Standup Zone Forum
General => Training, Diet, and Fitness => Topic started by: stoneaxe on February 03, 2015, 12:09:56 PM
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Neck, C5/C6 to be exact. Got the word today that surgery will likely be needed to fix my neck issues. Disc removal, bone graft, etc.. Getting a cortizone shot next week and we'll see what happens but obviously temporary and not going to prevent possible further nerve damage so the surgery is probably going to be scheduled for sometime in June or thereabouts (first available spot on this guys calendar). I may push it back until after the CCBC season but not sure. Good news is I'm at least able to get back on the water now since its not at risk for causing more damage than normal. Of course that means it will now go flat for an extended period...sorry guys.
To top it off I also have to go see my neurosurgeon. The neck scan revealed a large sub-arachnoid cyst (for the docs in the house) pressing on my cerebellum. I'm going to get that taken care of ASAP. Unlikely to be causing the problems according to the Ortho doc but needs to get drained/shunted anyway and if it does end up being the culprit I'd prefer to avoid the neck surgery. Sucks getting old... :P
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Have not had it, but my advice would be to get at least three different opinions before proceeding to surgery, including conservative options with more specific physical therapies. Surgeons as a species tend to want to cut first and ask questions later, it's their bread, butter and ego mechanism, so it would behoove you to avail yourself of multiple sources of input before making a decision.
The arachnoid cyst sounds like it needs to be done simply because of its nature, but the neck surgery may have options that you might wish to explore before committing to the knife. Also, I hate to say it, but try to size up your surgeon on the narcissism scale. Too self involved, cold and un-empathetic may not always be in your best interest. On the other hand, a cringing weenie isn't either so I don't envy your process.
I would also read Jerome Groopman MD's book "How Doctors Think" from cover to cover. Groopman is a physician who himself has had to look for medical treatment for various conditions, including disc surgery and orthopedic surgery. In spite of sophisticated access to other doctors, information, consultation, facilities etc. he had to make some rather baffling and mysterious choices himself when shopping for care and evaluating providers, and he goes over his entire process in the book.
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Yeah.....been there and done that, learned a lot during all my researching and the experience with my vestibular schwanomma. Basically have come to the conclusion you need to very careful you aren't being guided to whatever the specialty is. Not that anything nefarious is going on....at least not for the most part....just human nature.
I've looked closely at the doc in question. As it turns out half my family has seen him and I was referred to him by a friend that thinks the world of him. The plan is to see how the shot does and if therapy or other methods help but to schedule the surgery in case there is no change. Most of the reviews on the doc are over the top good and include some where he didn't suggest surgery but guided the patient to therapy with good results. Pretty much every one mentions what a great caring bedside manner he has. Surgery is last on the list of options that was presented. In my case he doesn't think the others will help however. I'm certainly no expert but looking at the MRI I can see why.
I'm also going in to see the surgeon that removed my tumor about the cyst. The best Dr I've ever met. No doubt we'll discuss the disc as well. Not his specialty but I value his opinion.
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Sounds like you are in good hands. I think the less weight bearing the disc, the greater the chances for a good outcome.
My anecdotal gatherings over the years seem to indicate that heavy weight bearing discs can go any way, the operation can make them worse, the same or better.
I have one acquaintance who had terrible back pain for years. The MDs told him he would need spinal discectomies and fusion. He went to a physical therapy savvy chiropractor, who put him in series of torso casts for six months, which basically held his spine in a stretched position in a certain way and allowed a healing process. That and physical therapy made him completely pain free and he remained so over ten years after and as far as I know his pain has never recurred.
My neighbor has had back surgery, neck surgery, shoulder surgery, nerve ablations and has a blind spot in one eye, and he is still out there SUSing strong.
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When I started having issues with my L spine I started deadlifting and squatting again. Much better now.
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I like to ask other doctors who they would go to. The guy who did my shoulder is infamous for being an arrogant prick. He and I got along just fine. I don't need my hand held, I needed competence, and then some. He had that in spades.
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Had c5,c6,c7 fused ten years ago. Surgery was easy and was back to 100% in six weeks. I was having a lot of hand and arm pain and numbness . No more pain after surgery. If you are having constant pain or numbness in your arm or hand don't wait to long or you could end up with permanent nerve damage. Just make sure you have the right doctor.
