Tag Archives: spinal stenosis

Lyme, Fibromyalgia & More

6 Feb

Sorry I haven’t been active in a while. At the time I started this blog I was sharing my Lyme disease journey in real time and was only one small voice spreading awareness for many different illnesses and disabilities. Now that Lyme disease and other illnesses have finally hit main stream media you can find a lot of good info and stories on the internet. Lyme disease even has a commercial. We’ve come a long way but there is still much more to come. Getting rid of Wormser was one good move and the story above in the photo where chronic Lyme is now not just something used by patients.

Over the years since starting this blog, an old Facebook page I no longer use and a social media account I have tried to helped as many as I can by sharing my story. I would have never thought I would have saved around 6 lives from suicide over the years as well. People would reach out to me in dark times and I helped them through it until I knew mentally they were much better and most moved on with their lives and are happily married now. That’s a great feeling to know because of my support someone didn’t give up on life.

I’ve received countless private messages from strangers thanking me for helping them although I never knew I was. People that said one of my positive quotes reached them at the right time or my illness journey helped get them through theirs. That kind of thing really makes you feel good inside & I’m thankful & proud to all who reached out to me. I shed many tears over their letters. I remember a few started with “you don’t know me & I never comment to you or anyone but I just want to thank you for helping me get through these tough times”. Some I never heard from again just the one message but that one message is what keeps me doing what I do on social media. I’ve said I would be content even reaching or helping one person on this journey but I never thought I helped so many & it’s really a humbling experience & I wish I could meet them all & hug them.

There are pros & cons as I too have ran into evil people who could care less about anyone. I had a so called friend who said he supported me for 4 years. Then I come to find out behind my back he was posting videos mocking me, making fun of my surgery, illnesses, struggles & telling everyone I have “AIDS & cancer”. He tries to sabotage my social media page, he thinks anyone who is chronically ill is “better off dead” & we all just want sympathy not support. There are many others as well. You can say “I have cognitive issues so bare with me I might spell wrong or say something wrong” then you post something & they comment “you idiot you spelled that wrong you’re so pathetic”. If only they knew what we were going through daily but this generation seems to want to find errors to make everyone feel stupid or mock everyone. I’ve seen comments to someone with cancer “hurry and die”. So just do your best to ignore those kind of soulless people & keep being you & sharing your story regardless of a few rotten apples. You never know who you are inspiring.

I’m still waiting on two more opinions for my major neck surgery. My primary says “NO WAY DON’T DO IT, neuro issues, immunodeficiency issues risks are too high” while my neurologist says “get it done ASAP or risk death or being paralyzed from the neck down”. It’s a catch 22 medical issue so I’m damned if I do and damned if I don’t it’s only a matter of time/when it happens naturally or surgically. So that is heavy on my mind at night. Death and quadriplegic aren’t the best two options but there is a good chance I may clean up the spinal cord & get that one issue out of the way. It won’t make my quality of life much better but at least I don’t have to worry about each day waking up & not being able to walk or hitting my neck & risking paralyzes or death. Most people I know who had this surgery or issue are no longer alive so that’s what makes this hard for me on what to do.

My hypertension has been better since losartan daily and I, not passing out every time I stand up anymore. My Lyme is still active but I’m still doing the maintenance dose as needed of antibiotics. My CFS is acting up so I’m sleeping a good 14-16 hours a day. I still spend all my days and nights in bed or on the couch watching tv so nothing really changed since last post. But what has changed are the illnesses in the media like the two I will post below. For those that I haven’t talked to on here in a long time, I think of you all and wish you all the very best. Hang in there we can do this!

Back Stretcher For My DDD & More

25 Jan

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I bought this back stretcher on Amazon for $9.99. I have DDD, many herniated discs, bone on bone, spinal cysts, spinal stenosis….etc so I needed a way to crack and stretch my back at home since I can rarely leave the house. For $10 this thing was the only thing I’ve tried that actually cracks my back and stretches it out. The only con I have is when I put my hands behind my head I get extra dizzy and head rush. But that is my own issue not the product’s fault. I can’t use an inversion table because I will pass out with my POTS and vomit. So this is a cheap way to help your spine out. Just wanted to give some tips about things I use that are cheap and helpful. This may not relieve the pain but it’s good to stretch the spine out daily.

