Scared, please help!

[curvykatie]

Im really scared at the moment - I just dont know what is going on.

Ive had increased back pain over the last 2 years and eventually got sent for a MRI which showed that I have developed secondry curves above and below the site of my fusion. However my surgeon doesnt seem to think that the new curves are a problem at all and thinks that the pain I am in is nothing to do with my spine but is neurological.

Ive had many tests over the last few years to see if my pain is caused by neurological problems specifically MS all of which have been inconclusive. However a couple of tiny dots were found on my brain but the neurologist said that they were not unusual and unlikely to have caused any problem.

3 weeks ago I fell asleep on my right side (i usually can only sleep on back as its too painfull on either side) for 3 hours and when I woke up my right arm and leg had gone to sleep. After a few moments everything had come back to life apart from my leg which felt a bit weak and wobbly. After 2 days of this I went to my doctor who was worried that I had a stroke and sent me to the vascular clinic for tests.

They ruled out a stroke but started investigating into whether I had MS again due to the tiny dots on my brain but the consultant at the time said that they weren’t in the right place to cause the symptoms I was having. He said the next step would be to have a spinal scan and a lumbar puncture to see if I had something irritating my spinal cord.

2 days after this he called to say I didnt need a lumbar puncture or a spinal scan and that it probably is MS but would be very difficult to diagnose. I had to beg for a spinal scan just to be sure but I wont get this until september.

I know im not an expert but surely a crooked spine could be responsible for causing the symptoms I have? It seems strange that none of the doctors I have seem pay any attention to this.

Ive looked at the symptoms of MS and spinal compression/stenosis and although there are similarities with the symptoms of both, I seem to have more of the spinal ones than the MS ones.

What I would really like to know is has anyone else had similar symptoms and similar issues with getting help? I know my body and I just cant help but feel that this is all something to do with my spine rather than MS.

I know this is a terribly long post but I would really appreciate it if anyone would respond and discuss it with me!

Thanks very much!

Katie. xxxxx

[Pooka1]

Hi. Sorry to hear of your pain.

I don't know what I'm talking about but are you saying you had NO curving above and below your fusion and now you have two new curves? How big are they and how long has it been since surgery?

Can you post the radiographs?

Good luck.

[Doreen1]

Hi Katie,

Last year I had just about every MS symptom imaginable and I was terrified that I had MS. Primary doc felt I probably had it and ordered multiple tests. MRI results were normal so I was sent to a neurologist. Neuro tested me every which way but loose and the final diagnosis was an extreme B12 deficiency. I've had body parts go numb for days when I wasn't aware there was a dosage change when I shifted from weekly B12 shots (1,000mcg) to weekly B12 nasal spray (500mcg). Major whoops by not noticing the dosage difference.

It was shocking how similar the symptoms were between B12 deficiency and MS. I'm thankful that my issue was resolved with weekly B12 shots. It may be worth asking your neurologist about your B12 levels. My primary doc did NOT catch my low B12 level, it was my neurologist who caught it.

Warmly,
Doreen

[curvykatie]

http://www.facebook.com/photo.php?fb...type=1&theater

I hope you can see the radiographs ive posted. They show 2 new curves, one above and one below the original fusion. I did not have these before. After the initial fusion surgery in 2001 my spine was lovely and straight! I was pretty much pain free until 2006 when I started feeling pain in my upper spine and right shoulder but I increased physio and general exercise which seemed to control it for the most part. In the last 2 years the pain has been increasing and is harder to control with physio and exercise, i find sleeping uncomfortable like I used to before the fusion. At the times when my back is really painful and continues to get worse it often results in some of the new symptoms I posted about - pins and needles and muscle weakness, I can aggravate these symptoms by pressing or laying on my right side. This, to me, says that it linked with my spine, im not convinced they can be dismissed as MS but nobody seems to want to listen to me!

Ive had some blood taken to do more tests to see if I have B12 deficiency so I should hear about that soon.

[Pooka1]

http://www.facebook.com/photo.php?fb...type=1&theater

I hope you can see the radiographs ive posted. They show 2 new curves, one above and one below the original fusion. I did not have these before. After the initial fusion surgery in 2001 my spine was lovely and straight!

Wow that is pretty amazing that you went from straight to that! How many years did it take? If it was short then I don't see how your surgeon can rule out that your spine is the source of your pain. That seems much more likely than MS but what do I know? Or it is one hell of a coincidence.

So apparently you had a thoracolumbar curve that was fused T11-L2 anteriorly, yes? When was your fusion? The thoracic curve looks significant and I would think the surgeon would need to rule out that it is structural. If it is structural then he has to determine if it will continue to progress.

Do you have any radiographs from right after the fusion showing your spine was perfectly straight? That would help the surgeon determine if your spine is collapsing above the fusion I think. There are various scenarios where the levels to fuse to aren't chosen correctly or couldn't have been chosen correctly where problems can occur like adding on. The surgeon needs to rule out that your thorax has added on.

Good luck.

[curvykatie]

Hi Sharon

It took 10 years, Im 31 now, but its only been painful for the last 2 years. I had 8 wonderful pain free years! Ive been able to ice skate and play netball during this time!