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This summer I had neck surgery (disc removed, vertebra fused and a dead persons disk put in there) to eliminate the tingling and numbness in my arm. Surgery was easy. Did not get enough morphine the first night so it sucked very much. Recovery was pretty fast but make sure if you have nerve pain you get steroids ASAP. I suffered for 5 days before I figured out that no amount of ibuprofen and narco would work. After that it was just slowing getting better until the last 3 months no pain what so ever.
I'd do it just to get it over with. Life is better without that maddening tingle
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well BoBby... you're on your way.
Get er' done and see you post "shot" on that Big Foote ;D
Forget about CCBC.... that's the last thing you need to do to your neck, arms, yada yada.... lay down in June, and hang with me on "the Boat" for CCBC... it's good fun and a lot easier the next day ;D
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Those are exactly the issues I'm having. Constant pain and weakness in my left arm, pins and needles on the right from the shoulder to my fingers comes and goes depending on neck position. It's mostly c5/c6 but c6/c7 is shaky too. Glad to hear you had good results. I'm still hoping it ends up being unnecessary but based on his comments it likely will be required.
Post shot nothing, I'm getting that next Wednesday... I'm going out Saturday, probably stay local south shore. I was just glad to hear him say I wasn't in danger of doing more damage than if it was normal.
This is the doc I'm seeing.
http://newenglandorthoandspine.com/parazin.aspx
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I'd love to hang out on the boat but Sue says she gets to order me around on the ground. Gonna have to work on that....still hoping to paddle though if the surgery doesn't happen.
Just realized my doc looks like a slightly younger version of you.... :)
(http://newenglandorthoandspine.com/images/carknerparazin1.jpg)
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Appointment with my other doc on the 18th. This was to be just a typical 2 year check on my head but I've told him about the cyst and we'll review the films. I trust his opinion more than anyone. I don't think he would be the one to take care of it but he'll point me in the right direction. I'm really hoping that some of the problems I'm having are from the cyst. The damn thing is the size of a 5 year old's hand.
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Disc surgery? No. But it's starting to crop up as an option - unfortunately.
In my early 20's I was framing a house in Malibu and took a free fall backwards off of an upper floor. Total distance was about 15 feet. Half way through the fall the only thing I hit was the back crook of my neck on an open floor joist about 8 feet down. Massively whiplashed as I fell the rest of the way to the dirt crawl space below.
Saw stars but didn't black out. Got up when I could tell all seemed to be working, went home and rested, then went back to work a couple days later.
Was a testament to youth I suppose. Living on the beach, I was in great shape and had been surfing day in and day out since I was fourteen. That, and swinging a hammer all day long for years. Dumb, since I went back to work without seeing a doctor of some kind, but then I didn't know any better and the contractor never suggested it.
I was fine for almost 9 months until one afternoon when I grabbed my board and while checking the wave, stepped off a step 7 inches from the sand. I twisted a little bit. but whatever, no biggie. Next morning when I woke and went to get up I got jolts of pain like nothing I'd ever imagined. Couldn't move without going into massive spasms.
A friend came over and took me to her chiropractor (who happened to be blind). He worked on me and within 3 days it was like nothing had ever happened.
Problem was though that my life has never been the same since. For the last 50 years or so I've had to deal with my back - neck and lower - 'going out' without any seeming reason. It's just become a part of my life. When I was fine, I was great. No impairment whatsoever. I've surfed, sailed, climbed, biked, rowed, paddled etc., all these years. Have managed to keep strong and to my fighting weight - same now as I was when I was in my late teens. However, at any moment, any time without warning my back will go south on me. X-rays have always shown no bony injury so my issues have been exclusively muscular / ligamental.
My key to managing the episodes - some mild, some excruciatingly painful and debilitating - has been chiropractic and deep tissue work. Can't even begin to express how fortunate I've been to have these modalities work as well as they have throughout all these years.
Fast forward to a few years ago when out of the blue I started noticing a rather mild sense of tingling / numbness in my toes of both feet when I was walking. It came and went and was simply a curiosity for me since it was so mild, fleeting and never impacted me in any way adversely. That is, until about 3 months ago when I was being worked on my a masseuse. She had worked her way to my upper hamstring and WHAM, she inadvertently hit what could only have been my sciatic nerve. It lit me up like nothing I'd ever experienced; much like if I'd grabbed a hold of a high voltage line. That massive shot of pain jolted all the way down my leg into the bottom of my right foot. That said, it started to subside immediately and was gone within 5 minutes or so.