Neurosurgeon Visit And Lyme

11 May

Medical-Malpractice

 

Neurosurgeon Visit And Lyme

Last month my Neurologist told me my he found a new spinal cyst, more bulged discs and my spinal stenosis was worse. He told me I was one “small jolt away from be paralyzed from the neck down”. That’s enough to scare you. So I was a little nervous for my appointment yesterday with the neurosurgeon.

For the first time ever my neurosurgeon really surprised me with his answers and he was a really nice guy. I won’t bore you with how the long appointment went since he was running an hour behind. He was probably one of the nicest doctors I have since since this nightmare started.

The first thing my neurosurgeon asked me when he walked in was “did your kids do this pain chart’? (I posted a picture of it below) My pain chart circled the whole body and I filled in the various shapes all over the body. He said “there is no way your spine is causing all of these issues you must have an illness” and I told him about lyme disease. He said that makes sense.

So after going over some physical tests with my and my 2 CD of MRI scans he said my neck was worse. He said I have “hypermobility” and he can tell by my fingers. He measured the compression on my spinal cord and said that it wasn’t enough to cause he to perform emergency surgery. He seemed confused the whole time we talked.

He said I do not need surgery and I should be fine. He blames my paralysis and loss of ability to walk a couple months ago on lyme. Yep he actually told me he believes I am really sick and lyme is causing it all. I can’t believe a neuro said these words. So no surgery and no plates and screws. He said he can do the surgery but with all of the pain I have he said “what is the point you wouldn’t know if it helped anything”.

He recommends I go to a well known hospital and have a a community of doctors or meeting of the minds to figure out what is all wrong with me besides just lyme. He saw my medical records and each doctor has different diagnoses such as Fibro, Lupus, Lyme, CFS….. so he said I need Dr House in my corner who will figure out exactly what is going on.

He said I was a nice guy and he really hopes I can get some help. Which was very kind and doctors have never said that to me. He even talked about the 49ers with me. I was very pleased with the visit and happy I do not need surgery. Although it doesn’t cure the paralysis, radiopathy and pain at least he said it was the lyme and not my spinal cord for sure.

pain chart

My pain chart. My hand cramped or I would have marked more.

Got My MRI Results Tonight

15 Apr
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This picture is from 2010 I don’t have a current one yet.

 

Got My MRI Results Tonight

Appointment

Friday I went in to have an MRI of my C-spine and Thoracic Spine. My right hip and Lumbar have been hurting also but the doctor wanted to work from the top down first. About 1 hour and 45 minutes before the appointment I received a call that said I need to “rush to the imaging center asap doctors orders”. So my dad took me as fast as we could.

This is most likely my 4th or 5th MRI but my memory is bad. I laid on my back as usual and was sent all the way in the machine as expected. What I didn’t expect is the excruciating pain in my back laying on that table. It was mainly on my lower lumbar at the top of the hip/pelvis.

The pain was a radiating “toothache” type pain where it would not give up (which is not unusual with us spoonies). On a ill person’s pain scale it was at least a 10-12 where I was biting my lip, grunting and holding back from crying out loud. I had tears in my eyes and could barely talk back to the MRI staff as she asked me questions. I wanted so bad to move and get out of there but I learned from a bad 2.5 hour MRI experience in the past not to move one muscle or you have to do it all over.

When the “bleep, boop, arghhh, grrr, tock” sounds from the MRI machine ended I was so relieved. It was a little over and hour of not moving. For those that never had an MRI it is very easy if you can lay still and you are not claustrophobic which I am not.  The sounds will drive you insane though. I just never had so much pain while laying in one. The lady said “wow great job you must be a pro at this”. I went to stand up and could barely walk or see and ran into everything on my way out using the wall as a guide.

Results

Around 7pm last night my Neurologist called with the results. I am still waiting for the Neuro surgeon to call me (the one who let it go this long). My Neuro doctor is about the only guy I really like as far as doctors and he even wrote “lyme disease” in my report without rolling his eyes.

