck with needles over and over to see what my muscles do, just to give results that will very likely be useless? (I had 2 of these prior to my neck surgery 10 yrs ago. NONE of them showed what they typically would, but when the surgeon got in to do the removal and fusion, I had much much much more damage than he expected, and so I odn't trust the test much.

Any advice? I know it is my decision, solely, but I would like to hear advice from others.

Thanks,

Susie
 

Lothlorien

Active Member
Seek out a second opinion. You said you were given referrals? Don't worry about that report. It's one opinion.

Why would he say that the loss of feeling in your fingers was normal? Do you have diabetes?

If you have spurring inside the spinal canal, of course that is painful...and he thinks this is nothing to sneeze at?

That doctor is a cad. Stick with the ortho guy and seek out the other physician that you were givena referral for.
 

Marguerite

Active Member
From my experience, neurosurgeons as a class tend to be arrogant and unfeeling towards the patient. The more a doctor specialises, the narrower his field of vision and the less he seems to know about anything else. The British comedian Kenneth Williams said it brilliantly - "Specialists these days are getting better and better at less and less. Soon they will be simply SUPERB - at NOTHING!"

The more they specialise, the fewer there are. Think of the number of GPs. Then think of the number of neurologists. Then think of the number of neurologists who then specialise in surgery. Then think of the number of neurosurgeons who specialise further, into the brain, or the peripheral nervous system, or into research, or into the spine. Very few. And by the time someone has done THAT much study and work, their connection back to the patient can be tenuous. They can also get an inflated sense of self-importance. You also have far fewer options to go elsewhere, and they know it. They can get away with being ratbags because if YOU walk out the door, there will be ten more like you, waiting for his expertise.

There are exceptions - when easy child was very young and we thought she may have inherited my genetic kidney defect, an IVP was ordered and we were referred to maybe the ultimate in specialists - a paediatric uroradiologist. In other words, he specialised in x-raying the urogenital systems of children. And he was the gentlest, kindest man... it could have been so traumatic for a 3 year old, but instead she sailed through it, largely because of this great doctor.

But in my experience, this is unusual.

That said, even an utter ratbag of a neurosurgeon should know his stuff. Of course, whether he deigns to say anything to YOU about what he is thinking, is another matter entirely.

It's quite likely that he has good medical reasons for refusing the surgery. "According to him, the loss of feeling/control in my fingers is normal."
He may have meant, "Yes, this is what you would expect with the degree of disc narrowing." You have to recognise that these blokes think of the patient as a specimen of curiosity, rarely as an individual.

He led you to believe that he doesn't think treatment of the herniated disc and spurs is not necessary because you're already in pain - it's also likely that the amount of pain you are in (and may have been in for some time) could indicate that trying to fix it surgically would not work because too much damage has occurred, it may be now irreversible. I remember a neurosurgeon seeing me back when easy child 2/difficult child 2 was a baby (she was in hospital with me because I was still breastfeeding her; the neurologist thought this was bizarre, since she was already three months old and surely should have been on formula by then?) My neurosurgeon saw me for about two minutes (he'd already looked at all the test results) and told me that to attempt to fix anything he would have to operate on my cervical spine, it would be risky and there would be no guarantee of improvement; that, coupled with the risk of making things worse, made me choose to not have anything done.

The weight - it wouldn't help his attitudes, but it's not just 'fat-ism', it's also the surgical risks. Especially operating in the neck, the amount of fat can really obscure the operating field. Back when I was a working, we had to occasionally operate on cats and often, if we got a large one (not necessarily fat) we had A LOT of trouble trying to locate and isolate the various structures in the neck that were part of the task. Fatty overgrowth, thyroid overgrowth - all made it much harder, and a great deal riskier for the cat. A lot of vets would have refused to do the job. I know that with MY current weight, any surgery on my neck would be much trickier for the surgeon, and riskier for me.