That night I woke up just before dawn and that tingling numbing sensation that had been quite mild, transitory and only out in my toes, was now quite strong and covered the whole bottom of my right foot. Within a month it had moved to both feet and in a couple of months was everywhere except above my neck. When I tilt my head forward my whole body feels as if I I'm hooked up to a low voltage battery - more or less like a TENS machine without the pulsing, just steady and constant. No pain, just an all encompassing electrical current surging though out. Bizarre.
Since then it's remained more or less constant 24/7.
About a month ago i told my doctor to schedule me an MRI and a set of x-rays, the results of which concern C4 thru C6 and then L2 thru S1 -disk bulging, moderate to severe degeneration, stenosis, nerve impingement, etc.
While I'm seriously concerned about the ramifications of what the scans are showing relative to my history of back pain along with the fact I'm getting older, the thing that's driving me crazy at the moment is this constant issue with my feet. It never stops - heavy tingling, electrical charge, numbness like I'm walking on layers of uneven gauze. it really sucks.
Will be meeting with a PM&R Specialist this coming week.
Regarding this 'heavy tingling, electrical charge, numbness' constant and throughout most of my body. Has anyone here experienced this?
Sorry for the long post but this is messing with my life in a huge way and unlike prior history, is not responding to bodywork, exercise, stretching etc.
Any feedback would be greatly appreciated.
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Sterbo,
IMO you need to take immediate action and find out if surgery is called for. You're facing potential permanent nerve damage. You may have stenosis, bone spurs, or disc damage, or all the above. If you allow the nerve problems you're having to continue you may sustain permanent nerve damage. I'm not a doctor but I am fused at c5, c6, c7, and t7,t8, and L4,L5, S1. Three separate successful surgeries that eliminated my nerve problems. These surgeries were all done in a timely manner. Find a good surgeon, very important!! Surgery is a last resort, sometimes! Sometimes it is the only real option. Just my opinion, but I have been through it three times.
Easy
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easy -
Loud and clear. Thanks for the feedback.
And yes, based on the last round of scans, I do have rather extensive stenosis, a few disc protrusions, arthritis, and nerve impingement. No bone spurs.
I had a steroidal injection late last year which didn't help. Rather, the cortisone wreaked havoc with my nervous system for a week. That sucked.
I'm seeing a specialist day after tomorrow.
You've had three surgeries? Any advice on the pros and cons etc?
stoneaxe -
You say "Constant pain and weakness in my left arm, pins and needles on the right from the shoulder to my fingers comes and goes depending on neck position."
Can you describe the pain for us? How does the 'weakness' manifest? Once this all started for you, did you experience right off, those symptoms or did they slowly creep up on you over time?
Pretty scary stuff, all this...
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I've come somewhat full circle on this. Saw a wide mix of doctors, the next to last being the neurosurgeon that did my head in 2009. Then we went to see the neurosurgeon that taught him and who's specialty is he neck and back. They went back through all my films. I have yearly MRI's of my head going back to 2003 and he showed me that the cyst has been there a long time, is smaller than I previously had been told and hasn't changed so it's unlikely to be causing any issues. He said it has likely been there since I blew out the disc long ago. He also said the current state of my neck doesn't warrant surgery and suggested I continue the low dose ant-inflammatory (which seems to be helping) and go see a Physical Doctor to do therapy. I have yet to see the physical doc but I've already seen significant improvement just by taking the anti-inflammatory, wearing a cervical collar to bed on occasion, and some yoga. Very happy to avoid surgery as long as possible so long as I'm not doing any damage and they didn't think there was danger of that.
The pain I feel is a sharp and mostly concentrated in the elbow and shoulder. My left arm is the weakest. I lost almost all use of it when the disc blew out 20 years ago. Up until 9 or so months ago it was all OK though. I had probably 90% of my strength in my left arm and none of the pins and needles. It came on slowly, got worse to where it was causing issues. Right now its close to being back at the level it was prior to this flare up. Some slight additional weakness in my left and a dull ache but manageable. Hopefully some more therapy will help further.
Good luck Sterbo, this definitely sucks, hope it works out.
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Many thanks axe
It's extraordinary really. I've spent close to 70 years active on all fronts. The fall and subsequent 50 years of dealing with my back, while harsh, has always been manageable.
I guess because I found a way to navigate those shoals and rock and roll all this time I've never had, or needed? a reality check until now - that WTF - I'm getting older.
It's a bizarre concept really. Don't want to give it credence on one hand but I'm a logical creature on the other.
I mean, wow, is it really possible that I can't go hundreds of years feeling like a kid? I have up until this year so what the fuck happened?
