Mistrust of doctors

I have stated many times that I don't trust doctors. Once again I made the mistake of not following my own gut instinct.

Four years ago, I had spinal stenosis. I knew I had herniated and ruptured disks about 9 years ago, but was told they would heal and didn't need follow-up. A few years later, my neck got worse and worse and eventually, I had electric shocks running down one arm. I knew I had stenosis at that point and called my GP to get an MRI. It confirmed stenosis and I was referred to a Neurosurgeon. He said that I had a bone spur half-way through my spinal cord and a fall could cause paralysis, so surgery was necessary. I had the surgery which involved replacing a disk with a cadaver disk and the use of titanium screws. All in all, not a bad surgery and I felt so much better after it was done.

About two years ago, my neck began to feel stiff and painful again, but since I didn't have the shocks, I blew it off. Last May, I began to have very weak legs and weak arms, and my hands were losing strength. I fell a couple times. My fingers began to overlap when I gripped things and I was losing dexterity. I went to see my Neurologist since I also have small fiber neuropathy. He did an EMG and said that other than mild carpal tunnel, he couldn't find anything wrong. He did not even do a physical exam but referred me to an Orthopedic Hand Surgeon, stating that the problem was related to my connective tissue disorder. I asked him if the problem could be my neck and he said no.

I saw the Orthopedist and he said the EMG results didn't match up with the physical symptoms. He said that it was definitely nerve related and sent me to a Physiatrist. I had another EMG and he also said that he didn't know what was going on. Again I asked if it could be another stenosis and he said no. He sent me back to my Neurologist.

I asked the Neurologist again if it could be neck related. No. He said it was probably damage from small fiber neuropathy but that can't be proven. I asked if I could get an MRI and he said it wasn't necessary. So off I go with no answers.

Things kept getting worse, so I called my GP and asked her to please give me a script for an MRI. She got on the phone with my Neurosurgeon from the last surgery and got me an appointment for the same week. I went today. He strongly feels that I have stenosis again only worse this time. The damage might be permanent. I have to get the MRI and will see him again in two weeks to get the results. I knew it! I had the classic symptoms and life has been hell living like this. Doctors basically just blew me off with serious symptoms like this. I should have pushed harder. Lesson: If you know something is wrong, keep pushing!

I think it is so sad that we HAVE to be our own advocate. You would think a Doctor would be inclined to figure it out instead of always passing it on to another.

I have a heavy heart for you Sandi, when you know your own body and Doctors just blow it off, one would start to question one's self.

I do pray that there is something that a skilled Doctor can do to relieve some of your pain.

Cindy Ann

P.S. I am boycotting Doctors for now - need a break if you know what I mean

I should have just called the Neurosurgeon on my own. I'm an idiot.

CindyAnn, you have also been screwed (for lack of a better word) by a doctor. Big time. I know you understand this!

Sorry to hear what you're going through, Sandi. It sounds quite familiar. I had to learn to advocate for myself while struggling with what was finally diagnosed as Ehlers-Danlos syndrome. I'm also helping my mother get prompt and appropriate care, which is far more important for her since she has pancreatic cancer. For instance, my mother was all but discharged from an ER for a bleeding ulcer and a hemoglobin of 5, with the ER physician telling her she was fine and shouldn't worry about her bleeding or other symptoms. Advocacy got her admitted and properly treated.

Perhaps even worse is that I hear stories about these kinds of issues from physicians. Even their deep knowledge of the healthcare system and art/science of medicine doesn't seem to help much, at least from what I hear.

I hope your MRI shows something that is readily treatable.

I'm expecting the MRI to show spine compression like it did the last time. The last surgery went well and there were no lasting affects. The problem this time is that it's affected my arms, legs and hands. I've lost a lot of muscle from nerve damage and I'm not sure if I can get it back. It affects everything I do....going up stairs, cutting vegetables, showering etc.... If he'd diagnosed it 8 months go when I first went to him, I might have a better chance. I mentioned it, he blew me off. I'm not going back to this Neurologist.

