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Extreme cases of DDD and Kyphosis

Started by spinelessinalberta on 03/30/2012 11:28pm

I am a 50 year old male residing in Linden,AB,Canada,diagnosed 5/16/2011 with severe(total spinal involvement)DDD,kyphosis and severe osteoarthritic changes throughout my spinal column.Up until 3/11/12 I was at a level of 75% functional capacity.On that day,I suffered the 1st of a number of drastic changes I was about 2 undergo over the next 3 weeks.On the eleventh I entered hospital as I was no longer able 2 ingest anything solid without excruciating pain in my upper left gastro-intestinal area.1 week later,the shooting pain I had in my arms and legs began 2 morph into a totally different kind of pain.Replacing the shooting pain was 1 of much deeper origin,like it was radiating out from my bones.It has seemed 2 have come 2 a crawl now as far as increases and changes in location,but I am now at 25% or less functional capacity.I need a cane 2 walk short distances,but if I want 2 go shopping 4 instance,i need the walker.Pain levels remain steady at 5-9/10 depending on activity level.Any activity whatsoever is painful somehow.I can't be out of bed 4 more than 15 minutes and the beast awakens.My question I would like 2 pose 4 discussion is;Has anyone the knowledge as to how I can research severe cases of the former 2 maladies I mentioned?I am currently working with 2 physiatrists and my family physician 2 find more like cases 2 mine,maybe we can glean some kind of information that might assist doctors and I 2 come 2 a suitable treatment protocol.Paul S. Pedersen (spinelessinalberta)

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Well,alot has changed since my last post here,and the trend continues.Now my marriage of 22 years is over.We can no longer co-exist as partners as our needs as individuals have changed drastically over the last few months with the dramatic slide in my health and her health issues as well.The symptoms of our 2 diseases vary greatly,making our co-habitation no longer beneficial 2 either partner.this event will not affect my relationship with her,we have 5 children & 4 grandchildren and this will not affect my relationships with any of them now or in the future.As far as my physical condition is concerned,the DDD+K continue 2 debilitate me on a daily basis,I now have enlisted the aid of a chiropractor with 50 years experience.I asked him 4 my own curiosity how many spines he has seen,he agreed it's in the 10's of thousands.compassion is his #1 concern,& he & I will attempt 2 alleviate the worst of my afflictions so that I can cope with the pain & discomfort still 2 come.I will continue 2 post as I figure,the right person reads this & I will be able 2 finally discuss the rigors of the disease that is my own burden now.spinelessinalberta :)

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i am not aware of any1 posting on my support group as of yet,but i will be vigilant in my search 4 like cases 2 mine.i have had an epiphony 2day,as it is Easter,& i have opened my heart 2 our Lord,Jesus Christ as of 2day,& i got the reception i was expecting!i now have Him fighting alongside me in this never-ending battle with pain,1 the devil has created,taking advantage of me in my weakened mental & physical state 2 distract me from my true calling & spirituality.i now am very confident that this battle i may not win in this physical realm,but i am secure in the knowledge that my place is secured in His Kingdom,4 ever & ever.all i wish 2 do by accessing this site is 2 reach out 2 fellow sufferers of these malevolent back maladies that plague our everyday lives seemingly w/out end.i'm not sure exactly what i can offer u,fellow sufferer,other than some comforting words of encouragement from my humble self.spinelessinalberta :)

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2 rene & i'm in pain.u are not alone,there are thousands of us sufferers out there that live 24/7 with pain & some of us do have a difficult time with all the pain meds & trying 2 convince people,yes. i really do need all of those!i was in the spine clinic 2day 4 test shots 2 see if i am a candidate 4 oblation therapy.i apologize 2 all back sufferers in reach of this,because i sharply rebuked another gent @ the clinic as all he could do was whine & complain about how his 2 discs are killing him & he did not know how much more he could take be4 he was gonna give up.i could take no more,as i am suffering TOTAL & RAPID spinal degeneration + kyphosis & if he didn't stop complaining,i would trade spines with him in a new york minute & if he was not satisfied with his care,there's a vet clinic down the street,they are currently taking new patients!now i have held my tongue thru this entire 2.5 yrs of miserable pain,but i am no longer willing 2 tolerate these whiners!my whole spine is involved,i try 2 keep this 2 myself til my grunting & constant shifting position gives me away,then i calmly explain & sit & watch the look of horror slowly come across their faces,i'ts hilarious!i can't bear these people anymore!1 of the nurses thanked me when i was finished as he has caused them nothing but grief!spinelessinalberta :)