:sigh:
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I haven't had the surgery, but it was recommended by my spinal specialist (Fusion by one, replacement by another, wait and see by another due to my age and activity level). I broke my back about 6 years ago and have had problems since then. Had all the usual numbness/tingling/range of motion loss/constant pain/etc. My L3/L4/L5/S1 are pretty much flat now with lots of nerve root impingement. I chose not to use narcotics and tried all the various nerve meds but they only provided mild help. Too many epidurals and facet injections to count. RF Denervation helped for a while. <---AKA lightening bolts when they get it wrong
Staying fit (I used to be a gym rat) helped a lot, but after my last round of PT the therapist and treating doctor advised against lifting anything more than 25lbs due to the deterioration on my lower vertebrae. Now I use SUP/SUS as my fitness regime-actually a main reason for starting SUPing. The pain is constant but applying the yoga type workouts from PT and SUPing/SUSing keeps things somewhat in check. If it didn't suck so bad it would be comical. I look like an infant trying to roll over every morning when I get out of bed.
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Simply anecdotal but I had the tingly hands and pain down the arm about a decade ago. Rather than go to an orthopod, I bought a cervical collar ..the real one with a chin rest, trach hole and tall back. Ahhhhh... I would wear it in the evenings. There's nothing like taking a load off. It seemed to allow me to relax and get some relief. I have kept it, but not needed it.
Jim
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I'm going to get one that is more substantial than the foam one I have. I think it definitely helps but the foam one can restrict breathing. I've woken up a couple times in the middle of the night feeling like I was being strangled.
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I used to have my hands and fingers go numb in the weeks after a car racing weekend. Then on the recommendation of a doctor I race against I tightened up the restraint on my Hans device. I can't turn my head much without swinging my body, and once I'm belted into my six point harness I'm pretty much only looking straight ahead, but no numb hands!
And all my competitors look to see my eyes in the mirrors before they try something daring on the inside. Sometimes a handicap is an advantage.
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I used to have my hands and fingers go numb in the weeks after a car racing weekend. Then on the recommendation of a doctor I race against I tightened up the restraint on my Hans device.
Is that anything like a 'Hans Free' device?
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When I tilt my head forward my whole body feels as if I I'm hooked up to a low voltage battery - more or less like a TENS machine without the pulsing, just steady and constant. No pain, just an all encompassing electrical current surging though out. Bizarre.
That sounds like L’HERMITTE’S sign.
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When I tilt my head forward my whole body feels as if I I'm hooked up to a low voltage battery - more or less like a TENS machine without the pulsing, just steady and constant. No pain, just an all encompassing electrical current surging though out. Bizarre.
That sounds like L’HERMITTE’S sign.
Thanks Admin
As you know, L'hermitte's Phenomenon is simply a sign that something may be damaging the spinal cord.
Typically there are 6 or 7 reasons. In my case the initial fall, injury, subsequent decades of repeated trauma and aging have resulted in a rather clear picture.
It's worth noting that L'hermitte's typically describes the 'electrical charge' induced by forward bending of the neck as being momentary. In my case it remains fully charged as long as I maintain that position. Additionally, it's analogous to a rheostat: when my neck is in it's normal erect posture the 'electrical current' is constant throughout my whole body - the only exception being from my neck up. When I tilt my head forward it's like ratcheting up the Stat, the impulse is still constant but increased as long as I hold that position.
The other day I met with a PM&R specialist at Kaiser who showed me the 3d modeling of the MRI I had a few weeks ago. It was a brutal reality check. Starting at C1 and moving through C3 I could see perfectly healthy discs and spinal column representation. When he moved into and through C4 thru C6 we could no longer make out my spinal cord, the stenosis being so pronounced.
He then put me thru a battery of tests - reflex, balance, strength, pain. So far that's the good news. Reflexes were mostly good. Balance was good. Strength was good. Pain was so-so.
Bad news? He was adamant that some kind of surgery is not a matter of if, but rather when.
Further bad news? Said that I need to be seriously on my game so as not to take any kind of fall. Made it clear that should I trip and go down or whatever variation of that theme I could easily end up paralyzed to one degree or another.
Told me that he wants to be as cautious and thorough as possible before we make a decision as to how best to proceed. To that end he's referred me to specialists in both Neurology and Orthopedic Surgery for consults.
One step at a time.
Pretty stressed out right now. I'm so grateful for the feedback you guys have provided me.