The problem with this surgery, which I knew the last time, is once you have it, other disks can begin to collapse. How many times can they do this?

Believe me, I am always excited over any problem that can be fixed, but I'm not sure the damage can be reversed.

I've been through something similar due to cervical radiculopathy. I lost some muscle in my left arm in particular and hope to regain it but my last physical therapist said he wasn't sure I'd be able to.

I've not yet had the surgery I was recommended for, in part because of what you said about the long-term effects on discs (also, my connective tissue disorder means my chance of a good outcome is very low). The surgeon and physical therapists all told me I'd likely have to repeat the surgery within 10 years of the first one, so I asked what you did. No one gave me a clear answer.

I hope you can find a nonsurgical intervention, and a good physical therapist to work with you on rebuilding the lost muscle mass. And I'd find a new neurologist, too.

The last time, I had a bone spur half-way through my spinal cord. A fall or car accident could cause paralysis. I'm pretty sure it's the same this time around; the symptoms are even worse. I had myelopathy the last time and he thinks I have it again. When it gets to that point, there isn't much choice. Since I've already fallen four times in the past few months, I don't know if I should risk not having the surgery. I can't lift my head up all the way and my hands are getting atrophied, not to mention the nerve shocks. I'm even getting tingling and numbness in my chin. Today, I started with constant nerve pain in my leg. Every day seems to get worse.

I have Lupus and came through the surgery great the last time. I have more reservations this time since my risks are higher (long list). It will eventually lead to loss of bladder and bowel control and probably complete disability with loss of use of limbs if I don't get it done.

After the surgery the last time, I was amazed at the difference in how I felt having that decompressed. It's affecting me cognitively this time too, since it can restrict blood flow and oxygen to the brain.

Keep an eye on it. You don't want it to progress to a serious situation.

My situation's not nearly as bad or complicated. I have osteophyes and cysts that are impinging on the nerves exiting the cord but not the cord itself. It sounds like you have to take the risk of having the surgery.

Lupus is quite different from Ehlers-Danlos, and as far as I can tell, much more challenging. I moved last year and found a new primary care physician who is turning out to be very useful. So I just keep going back for routine monitoring and hope to avoid surgery. I track my health stats in a personal EHR I built for myself. Although I don't like going to doctors or other healthcare professionals, I do like having experienced people monitoring me. Maybe I'll have another MRI later this year, or another EMG, if warranted.

Has the neurosurgeon given you a plan for the proposed surgery? Do you have options? Will you need instrumentation?

No surgery date yet. Probably in the next few weeks. I'm waiting for an insurance preauth on the MRI.

Not sure what the options are yet. Hopefully the same as last time which was ACDF surgery. It wasn't as bad as I thought it would be. Way less pain after surgery than I had before the surgery. I could tell the difference as soon as I woke up. The worst part was a horrible sore throat for a few days and itchy stitches. Plus a neck brace 24/7 for 5 weeks.

I am really kind of glad that this is the problem. I was thinking I had ALS or something. I'll take this, but I wish the Neurologist had not blamed Lupus. Everyone always does that and they miss the true diagnosis.

Diagnostic momentum is very annoying. It's particularly problematic for people with multi-systemic disorders. I sometimes remind my docs not to blame everything on Ehlers-Danlos, and other times I have to mention the Ehlers-Danlos to keep them from heading off in another direction. Fortunately, the issues involved are relatively minor.

Glad you don't have ALS, though that doesn't usually present with neuropathic pain. A book I read on patient care last year mentioned a quote from a well-known doctor that went: "Patients can have as many diseases as they damn well please." I'm tempted to mention that quote to some of my doctors but have refrained so far.

It actually began with weakness in legs and hands (past 9 months). The nerve pain didn't really come until a few weeks ago. I've had neck pain, but I am so used to that I didn't think much of it. That was why I didn't really push stenosis although I had that nagging back of the mind feeling.