This bloke may have been a ratbag (not allowed to use the other, more appropriate Aussie term here) but he may also have been good at his job. Also, he may also have been protecting his statistics - a lot of surgeons do this. If they take on risky surgeries, or surgeries where the outcome may not be that great, it shows up in their stats and that affects their reputation. If he goes to the trouble of operating on you and doesn't get much improvement, or maybe no improvement, then it makes HIM look bad for future patients and future employers.

So consider that he may have (in his own charming, ham-fisted way) been right. But I would go get another opinion.

You said you had successful surgery a few years ago - first, that doesn't have much to do with THIS proposed surgery. It was a different disc with different problems. But even though your previous surgeon is no longer available, find out who he TAUGHT. Ask your GP to track it down for you. If you could find a former student, you might get similar standard surgery. No guarantees, though. But at least it's a different direction to chase.

There is little point going ahead with ANYTHING if you don't trust the doctor. I've seen some good doctors in my time; some of them had appalling bedside manner. difficult child 3 was delivered by a bloke with charming bedside manner and a brilliant reputation. But he did me a grave disservice. My next OBGYN was just as bad - lousy bedside manner and failed to inform me of surgical outcomes. And the one after that - dangerously incompetent. But my current bloke - a darling. And one of the most competent in Sydney. I just wish I'd found him before I had difficult child 3.

Whoever you see, they will probably want another EMG. You need to have them done every so often just to chart any changes in your nerve conduction. It's a pain in the everywhere, I do know, because I've had a few over the years myself. I'm trying to count - I've had at least five, I think more. Over 21 years. While I wouldn't rush into one (I'd make sure that any other testing associated, such as VERs, would be done at the same time - minimises trauma) I would accept the requirement, especially if another specialist says you should.

So if you want, get another opinion (this sort of surgery shouldn't be contemplated lightly, anyway) but don't expect a good bedside manner. What you NEED is a competent surgeon.

Good luck. I hope you can get the information you need.

Marg
 

Hound dog

Nana's are Beautiful
Susie

Get a second opinion. Obviously this guy has his nose stuck so far up his own behind that he can't see beyond his own ego well enough to discover his own stupidity. :grrr:

I wonder if this jerk is related to my last nephrologist?

You have every reason to be fuming.

(((hugs)))
 

susiestar

Roll With It
I got 2 opinions last week. And a lovely 2 nights in a hotel to rest between them!!

The ortho doctor was very caring and logical. He made sense when talking about the mechanics of what is going on. So I will follow his recommendations and do PT and the epidural steroid injection. If that does not work, we will schedule surgery.

I will problem have to have the surgery. On the MRI even I can see the bone spurs sticking out into the canal for hte spinal cord.
h
I am working on the weight. I have always done a lot of stretching on a daily basis. At 15 I was told (mistakenly( that my spine would grow together and so would other joints, so stretching was crucial. I thought for several years that if I didn't stretch a lot I would lose mobility in ALL my joints. LOTS of fun to think about as a teen. By the time we got a correct diagnosis, the stretching was part of my life.

After my 1st fusion they told me I would have about 75% range in my neck, and would maybe get 70% use of my right hand back. I did enough of the PT, on a consistent basis, to get closer to 90% back on both.

My anger was the assumption that I didn't deserve treatment because I am already in pain, am fat, and am female.

Still angry, but have decided how to proceed.

Susie
 
Susiestar,

I am so glad that you went for the additonal opinions and that you are giving PT and epidural injections a go. I hesitate to speak up about about spinal surgery because I work with individuals who have failed backs and many of them have had 2, 3, 4 , 5 surgeries. If you speak with them, you will find that most of them wish them had never had the first surgery, much less the others. I work in a small medical circle and we all know the names of the docs who generally have the good surgical outcomes and the names of the docs who don't have such good ones. For many, many reasons I keep silent when my clients talk about their docs. I have one client who was told by the doctor that I sent her to that she should find an attorney and file a malpractice suite against the surgeon who last operated on her - no joke. That is the rarest of the rare, to find a doctor that will break the mutual protection code and tell a patient what has really happened to them!