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I don't quite understand the term Stenosis used here. It generally means narrowing.
That's a tough place for injury, though somewhat common. Some kind of whiplash? Since it is fairly common and more accessible than either higher or lower vertebrae you'd have a much better chance for success from the surgery.
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I don't quite understand the term Stenosis used here. It generally means narrowing.
Yes, among other aspects of stenosis it means exactly that. Seems that the fall I took along with repeated trauma over decades along with the aging process has caused that area of my spinal column to suffer significant degeneration and ligamental / bony structure impingement into the spinal canal thereby compressing and impairing the nerves of my spinal cord. Ergo, the endless numbness / tingling / electrical current sensations.
That's a tough place for injury, though somewhat common. Some kind of whiplash?
If I remember correctly, you have construction experience. Visualize this -
I was a 22 year old carpenter in Malibu. My little brother and I were carrying a 20 foot beam from the site up onto the framed and sheeted floor of the house we were building. The floor was a little over 12" above grade.
I was the one walking backwards. Once I had stepped up and was on the sheeted floor I continued to walk backwards. When by brother got to the point where he needed to step up, I concentrated on 'the pull' to give him the momentum he need to step up and onto the floor too.
What I forgot about, while concentrating on the need to pull, was that behind me there was an open space where eventually there would be a six foot stair down the the dropped floor area below. That was simply a hole since we hadn't yet framed any kind of steps etc. The floor below hadn't been sheeted so was still as series of open floor joists. As I took another step back I free fell backwards into the opening. Falling backwards my body was almost horizontal at 6 feet down. At that point the back of my neck - C4 thru C6 area - impacted the first open joist. I massively whiplashed my neck as I continued to free fall another 7 or 8 feet to the dirt crawl space.
Didn't loose consciousness but was severely stunned.
I was in great shape from all the years of every day surfing and youth being what is is I went home but came back to work two days later.
So yea, - whiplash :(
Since it is fairly common and more accessible than either higher or lower vertebrae you'd have a much better chance for success from the surgery.
I hope so. The MRI of that area was awful to look at. Next up are the consults with specialists in Neurology and Orthopedic Surgery.
Thanks for the feedback Bill
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Ugh. Been there, done something similar. The injuries we ignored in our youth are all waiting for the reunion.
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Sorry to hear that you are dealing with this Sterbo. Does activity turn up the Rheostat (with or without head lowering)? SUP. Walking, etc?
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No, activity doesn't dial it up. Curious as to what you're thinking regarding that question.
The Doc said that the fact that tilting my head (even gently) down, does cause the charge to increase is a very bad sign which is why, in part, he's so concerned that I figure out as quickly as possible how best to proceed.
I sometimes wonder about the paddling only insofar as my feet are concerned. The numbness, etc. charge etc. is more intense there and I don's suppose that standing on a board paddling distance is helping. But, I can't say that it's problematic either. For example, I went for a couple of weeks about a month ago whereby I didn't paddle at all.
I had a bad cold for 5 days and then the wind here decided to go into an unusual pattern by kicking up very early and blowing extremely hard until very late. That said, I took notice that the two weeks forced inactivity on the water made no difference to the intensity in my feet - or anywhere else for that matter.
Can't tell you how happy that's made me. I've been on pins and needles (pun intended) thinking that one doctor or another would, when I told them I'm a rather hard core paddler, tell me to stop. Instead, they've all said to go for it.
I don't even want to begin to think about how screwed up and depressing it would be if I couldn't get out on the water.
Knock on wood...
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No, activity doesn't dial it up. Curious as to what you're thinking regarding that question.
Hi Sterbo,
I am just comparing notes. We are brothers in current. The Tesla brothers :). What you had written about head position struck a chord (apologies for that). I have no answers for you, unfortunately, and am also just learning here from others who have, or have had, similar situations.
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Head position for me when the tingling happens is everything. If my hand is numb I can tilt my head forward or pull up on my head with my hands and it goes away.
I'm pretty sure I did my damage in a water skiing accident when I was 17 and trying to impress my future wife. Came in screaming towards the beach on a whip intending to spray her, realized I was about to hit bottom with my friends brand new competition Taperflex which I could not afford to replace so I stepped out of the ski. I took three huge strides doing about 50 mph then lost my balance and flew another 20' while somersaulting and landed on my head/neck on the sand. bizarrely it flipped me right back up onto my feet and I took another few steps to stop myself. Being 17 and in top shape is pretty amazing...I had no real damage despite having created a wide deep crater in the sand with my head. Other than a couple of cuts on the back of my head and neck from clam shells I was fine....took my next turns skiing...and sprayed her successfully the second time.... ;D
My disc blew out when I turned my head walking down some stairs 20+ years later.