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Hi Paul. My story is somewhat similar as I can only walk short distances when I'm able which isn't everyday. I tried the Rollater walker twice and the sidewalks are just too bad in this area. I injured my back 4 years ago due to stressful job and physical bending lifting and twisting and had a herniated disc which turned into DDD and I have kyphosis and neck issues also.

I have tried inferential treatments at the Chiropractor but won't get any adjustments done. I find the treatments take down the inflammation in my lower back and I was walking a lot more last summer so I will start them up again as I only get so much with insurance for treatments.

I also started doing some exercises for DDD laying on the floor with knees bent and trying to pull navel toward the spine and also try to hold my stomach in while sitting and sometimes standing and walking and find it gives me some stability and relief of pain. Also doing the march with both legs in same position laying down and gently lifting my legs and also sitting in a dog position and wagging the tail not stiffly or hard just gentle rocking and find it's helping me but ask your Dr. if any exercise like that will help.

Sorry to hear about your health issues and your marriage chronic pain is awful and it's been a strain with mine also. My husband does all the shopping and cooking but doesn't really know how to clean which is an issue. Anyways hope you find ways to get the pain level down soon. Take care. Cheryl

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It is a pleasure & a privilege 2 be speaking with you,Cheryl,but you are the 1st person 2 respond 2 me that has anything remotely similar 2 my affliction.the case I have is 1 for the books,apparently.i now have 1 neurosurgeon,2 pain specialists & my family physician trying 2 find a similar case with this level of destruction & spinal involvement.my K is just coming in2 full bloom,now,according 2 a chiro in Red Deer,Alberta,near my home,well 150 kms anyway,that is willing 2 take me on & try 2 help me in anyway he possibly can,including slow chiro manipulation.i am alot better,thanx,mentally,physically & now spiritually as Our Lord,Jesus Christ welcomed me back in2 His Kingdom on Easter Sunday!the pain is wholly different now,& i must just be patient with my wife,as there is always hope.the swimming pool isstill the best relief i can get,next 2 this patch(u might wanna talk 2 doc about it!)Butrans 10-7 day change.Buprenorphine is the drug. :)

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it may prove beneficial,and maybe not.i'm told this DDD+K thing in combo is rare,& 2 have mine is virtually impossible!i've had 4 docs,including my family gp,ask the same thing.how in the heck are you still walking?i don't know anything about miracles,but i am now not averse 2 them!i hope we can continue 2 correspond,as i now have alot of time 2 fill,but this disease is sure trying 2 distract an awful lot.as far as future,i have 0 idea!neither do any of the docs,hahaha.i'm in the middle of another facet injection protocol,the 1st 2 appts were test shots,2 see if i am a candidate 4 oblation therapy,i don't like the sound of that,the word oblate means 2 kill,they tell me the nerves might grow back,but with this level of destruction,i doubt it.anyway,i just keep going regardless,as i have only 1 body!i'm gonna get in2 journalism,The Lord tells me the time is right 4 a change,so,HERE GOES!!!wish me luck,as i do 2 you,Cheryl.be well & don't let the pain get 2 u,ur stronger than that!!!!!! spinelessinalberta :) JUST KEEP SMILIN"

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Sorry about what you have been going through the last year. It is good to know that you have found a bit of relief with some patches and meds. The Lord only gives us we can handle. He knows the pain you are going through but he sees something else for you. I'm happy you have gained spiritual growth and a pleasure calmness about yourself. I believe you have learned that this is something that has happened to you and you have to work on keeping going. My neurosurgeon suggested I started an injection to help the DDD pain I have. I informed my doctor that I am against being awake for these because of the sensitivity I have about my back. He told me that I will be sedated. Can you provide me some of your reactions or experiences regarding the injections and if you have felt they helped you relieve some of the pain? Keep us updated about your progress.