Getting my docs to take my decreased muscle strength seriously was difficult. Even when I demonstrated what how my muscles shake and tremble as I do certain things didn't particularly interest anyone except for a physical therapist. I'm glad you're getting appropriate treatment now and hope you can regain what you lost.

Why don't they take it seriously? That bugs the crap out of me. If healthy people had those complaints, they would get a definitive diagnosis. Progressing muscle loss can be very serious. My Neurologist didn't even do a physical exam.

Have you had an EMG? I've had two and they didn't show much damage, although I'm told that small fiber damage cannot really be determined. I'm hoping that little damage means that I can regain some strength. I'll probably have to go to PT. I already have a script but never went because I knew they had to find the problem before PT would help. Plus I just do not feel up to it.

I had an EMG, and it didn't show any clear abnormalities. I've read similar things about the limits of EMGs. Also, I've seen a lot of neurologists, physiatrists, and physical therapists. I'm always surprised at how minimal an exam is, and how readily patient reports are ignored, dismissed, or discounted. One neurosurgeon said I had obvious muscle loss but chose not to pursue it. And one of the neurologists told me that I either had a psychological problem or a rare disorder he'd never heard of. It turns out it was the latter.

I'm still pursuing my PT exercises on my own. Since I only get 25 covered sessions per year, I tend to not use them until later on in a given year. Some days I don't feel up to doing my exercises, but a spreadsheet with my progress over time keeps me motivated to maintain a good weekly average of activity.

That's the problem with PT. My insurance only covers 20 sessions. I've had PT about 4 times over the years. Two sessions a week never did much. At least I can find out what I should be doing. I can barely lift my arms above my head so I think shoulders need strengthened as well as arms. hands, and legs.

I also need to make a schedule and force myself to do it daily. AFTER the surgery.

I've seen a Neurologist several times for this, as well as a Physiatrist and a Orthopedic Hand Surgeon. None of them picked up on the problem, although the hand surgeon said that the physical symptoms didn't match the EMG results. He's the only one who agreed that something was going on. I thought it was spinal-nerve related from the start, but they all kept telling me no (except the hand surgeon). They found mild carpal tunnel in both arms and gave me arm splints. That's it!

I think of my physical therapists as personal trainers. I see them from time to time so I can be assessed and given new instructions for exercises to perform on my own. I'd have liked them to be consistent in what they thought I should and shouldn't do, but Ehlers-Danlos is rare and few PTs really know about it. From what I've heard from people I know who've been through PT after surgery, it can be quite helpful.

I wish I were surprised the neurologist and physiatrist didn't pick up on your problem given your history. But from what I've been through for my own situation and what I've heard about from family members and friends, that seems all too common.

I have hand splints too. I still use them from time to time, but they didn't resolve the problems I've had with my forearms since 2000. I mostly use the splits as a way to avoid shaking hands with people when I'm in a lot of pain.

I can only wear mine at night. They bend my wrists back so I can't do anything when I have them on.

I shouldn't be surprised by the missed diagnosis. It's happened enough over the years that I should know better.

To paraphrase C.K. Chesterton: "going to the doctor can be a triumph of hope over experience." However, I want to reiterate that I am quite pleased with my current primary care physician. And despite a lot of bad experiences, I continue to see my doctors. I'm trying to learn everything I can about the process of diagnosis, treatment, and management so I can increase my chances of a good outcome and decrease the associated difficulties.

I usually see the PA at my GP's office, and she is pretty good. I went to her last week with three problems and she took care of them all. The main thing was that she hooked me up with the Neurosurgeon and got me an appointment within days.

I used to do a lot of research too, but I am totally burned out these days. Part of me just doesn't care anymore. I feel hopeless.

It's hard to keep at it when so much effort is required. But keep fighting.

It's not just the effort, it's the length of time. I've been at it since 1998. I had ITP until 2005 then got diagnosed with Lupus in 2006. I used to be anal about lab results and was always on top of things. Now I just let things go because it's too much of a fight all the time. Too many issues, too many doctors.