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Stoney sorry to hear of your pain…I had years of back issues and was pain free up until 2 weeks ago when I tweaked it on some gutless 2 ft slop. Wasn't that bad a tweak, but brought back nightmares of 10 years ago and beyond.
I know you have heard all the advice on stretching etc, but have you thought of an inversion table? you might want to give one a try.
Last week I bought a Tweeter Hang Ups inversion table and it has been really good for my back so far and my pinched back feels 90% better. I'm no doctor , but this seems to work for me. It stretches the back and elongates the spine bringing relief to tight, pinched areas of the back. I can't believe how much better I feel after 10 mins of hanging in this thing..maybe you can try one out before buying. I was doing all the stretching etc for 2 weeks and they offered some relief, but the table offered almost IMMEDIATE relief.
Right now the model I bought is on sale on Amazon $299 free shipping (that's great they are heavy) link is below.
http://www.amazon.com/gp/product/B008054PFI/ref=s9_simh_gw_p200_d0_i5?pf_rd_m=ATVPDKIKX0DER&pf_rd_s=desktop-1&pf_rd_r=117P8KRY65BFGYTVR482&pf_rd_t=36701&pf_rd_p=2079475242&pf_rd_i=desktop
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Just by way of one man's experience, inversion, (table or no table) has not only not worked for me but seemed to always aggravate the condition. I'm speaking Cervical specific here.
That said, while I wouldn't recommend going out and making a purchase, I'd agree that it's worth trying. Perhaps a local gym or...
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I totally agree try before you buy. I was pretty sure it would work for me because many of the exercises or stretches that would relieve my back pain were when my legs were up in the air and weight off my feet. I know it isn't for everybody, but many , many people swear by this .
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bot a hang up a few yrs ago, used it for a while with no notable positive effect, possible neg effect. it gathered dust in my basement until i overheard a colleague researching. i gave it to him. his gilrfriend tried it. it now gathers dust in his basement.
but yeah, there are many who swear by them, so if it's helping you, stick with it, carib.
when i am doing yoga 2-3 times per week, all feels better.
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Head position for me when the tingling happens is everything. If my hand is numb I can tilt my head forward or pull up on my head with my hands and it goes away.
I'm pretty sure I did my damage in a water skiing accident when I was 17 and trying to impress my future wife. Came in screaming towards the beach on a whip intending to spray her, realized I was about to hit bottom with my friends brand new competition Taperflex which I could not afford to replace so I stepped out of the ski. I took three huge strides doing about 50 mph then lost my balance and flew another 20' while somersaulting and landed on my head/neck on the sand. bizarrely it flipped me right back up onto my feet and I took another few steps to stop myself. Being 17 and in top shape is pretty amazing...I had no real damage despite having created a wide deep crater in the sand with my head. Other than a couple of cuts on the back of my head and neck from clam shells I was fine....took my next turns skiing...and sprayed her successfully the second time.... ;D
My disc blew out when I turned my head walking down some stairs 20+ years later.
Stony
Ha, great description / visuals, that.
While your and my incidents were completely different it's a bit eerie how similar they are from a standpoint of age when they happened, our chronological age, and the fact that we're both hardcore watermen. And now all these years later and, at least for me a wake up call I never thought I'd have - "The injuries we ignored in our youth are all waiting for the reunion" - as Pono so aptly said.
Anyway, thanks again for that. I'll read it again from time to time as a great heads up reminder of past times good and bad...
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This has been the most valuable thread on the Zone for me. It lead to my going for an initial MRI (followed by another two) which resulted in my Multiple Sclerosis diagnosis last week. After a dozen years of nerve harassment, loss of coordination and degradation a massive personal puzzle has been solved. I am so relieved and happy to know.
Thanks to all of you guys for sharing your experiences here. This has helped me immensely.
Rand
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Admin
That's a hard knock. Good news I assume in that at least you know what you're dealing with.
How pronounced is it and where do you go from here?
All the best brother...
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Yup, I'm a bit horrified and sad about the whole deal, but don't expect any slack on the downwinders, or any make-a-wishy crap. I'm taking full advantage.