The doctor literally said “Bryan I am worried, you do not do anything you need to stay on the couch and even if you get one bump you will have full paralysis”. He said since my last two MRI’s things look worse and the flattening of the spinal cord is worse. I also learned of a cyst on the spinal cord now which has me curious if it is lyme since mine has been in cyst form. The T-Spine also showed a bulging disc but not bad. My L-Spine is where most of the pain resides also so I know once I have that done it will show wear and tear.

Hi Bryan,
This is your MRI of the cervical spine repost as you can see you have degenerative changes and disc herniation at level C5-C6 and causing moderate spinal stenosis and flattening cord there is also mention about small cyst formation. The findings showed further mild progression from 8/10/2010 MRI of C-spine. Your thoracic spine also showed mild degenerative changes, but nothing serious,
My recommendation is same as I mentioned previously that is  to get consultation and treatment with Dr Schneiderman.
Dr. Suga
CLINICAL INDICATION: ICD-9 723.0. Cervical spondylosis, bilateral
upper extremity radiculopathy.
Comparison: August 10, 2010.
Technique: Sagittal T1, T2 and STIR sequences, and a
three-dimensional axial T2-weighted COSMIC sequence, through the
cervical spine.
Findings: The craniocervical junction is intact. The cervical
alignment is satisfactory. The vertebral body heights are
maintained. There is no bone marrow edema. Disc desiccation is
present at C2-C3 through C6-C7. There is early marginal
osteophyte formation and mild loss of disc space height at C5-C6
and C6-C7. The imaged portion of the posterior fossa content
reveals no mass effect. No intrinsic spinal cord signal
abnormality is observed.
Evaluation of the individual disc levels demonstrates:
C2-C3: Trivial disc bulge is present with a slight broad-based
left paracentral disc protrusion, without significant spinal
canal stenosis. There are mild uncovertebral degenerative
changes, and mild left-sided facet arthropathy changes are
present. No significant foraminal stenosis.
C3-C4: Uncovertebral degenerative changes are present
bilaterally, with mild left foraminal stenosis. Trivial disc
bulge is present without spinal canal stenosis.
C4-C5: Mild uncovertebral degenerative changes are present, with
mild left foraminal stenosis. Trivial disc bulge is present,
without spinal canal stenosis.
C5-C6: Moderate spinal canal stenosis is present as result of
disc bulge and a superimposed moderate-sized broad-based central
and right paracentral disc herniation. A small amount of
associated superiorly extruded disc material is present at the
central position. There is moderate cord effacement with
flattening and abnormal concavity of the anterior spinal cord
contour, and flattening of the bilateral posterolateral cord
contour is. The herniated disc has mildly increased in size and
the degree of spinal canal stenosis has mildly increased.
Uncovertebral degenerative changes cause mild bilateral foraminal
stenosis.
C6-C7: Borderline spinal canal stenosis as a result of disc
bulge. Uncovertebral degenerative changes narrow the left lateral
recess and mildly narrow the left neural foramen; left lateral
recess narrowing has mildly increased. No right foraminal
stenosis.
C7-T1: Normal.

Impression:

Impression: Mild to moderate cervical degenerative changes.
Moderate spinal canal stenosis with moderate cord effacement at
C5-C6. Borderline spinal canal stenosis with left lateral recess
narrowing at C6-C7. Degenerative changes at C5-C6 and C6-C7 have
mildly worsened compared to the August 10, 2010 study. Stable
milder degenerative changes at other levels.

Surgery

I know many of you have had this surgery and are waiting to have this surgery. I will stay positive and I know there is a good chance this will get rid of a lot of the pain, stiff neck, neuropathy, numbness, headaches….etc that have been bugging me from the discs. I will most likely consult with my LLMD but at this time the Neuro is telling me it is a must have and as soon as possible.

I think I have chosen that the fusion is not for me and I want TransCorporeal MicroDecompression (TCMD) on my neck if I qualify. It is done but just drilling a hole in your own bone and they fix the bulge through the hole instead of getting a new bone or plates and screws. It is said to be better and the latest and greatest thing.

