Could my mystery ilnesses be Spinal Stenosis?

Bones, joints and muscles
1

Hi Everyone!

I am aged 48 and for the last 5 or so years I have been plagued with what I thought were mostly unrelated illnesses, cumulatively they have caused my quality of life to diminish greatly. The symptoms I have are:

Peripheral Neuropathy and Neuralgia

Sciatic pain from lumbar down back of left leg

Chronic fatigue, lethargy, trouble sleeping

Breathlessness on little exhertion

Back and neck pain

Sinus and inner ear problems

General anxiety

Irratable bowel and bladder

I Cannot walk more than 50m without bad leg pain esp right calf muscle which cramps and then a numbness and pain develops in right side of foot, this I have found the most debilitating, if I stop and rest it is relieved.

I have had blood tests for diabetes etc, a scan by neurologists on head and neck last year showed no problems apart from arthritis (type unknown) at C1, lung x-ray showed no apparent lung problems, colonoscopy showed no bowel problems, doctor dismissed Fibromyalgia instead said I was suffering chronic fatigue and all most likely caused by anxiety. I believe Doctor now thinks I am a bit neurotic.

About 6 months ago I was drying what little hair I have (not too vigorously) when I my neck went crack at C1 , possibly a herniated disc I have been in severe pain for months and it has still not healed and seated neck flexion exercise causes me severe pain, I also have a constant pain around C7/D1 which radiates out across my shoulders and chest. Most of the constant pain I feel is down my left side.

Could all my symptoms be explained by Spinal Stenosis?

Would Cervical Spinal Stenosis at C1 cause Thoracic and Lumbar nerve problems?

If not could I have all three, Cervical, Thoracic and Lumbar Spinal Stenosis?

Am I finally on the right track?

Any help would me greatly appreciated.

Jimmy

2

Hi. Well first I would say you have a lot of medical knowledge.

I have been diagnosed with lumbar stenosis and much of what you say applies to me. The IBS, sinus problems, sciatica, not sleeping well, really bad cramp in the night, but my main problems are severe buttock pain and top of my legs which are also very weak! I often get trapped nerves in my neck but they don't hang around too long!

I am about to go on the waiting list for surgery to my levels 4&5 in my spine.

If you have stenosis, surely this would show on a MRI scan as mine did!

3

Thank you Karen, hope all goes well with operation

4

It could be that or something else.  You need to see a NEUROSURGEON...no one else.  He has to order a CT/Myelogram WITH CONTRAST.  This is the "gold standard" test for figuring out spine problems...waaaay better than an MRI.  Gives the docs a complete map of your spine so they can see the issues and put a game plan together.  Once you get a definitive diagnosis, then come back and we'll talk...

5

Hi Chico,

We have spoken before but I would just like to ask how you have so much medical knowledge?

Linda

6

Ready?

- 28 operations in 17 years; most minor: trigger fingers and carpal tunnel, some more severe: gallbladder removal, 1/3 of stomach removed from polyps, double hernia, two shoulder scopes, four knee scopes, then the big ones: new hip, new knee, one laminectomy and two spinal fusions (4 1/2 pounds of metal with another knee to go.

- ...plus 4 kidney stones, endoscopies and colonoscopies

- married to a pharmacist for 25 years

- currently married to my lady who was a psych nurse for 30 years

- dealing with my first wife's death from breast cancer in 1983

- dealing with my current wife's brain aneurysm surgery and 2 strokes in 2010

- dealing with my daughter's successful defeat of breast cancer at age 35 four years ago

- dealing with every psych drug on the planet during my wife's brain recovery

- never taking a drug until I've done the research on side effects and interactions

- never taking a doctor's word at face value; always asking questions and demanding answers; doing the research from ONLY reputable websites like NIH, Mayo Clinic, etc.

Plus...

- My cousin Greg (my old keyboardist) has been an ER doc for 50 years...has seen it all...

- My great friend Mike (my old horn section leader) has a BS in Pharmacy, a Pharm.D. (doctorate) in pharmacy, a Ph.D. in chemistry, a Ph.D. in phamacokinetics (how drugs work), a Doctor of Laws degree and is recruited to present expert testimony on pharmaceuticals at courtroom trials nationwide.

I have a wealth of information at my fingertips from personal experience and the knowledge of some very incredible people.  When I don't know something...I dig for the answer until I find it.