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Hi Sterbo,
The first MRI showed a group of demyelinating lesions in my cervical spinal chord that were consistent with M.S. in shape, size and location. That first one was a cervical spine MRI without contrast. They transferred me to a neurologist who ordered two more MRI's specific to MS. They ran the cervical spine again with and without contrast and a brain MRI the same way. The brain MRI showed an additional group "exceeding 20 lesions". These were in my Corpus Colossum, abbutting the ventricles and near the cortex. These are the common areas where MS lesions appear in the brain. The lesions are both right and left in both my brain and my spine. I have learned that it takes 2 lesions in different areas of the central nervous system that occurred at separate times to diagnose MS. The clinical tests and my history were both also consistent with MS.
I went in because, much like yourself, I thought that I might be beginning to paralyze myself with all of this stuff that we all do to make our lives great (windsurfing, mountain biking, snowboarding, SUP, etc.). The loss of feeling in my legs had increased and when fully physically exerted I began losing control of my right leg. Then my arms and hands got in on the numbness (particularly my right which is very heavy feeling) and the electric head hang issue that we mentioned earlier developed. I was really expecting them to say that I had damaged my spine due to my long term participation in all of these activities, but of course that was not the case.
The upside is that i am in the best cardio shape of my life and in that regard I feel very strong and capable. That can only help. There is a lot of research being done right now and I am very hopeful in that respect.
I am sailing, biking and SUPing most days. The boom, harness and footstraps makes windsurfing pretty nearly normal, Mountain biking with clipless pedals is good too. SUP in flatwater is fine for 45 minutes with breaks to stay cool and take dips. Downwinders are harder but are still very fun. I start strong but as I get heated up it all goes sideways. I can't move around on the board at all after 30 minutes so that adds to the challenge. My group is very patient. :)
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:o ::)
Hmmm. there isn't a good one for sticking your tongue out.
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Sorry to hear Boss.. "dozen years of nerve harassment, loss of coordination and degradation" What is Nerve Harassment? ... is there a 'time of day' ..temperatures ..or some other triggers? Looking back, could you see an early marker?
I don't like the sound of 'research' ...a physicist friend who's designed satellites with a brain off the scale - has had to do his own research for his Myasthenia Graves, which I gather may have similarities. A real struggle for the last 7yrs. but he's a bulldog. Good luck. Press on.
Jim
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That's a big pill to swallow. I'm glad you're staying positive. Find what keeps the stoke, and relish it.
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Shit!....that sucks. Like talldude said that has to be a tough one to hear.
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Thanks a lot guys.
is there a 'time of day' ..temperatures ..or some other triggers? Looking back, could you see an early marker?
There were a lot of signs along the way. MS has a great sense of humor. In its relapsing remitting form (most MS inductees start with this form) the defining feature is that symptoms pop up, then level off or subside, either partially or completely. It is an autoimmune disease that tricks your immune system into attacking healthy cells - in the case of MS it goes after nerve cells in the brain and spinal chord. Any system or function that nerves control is a potential target. The Myelin in healthy nerve cells keeps signals flying along at the correct (fast) speeds. MS strips that Myelin off of the cells and without it, signals are slowed. My doctor uses the wire analogy for nerves with the Myelin being the wire coating. Without the coating either heat or a surplus of signals will cause a malfunction. Overloading the wires can also temporarily activate otherwise inactive previous symptoms. PARTY! For activity, they now suggest avoiding hotter times of day or overdoing it as both internal heat generated from working out and external heat from the day itself will overload the wiring. In the 90's they suggested no exercise at all, but that has been modified due to the greater good noticed from a healthy lifestyle. I wouldn't have stopped having fun anyways because what the hell would I be saving myself for? Canasta?
MS is progressive, but no one knows what course it will take, or at what speed. My goal is to stay physically strong through exercise and diet because those are things that i can do. I had already taken steps on both of those things beginning a few years ago. I knew something was way off but I didn't know what. It is much better for me to know. Something to face.
Thanks again.
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Re: M.S. A good friend of ours just landed in Israel to get a auto immune reboot (best description I have heard). She has had ms for 20yrs so she almost did not qualify. She walks with a cane but is pretty disabled. The procedure apparently stops the disease in its tracks. One of those things that the fad hasn't gotten around to approving.
Happy to keep you in the loop……she starts treatment this week. private msg me if you would like.
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This has been the most valuable thread on the Zone for me.
You have really created a special place here and I would have to guess when you went about starting it you wouldn't have even imagined a thread like this popping up on it along with many others floating around here. I hope and wish the best for you.