Do the personalities and bedside manners of the docs match up with their outcomes? Absolutely not! The very best, and I mean the very best orthopedic surgeon in our area is the most cantankerous man you will ever meet! I refer many people to him, but I always warn them that he is a real piece of work. Usually if they are prepared they can handle his crustiness. As surgery phobic as I am, I would never hesitate to be treated by him - or to send any of my friends or relatives to him. His outcomes are simply wonderful. And, most importantly, if he thinks he can't improve a situation he honestly says so. difficult child's plastic surgeon is the same way. Our orthopedist sent us to him saying "he works miracles". And he has for difficult child. Personality and bed side manner? Absolutely none, as a matter of fact- I don't think I would be wrong if I said that he was once somebody's difficult child. In fact, after one surgery, he and difficult child got in a shouting match in the hospital... But wherever we take difficult child for medical appointments regarding his foot, the medical folks gather around and say "Wow, what wonderful work!" I'll take that over personality any day.

Hang in there. I'm pulling for the PT and epidural injections! It sounds like you are a wonderful rehab patient from your previous outcomes!
 

TerryJ2

Well-Known Member
Glad you're making some progress. That first appointment definitely sounded like a washout.

I have bone spurs in my neck, too, and they can cause tingling in my fingers, to the point where I have lost feeling and dropped a hot teacup. (While I couldn't grasp it with-my hand, I could certainly feel it when it hit my leg! LOL!)
I think what the neuro meant by "normal" is that if you have bone spurs, it is normal to cause pain and tingling down your arm. Dumb explanation on his part when you have to be a mindreader to figure out what he means!

I get chiro adjustments to my neck nearly every wk, to keep the joints moving, and I did acupuncture for the tingling down my arm. I was supposed to have 8 treatments but I think it cleared up in 4. It was like a miracle!

I am guessing that your 50% range of motion is in your neck?
From which part of your spine was the disc removed?
You will always have a tightening in the sections above and below that fusion, because you've lost some of your range of motion from loss of that disc.

You don't need or want to do strenous exercise. You want to do slow stretches. You can also walk ... just start with-the yard, then go around the block, etc.

How far is the herniation? Is it sticking way out on the xray? Or is it just like a little shadow on the film?
If it's small, you may be able to go to phys. therapy, and that will be covered by ins. Why didn't the neuro recommend it? And in fact, the 2nd opinion guy can recommend chiro and/or phys therapy while you make up your mind about the surgery.

You truly have to be your own advocate.



 

susiestar

Roll With It
Thanks all!

I do try to be a good rehab patient. I know that it is teh stretching and walking right now that I need. At this point, they have recommended that I not walk a whole lot. The bulge is BIG, and so are the spurs.

My mom's chiro is amazing. I had him evaluate the MRI. I got his report telling me to go get surgery. He NEVER NEVER NEVER advises that. He says it is way too far gone for chiro treatment. And if happened very quickly, as far as symptoms. The bones spurs were not quick, but the disc itself is degenerating, as is much of the other cartilage in my body.

I will work on the PT and epidural, and then see what we see.

I do know that some great surgeons are hideous people, but this guy was both awful in outcome and in personality. He also did not know much about sanitary practices. He pulled a safety pin out of his pants pocket and wanted to prick me with it to test for numbness. I DON'T THINK SO!! NOt our of your front pants pocket to stick into my skin, not even a little bit.

And his hands had dirty fingernails. And felt grimy when he grabbed my hand.

I am just very picky and spoiled about using germy things.

Thanks for hte support ladies!!

Susie
 

TerryJ2

Well-Known Member
Ew, Susie, good call on noticing he had dirty fingernails. He probably works on antique cars in his spare time, but still, you're not a car!
I'll ask my husband about the DJD and what you can do about it.
 
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