Here’s a link that talks about the surgery and has videos.

http://brain-and-spine.com/back-surgery.html

– I thank you all for the support and kind words. I am still very ill from lyme and depression from other things going on so I try to be around for support when I can. I wish you all well on your illness journey or your loved ones and I hope you find some sunshine on those dark days. Try to stay positive and never give up better days are ahead.

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Neurologist: Surgery Needed ASAP To Avoid Being A “Quadriplegic” – Lyme Ruined My Spine?

11 Apr

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Neurologist: Surgery Needed ASAP To Avoid Being A “Quadriplegic” – Lyme Ruined My Spine?

After losing the ability to walk recently my walking slowly came back. Vertigo has not been my friend though so I never walk like a “normal” person. I knew my body was telling me something and I bought a wheelchair because I could feel something was wrong. My body was right so always listen to it. I had a lot of bad news this week not just about me so let’s just say I am a walking zombie.

At my neurologist appointment today the neurologist said “why did you come to me, you need to see a neuro surgeon asap”. He did the standard muscle testing and poked needles in my body and I couldn’t feel most of them. I have numb, cold areas down my spine, legs and feet do not work well, a lot of spinal pain. My arms are really numb and couldn’t feel the safety pins he stuck in them.

The neuro said “you are very close to becoming a quadriplegic and you should have had surgery back in 2010″. Well back then my Lyme doc said “no surgery” due to the antibiotics and the neuro surgeon told me not to come back until I was losing feeling in my arms because the surgery is not the greatest and try to get by as long as I can.

I was told by my LLMD and by my new LLND that Lyme can ruin the spine. So I am not 100% sure if this is Lyme related or just a coincidence. But how does ones discs herniate when they just lay in a bed all day and barely walk around the house? The doctors seem to think I am out playing sports.

I am going to remain positive and know that this surgery will help keep me from being a quadriplegic. I am now looking at options for surgery so if anyone has feedback good or bad feel free to comment. I am thinking about the laser surgery in Arizona versus the standard plates and screws.

I was looking at the Laser Spine Institute in Arizona. Any feedback? Better than normal surgery?

http://www.laserspineinstitute.com/back_problems/spinal_stenosis/treatment/surgery/

 

 

– Hope you all are having a better day. Keep your head up better days are ahead.

 

PS I haven’t slept in 24 hours so I may not be really writing this and just hallucinating. LOL

 

 

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Quick Update – Could Not Walk, Wheelchair Soon

23 Mar

invacare-wheelchair-1

 

Quick Update – Could Not Walk Wheelchair Soon

The last month has been one of the worst for me. I feel like what little progress I made in 2 years has relapsed. My spine and neuro symptoms are getting worse. I will be seeing a new LLNP/GP next week for more MRI’s on my spine and hip. Still a lot of severe pain all over and down my spine so I will be looking for something stronger than Dilaudid and Norco like maybe Fentanyl patches. I have already tried every pain killer known except for Tapentadol which seems just like what I already take. Tired of crying myself to sleep. Some of the pain is non-lyme old injuries.

Tonight I was trying to get up and walk and my brain and eyes were looking forward yet my body would not move or I would walk backwards. It was very strange to have my body and brain not on the same page. I could take steps but very short and my legs were like noodles. I started to slur my speech and talk very slow (which is not unusual). It just seems more frequent now like maybe my spinal stenosis is choking my spine finally, my neuro is worse from lyme or my old lower back injuries are doing damage.

For months now I use the walls and counter tops to hold me up as I walk. I have hyper POTS so I also faint or black out a lot. I am a “fall risk” and I feel a walker is not enough support so I would like a wheelchair. I have been doing my best to avoid a wheelchair but I think it’s time to get one for those bad days. I was already bedridden 2 years ago and could barely walk before starting treatment.

With so many medical issues (fibro, pots, lyme, lupus, spinal stenosis, c-spine herniated discs…etc) it is hard to say if this is 100% lyme related. I do believe that the lyme caused my herniated discs in my c-spine. I know a lot of my neuro issues like turrets twitches in my head, tremors, unsteady balance…are lyme and TBD related.