I had an anterior surgery as you say. Ive been trying to get hold of the x-rays of my spine right after the surgery but the surgeon says they are in storage as it was before things were digitally stored! He doesnt seem interested at all in comparing!

I dont see at all why he is completely ignoring the the curves and not willing to relate them to my symptoms. I think its time to see a different surgeon!

Katie. x

[curvykatie]

My spinal surgeon has referred me away to a neurologist now, he says that my pain is not due to my back and surgery wont help me. He says the pain is because I have MS although this has not been proven yet. When I asked what about the new curves in my back he said that they couldnt be addressed as it may possibly bring on another MS attack.

I dont know what to think or do. I have kind of been sent away now being told I probably have MS and thats it. I dont understand why my back is not being looked into. Ive read tirelessly on the symptoms of MS and the only similarities with my symptoms seem to be pins and needles and numbness, I dont have any of the other symptoms. Meanwhile I have 2 new curves, a bulging disk and horrendous back pain, am I just supposed to put up with this now?

Im so worried and upset and just dont know what to do? Im supposed to be getting married in December and I feel bad that my boyfriend is marrying me not knowing what is going to happen to me! I feel like I am 100 years old and there doesnt seem to be anyone who can or wants to help me. I dont want my boyfriend to be tied to someone like me if Im just going to carry on getting worse and worse until god knows what I end up like!

Well, I just wanted to say all this out loud really as I havent really told my friends or family how I feel or my worries yet as i dont want to worry them!

[Pooka1]

I think its time to see a different surgeon!

Agreed.

He should have told you how he ruled out your spine as being causative of the pain that developed in the last few years. Also, he should have told you what exactly about your case makes it much more likely your symptoms are due to MS an not a progression in the curve above the fusion.

Are you also leaning forward from the point above the fusion?

[Pooka1]

Ah, one more point.

If the location of the pins and needles and numbness doesn't map to the new curves, I can see the surgeon being able to rule the curves out as being causative. For example, if you only have the symptoms in your arms, that maps to the spine in the neck. It would not be possible for the two lower cures to cause that as far as I know.

Here's a list of what part of the spine controls what...
http://en.wikipedia.org/wiki/Spinal_cord

Segmental Spinal Cord Level and Function
Level Function
C1-C6 Neck flexors
C1-T1 Neck extensors
C3, C4, C5 Supply diaphragm (mostly C4)
C5, C6 Shoulder movement, raise arm (deltoid); flexion of elbow (biceps); C6 externally rotates the arm (supinates)
C6, C7 Extends elbow and wrist (triceps and wrist extensors); pronates wrist
C7, T1 Flexes wrist
C7, T1 Supply small muscles of the hand
T1 -T6 Intercostals and trunk above the waist
T7-L1 Abdominal muscles
L1, L2, L3, L4 Thigh flexion
L2, L3, L4 Thigh adduction
L4, L5, S1 Thigh abduction
L5, S1, S2 Extension of leg at the hip (gluteus maximus)
L2, L3, L4 Extension of leg at the knee (quadriceps femoris)
L4, L5, S1, S2 Flexion of leg at the knee (hamstrings)
L4, L5, S1 Dorsiflexion of foot (tibialis anterior)
L4, L5, S1 Extension of toes
L5, S1, S2 Plantar flexion of foot
L5, S1, S2 Flexion of toes

[curvykatie]

Thanks for this information Sharon, its great! It helps me to understand my spine a lot better and see how the curves in my spine could possibly relate to my symptoms! I also think you are right about finding a different surgeon although i dont know how! Ive googled but couldnt really find clear answers, I guess that kind of info is reserved for the medical profession in the UK, our healthcare system is useless! I wish I could have it done in the USA where revision surgery seems much more common place although I probably couldnt afford it as I havent been able to get medical insurance here because of my spinal condition.

[curvykatie]

Agreed.

He should have told you how he ruled out your spine as being causative of the pain that developed in the last few years. Also, he should have told you what exactly about your case makes it much more likely your symptoms are due to MS an not a progression in the curve above the fusion.

Are you also leaning forward from the point above the fusion?

Im leaning over to the right side a bit, my right shoulder blade is sticking out and my rib hump is worse and my right shoulder sits higher. Even if i do have MS, I dont see why these other issues should be left alone?!

[leannebr]

I have had the symptoms of MS since my surgery. I'm 10 mos post op. Ive seen 2 neurologists and neither has a clue whats wrong. One didnt examine me or look at MRI and said it could be PHN or Complex Regional pain Syndrom-or Sudoform (Sudoform is the it's all in your head diagnosis ). The MRI I had was ordered by a PA I have been seeing and the radialogist said nothing was abnormal back in May. There wasnt a question of Ms at that time.
I have read that metal implants can cause MS as well as dental fillings for some people. Its all research though. But I still dont have any answers to my symptoms. If you get do please share what you find out and best of luck and prayers.
I also wanted to say that it IS a scary feeling when you have these symptoms and you dont know whats causing it, and you feel like its progressing.