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After checking back in with this very informative thread, this latest turn has knocked me back in my chair. My neck pains are suddenly just a few peanuts.
Randy, thank you for your courage in sharing with us. It is bound to help others on here.
I wish you the best outcome and strength in the road ahead.
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i am upset. you have created a healthy place for many, including me. seems terribly unfair.
glad to hear you are facing it down. hope progression is uniquely slow, and quality research/results move quickly.
good luck to you. you have a crew of good folks here, rooting for you.
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In the 90's they suggested no exercise at all, but that has been modified due to the greater good noticed from a healthy lifestyle. I wouldn't have stopped having fun anyways because what the hell would I be saving myself for? Canasta?
MS is progressive, but no one knows what course it will take, or at what speed. My goal is to stay physically strong through exercise and diet because those are things that i can do. I had already taken steps on both of those things beginning a few years ago. I knew something was way off but I didn't know what. It is much better for me to know. Something to face.
Thanks again.
If you want verification that you made the right choice about having fun and staying physical, here are a couple of links from a friend of mine who made the right decision about that several years ago when he was diagnosed with Muscular Distrophy.
http://ryanlevinson.com/BLOG/
http://www.ryanlevinson.com/%28Home%29.html
He is currently in the French Polynesians with his wife on their 38 ft sailboat. They left here last summer, wintered in Baja and mainland Mexico and are relaxing after their south seas first leg.
p.s. I met him here on the Forum
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Hi guys,
Thanks for that additional info and the links.
Ryan has a great outlook. I know for myself that being active (having fun) emphasizes everything that is working. It makes me feel strong and capable. Doing nothing does exactly the opposite. That is likely the same for all of us on the forum. Wake up and load the car. Same as it ever was.
I am starting on a drug that might help with the friendly fire tendencies of my immune system. With luck that will slow or stop new lesions from occurring if I am still in that stage. After that I will start on Biotin (B-7) which is showing signs in studies of halting advancement/degradation (and in some instances offering improvement) in people who have already transitioned to the progressive form of MS (or started there). The thought is to first try to patch the leak then set to bailing.
Thanks again for your thoughts and suggestions
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So, I find myself currently facing major surgery.
Multi level Laminoplasty, to correct deterioration, severe stenosis etc. - C4 -5, C5 -6 & C7.
Have had full spine MRI's, X-Rays, EMG, etc.
Consults with my Primary, two Senior Neurologists, PM&R Specialist and Orthopedic Surgeon.
Consensus by all = Multi Level Open Door Laminoplasty.
This within the Kaiser Group ecosystem.
Next week I'll have a consult with a Neurosurgeon to balance that with the Orthopedic.
Given the repeated cautions and warnings by all of the above, the path seems pretty darn clear. They all say surgery is not a matter of if, but rather, when.
They all say the longer I wait the more I jeopardize my current good health - my spine issues notwithstanding.
A car accident, or unexpected tumble and fall = quite possible partial or full paralysis.
Wait and see how things go? Again, they all say the same thing; balance, reflex, motor function deterioration will occur - not a matter of if, but a matter of how fast and to what degree. In this latter case the timing of the surgery seems to be the key since I'm told that whatever has gone south up to that point in time may not be remedied by the surgery.
As of this moment I'm still healthy and strong, can get out there and rock and roll.
If tomorrow, next week or month my fingers, hands, arms, legs, feet, etc., start to fail because I've waited, I may or may not ever get those things back.
Mack the Knife looms again after all these glorious years...
:sigh:
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Hope it turns out well for you sterbo. I've dodged the surgery bullet for the moment and things seem to be getting better with therapy. Very happy for that, hate the thought of someone messing with my spine.
Heal well and get back at it.
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Thanks stoney
Means a lot just knowing others out there who share my love affair with the sea can relate. These latest events have come on like squalls that seems so distant but kick ass just as we're dropping the outer jibs - no mercy.
I find myself waking up at night, the reality check that it's really real; then merciful dream land - all things beautifully wet and wild, wind, sea, sand and surf. As long as the gulls cry, and days and nights bring the sound of that endless pounding on the beach I'll know all's well...
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Wow Randy... the "disc surgery thread" was out of my realm.... till I heard about your diagnosis. Crap, that sucks, plain and simple.
Life is what we get, and facing it head on, as you are, is the only real course.
I wish you the best, and suspect you will continue to live life with all vigor!
sterbo.... be diligent and proactive with your Doctors.... expect the best results.
I hope all goes well for you!