It’s scary to know that the rest of my life could be in a wheelchair especially if my stenosis and spine get worse but I am still at peace with all my illnesses and I will push on with a smile and continue to support others. It’s not the end of my life, it’s just a new beginning and new challenges. I want you to fight this disease with me and never let it define you or make you want to give up. Keep up the fight fellow warriors and hold your head up high.

 

– Hope you find a reason to smile each day. Take care for now….

 

 

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Sore Throat, Arthritis And CFS

30 Aug

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Sore Throat, Arthritis And CFS

I woke up one day last week with my usual sore throat. This isn’t the chronic strep throat I get but more like a regular sore throat. This time the pain is only on the left side of my throat and down deep to about where my throat meets my collar bone. I can feel the pain also going into my left ear. Many years ago when I was healthy I would probably have seen a doctor about this or worried but this happens so frequently and it goes away on its own. I believe it is just a common Lyme symptom.

We had two days of cooler weather this week. The weather has been averaging in the 100’s range and each week it can be anywhere from the mid 90’s up to 108 degrees. For two days the weather was cloudy with some sprinkles and in the 70’s. Just this small weather change and I could feel it coming.

My arthritis was acting up so I knew the cold was coming. One night it was pretty cool around 40-50 degrees and a cold wind blowing in my window. I could barely walk my knees were so stiff. When the cold hits me my body gets stiff as a board and my joints refuse to bend. The snow is beautiful and I always wanted to live in a city that gets light snow but that kind of cold makes my arthritis hurt worse. It is a constant, nagging and severe pain.

I remember growing up and thinking that all kids, teens and young adults felt the same pains I did. I had no idea I was so sick since doctors said I was healthy. I would wake up in my early 20’s and feel as if I had been hit by a car and thought maybe I worked too hard at my job. I thought to myself “man if I am in this much pain now just think how I will feel in my 90’s”. Well now I know I have the body of a 90 year old even though I’m only 37 (I think).

I always thought my pains were common and that maybe my body was slower to heal from a hard days work or partying. I never really took time to think that I never had a day without pain even when I spend a lazy day doing nothing. It took until I was about 30 years old before one doctor (who was just filling in for my regular doctor) said “hey you have arthritis, why does a person your age have arthritis”. My regular doctor came back and said “I don’t think you have arthritis”.

The five years later that same doctor who had diagnosed me with arthritis was now my regular doctor. He then diagnosed me with hypothyroidism, Fibromyalgia and then spinal stenosis. Once again he said to me “why does a person so young have spinal stenosis which is usually found in my patients 60 and older”. I remember hearing this same thing in 1999 when I had elderly pneumonia when a doctor said “why does a 21 year old have elderly pneumonia, this is the pneumonia that usually takes the life of the elderly…very odd”.

It amazes me that not one doctor ever thought to look into the pattern of me having so many rare and elderly type medical issues for nearly all my life. It was always “you just have IBS you will be fine” or “you just have carpal tunnel that is nothing big” but why did nobody say “why do you have a new symptom or medical issues every other month”. I cannot even name the rare medical issues I had as a kid but that had long names and I haven’t heard of them since.

This month has been not so good as usual. My chronic fatigue syndrome (CFS) has just taken away what little energy I have and when I sleep now I feel I can sleep and never wake up. I don’t know if I like my insomnia better or the CFS. Getting 30 minutes of sleep per day is really a nightmare but then so is wanting to sleep all the time and having no energy at all. I would love to have something in between them both where I sleep like a normal person and have energy.

My cognitive issues are getting worse. My dyslexia is more jumbled words than usual. My short and long-term memory is worse. A loss for words happens more often. I cannot remember names of actors and so on. I kind of feel like and elderly person or like I have beginning Alzheimers disease.

*This is a note to myself so I will remember but I had a day this week where I was going to the bathroom standing up (pee) and my body started stinging with pins and needles and I was blacking out. Luckily I was done and ran to my room and passed out on my bed for a few minutes. I had this happened a few months ago where every time I stood up I would black out but it hasn’t happened in a while.

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