7

Thanks Chico

8

WOW 😱

What else can I say? I do know now that I have a 'go to' person to ask questions and if he doesn't know the answer he knows somebody who will lol 😁

Thanks for that Chico Marx x

9

Relentless...get to be that way.  When you have a question that needs an answer, never give up.  But be careful of the internet.  I wrote this for my TKR group but it applies to everyone...

https://patient.info/forums/discuss/reliable-tkr-information-582123

 

10

Thanks again Chico Marx 😘

What is your take on Gabapentin? I would like this to be my next drug to stop but have read so many horrendous tales on the net that I have succeeded in scaring myself witless and now don't know what way to go! I just wish doctors would tell their patients about the withdrawal symptoms before prescribing!

Linda x

11

I hated Gabapentin (Neurontin).  Put on 20 pounds in a month and it did little for the nerve pain.  Lyrica didn't put on the weight but also had no effect.  When I had my LLIF surgery at L2/L3 to cure the stenosis, I had 3-4 weeks of nerve pain in my thighs but would NOT take those drugs.  I used AsperCream with 4% Lidocaine and rubbed that in to stop the problem.  Afterward, I was told that I could have asked for Lidocaine patches!!!  

The nerve pain was caused from the surgery when they retract the nerve roots to insert the LLIF device.  Temporary...handleable...

Not a big fan of drugs that have huge withdrawal effects but then it's different for everyone.  The best thing is to talk to your doc about the best way to titrate down. You can't just stop...you have to slowly decrease the level of the medication in your bloodstream over time. No sharp up and down spikes.  Typically, you start by halving the dose while maintaining the same schedule.  If that doesn't work (side effects), you may have to alternate full and half doses on the same schedule.  It's very individual.  Some people can titrate to the next lower level in a week...some take a month.  Your doc will guide you.  Better...talk to your pharmacist.  They know more about the drugs than the docs.  It's all about the half-life of the drug, dosage and schedule.  The ideal titration would be demonstrated by a graph showing lowering levels in the blood over time with smooth curves between the titration levels...no sharp drops.  

Hope this helps...

12

Hi guys 

I am 28 and recently had my first MRI due to years of back and leg pain. What is spinal stenosis and how serious is this? My report reads that I have bilateral formainal stenosis compressing on nerve root (L4 And 5 discs are compressing also) like yourselves on the waiting list for a while now before I get to talk to anybody....I feel your pain x

13

Thanks again Chico Marx, you are a real gentleman x

I'm hoping they are as easy as Tramadol to come off but somehow or other I doubt it! Yes I know the way to come off them but I know my GP will keep me on track with them. I don't know why, maybe you will, but the last couple of weeks I have been in such pain, it's a long time since it has been this bad. Also a strange feeling of numbness across my lower back but aching at the same time! The worst though is across the top of both feet right up to my ankles, didn't have that before either! 

Hope you are keeping well and enjoying the music - what kind of music and group/band did you have?

As usual good speaking to you, I hope you don't mind my continual questions.

Linda x

14

Maybe you need a chiropractic adjustment.  I've had sciatic pain many, many times and, except for a bone spur at L4 crushing my sciatic nerve root one time, a chiro always fixed my pain...always.  No drugs...just a good alignment of spine and pelvis.

I started drums and guitar at age 11 in 1959 so I was a gigging musician in my teens doing all sorts of stuff including a Beatles band.  Fifty-eight years later, I'm still a performing musician...bassist with lead and harmony vocals...blues and blues/rock.  Can't stop...it feeds the right side of my brain...

15

Hi Chico Marx, I haven't heard many good, if any, reports on chiropractors. I've only heard that it's best staying away from them so I don't know what I would do about that but I have asked myself many times before if they could help me. I do know of one that is fairly close to where we live maybe I could go and have a chat.

I'm going on Wednesday morning for another CT scan as my Consultant wanted to make sure that nothing had moved that could maybe be giving me all this pain especially as I was doing so well until the last couple of weeks.

You have had a great musical career (?), my father was a great musician in his earlier days but it seems to have stopped with his generation. I do love music and I loved to dance before my back started playing up!

Linda

16

I played hockey for 45 years.  There were times, I'd be out for a rollerblade skate and fall on my un-padded hip.  Chiropractor did their infamous "pretzel-twist" maneuver and the pain would be gone in seconds.  In my later years, I'd get sciatica from locked SI joints or a misaligned pelvis due to walking "funny" from knee pain.  A few weeks of therapy and it was gone.  Same thing with some simple spine problems that did not need any other type of intervention.

People either love 'em or hate 'em.  I've been lucky to find some good ones.