I'm so sorry to hear about what you've been going through Sandi. All too often doctors want to ignore certain symptoms or pigeon hole you into the diagnosis that they want to give (or not give!). Unbelievably frustrating.

Finding a good doctor is another can of worms. It can be truly difficult to do, and sometimes I've found that the really smart doctors who are passionate about their fields aren't the ones who end up with good reviews. Lots of times ratings are based on personality and "touchy feely" qualities. The one who graduates in last position in medical school is still a doctor.

Waiting for the insurance before you can get your MRI just adds to the frustration. I hope you can get your answers soon. Hang in there!

The duration is challenging. The major symptoms of my disorder started in late 2000, and sometimes it feels like a daily downhill struggle. When things are particularly difficult I fall back on a plan for prioritizing that I have. Lots of little things get ignored. I try to focus on the high-value stuff and get back to everything else when I'm feeling stronger or more stable. This is all probably obvious, and I hope you can manage it.

Aoi - I'm hoping there is some improvement after the surgery because for now, all I can manage are little things. I drove to the grocery store today to get my daughter a birthday card. Came home and emptied the bathroom garbage, put some towels in the washing machine. I'm exhausted and can't do one more thing. It's only 1:00. Doing those few things is pushing myself. My legs won't hold me up for long. Some days I feel like nothing but a waste of space. Ha, do I sound depressed? I'm tired of the never-ending battle.

Momto3 - I have been through so many doctors over the years. I've had 7 or 8 Rheumatologists alone in the past 11 years. My last one just left the practice so the next time I go, I have to see a new one. They don't have any answers, just push harsh meds that cause more damage. I've tried about everything there is.

Maybe things will be better in a few months. I'm trying to focus on that.

I hope you realize you are not a waste of space, certainly not here. Maybe the surgery will provide a lot of relief and improvement. As for having to train new doctors, that's always annoying, especially when the treatments are harsh and not particularly effective. That said, some of my doctors and others have come up with things that help. Maybe yours can do the same.

Thanks, Aoi. I'd love to be able to project that I'm perfect, but that's truly not the case!

Finally! MRI and Neurosurgeon follow-up scheduled for next week! I have Cleithrophobia and am not looking forward to that MRI, but I'll make it.

I like having MRIs done. I just think about some math and try to keep myself from falling asleep while the scan runs. I'm sure you'll get through yours.

So good to hear the MRI is scheduled & also a follow-up. New neurosurgeon or same?

Wish I could help you with that fear, I have claustrophobia to a degree but so far an MRI has not bothered me. Too bad a CAT couldn't have been done instead since that isn't enclosed.

Aoi:

Those things are so darn loud I don't know how you can fall asleep. I use headphones with music but the MRI is too loud to drown out. I distract myself by counting songs. If they tell me the MRI is 45 minutes (this one is), I assume each song is at least 3 minutes. Then I calculate how many songs it will take until 45 minutes is up. I usually get out sooner than I expect with that method. I have a friend who loves to go to the dentist. I can't imagine. I grip the chair the entire time.

Melinda:

Same Neuro. I really liked him and he's one of the tops in the area as far as Pittsburgh doctors go. I'm not claustrophobic, I just can't stand being trapped. I can barely get through haircuts because I feel trapped in the chair. I don't like elevators, or seat belts, or movie theaters, or grocery lines. I tolerate them by knowing that my fear is irrational and time will pass whether I'm stuck in an MRI or on the couch at home. This all started when I began Prednisone. I did okay at work because I could get up and walk around any time I wanted, even go outside. I'd never get through a day at school now though if I had to. It's not really even a fear, it's an obsession with wasting time or wanting to be somewhere else that leads to anxiety, although I've never freaked out externally.

I know you don't have claustrophobia, that's not what cleithrophobia is - but I know what it's like to have a fear of being some place you don't want to be. Good that you have the same neurosurgeon you like/trust - so glad the follow-up with him is so soon after the MRI!