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Hi Great to hear about you new faith in the Lord and He's helping you through this. I hope to get ablation also at the new Pain Management Dr when I go next week for the first time. Sorry I would've replied sooner but didn't get an email when you posted only when the other poster sent a message. I belong to chronic pain site.com and Spine Health forums so spend a lot of time there. Take care. Cheryl

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Lenisha;thanx 4 your words & prayers of encouragement.yesterday was family doc day again,1 of my faves cause he's almost 1/2 my age,lol,we have a great rapport now,though as this entire adventure has been nothing but a valuable learning experience 4 the both of us.i learned,2,that i have now lost more than 2 inches in height!i gotta keep a close eye & a detailed journal as there are NO OTHER cases 2 compare me 2,all new data.it's kind of exciting being a part of the future of medicine & how 2 better treat cases like mine,but i must also fulfill a responsibility 2 the public @ large 2 better our knowledge in this complex field of spine maladies.Jesus also,has something in mind 4 me,but i must be patient,as The Lord tells me i have more info forthcoming.facet injections 4 me had a temp effect,exactly 21 days,they took that burning sensation away from between my shoulder blades.i get the feeling these will work less,though,as patch has lost approx. 40% effectiveness over last week,so we added 5 mcg more,lol.those injections don't help every1,as i'm sure u were told be4 hand.good luck 2 u in your search 4 relief,the pool is instant relief,direct heat soothes the beast,2!i'll pray 4 your symptoms 2 alleviate,& He's watching over u 2,so u are well protected.God Bless,Lanisha.spinelessinalberta :)

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Hi, ive got Kyphosis. I had an operation when i was 14years just been told 3years ago that the op that i had is no longer supporting my spine so im getting worse again, but kepping postive this time as im 25years married, looking at getting a bigger house to cope. Throwing myself into research. Im doing a sponsored skydive to raise money for Scoliosis Assocation UK, just go on to justgiving.com/samantha-storer. Thanks all the awareness helps other people that need help.

Hope 2 speak 2 u soon. Hope u feel better soon

Sam

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no,samantha,i will never get better again.that is 1 of the hardest 2 believe & the hardest 2 swallow about this whole thing that i suffer from as i am completely unique in the medical community.5 docs have so far turned up 0 data on a case like mine with the level of severity & amount of spinal involvement.i really admire u & the things u are accomplishing,& i am envious 2,cause i've so far been unable 2 secure any income whatsoever up 2 the point of this writing.i had a job interview 2 day but had 2 cancel as i had no $ 4 fuel 4 the volunteer driver.i have so many things on the go,but i have so far been unable 2 bring anything 2 fruition as my lack of $ is the largest hurdle i have faced yet.i don't even have a permanent residence yet,but i hope 2 move down with my son & daughter 3 hours south of where i am now.if u can obtain ANY pertinent data 2 my case,PLEASE 4 ward 2 me ASAP.paul.pedersen0@gmail.com or paul7ped@yahoo.ca spinelessinalberta u are right!keep ur chin up,it could be a whole lot worse. :)

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Hi Paul,

Your right it is hard 2 swallow about getting worse, i'm getting worse as the months pass on, so i will be in a wheelchair sooner than 1st thought which is hard sometimes. The main thing for me is losing my inderpence, as i do alot for myself, as im quite stubborn lol.

Good luck on finding any info about your case, & move.
Samantha

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Well,here I am again,last post being the end of April.Lots has transpired since then,getting 2 the point of almost total immobility now,under 20% functional capacity.Pain at new levels again,medication does nothing,now,total waste of time.Have been homeless last 8 weeks,son I was 2 stay with was drinking more than my wife.Could not in good conscience watch him make the same mistakes I made all over again.I really thought he had learned from my example.Had 2 protect the grandkids above all else,could not get any help down there,so a doctor in High River Hospital sent me 2 Calgary 4 more resources.It has been a big help in the homeless shelter,but the overall mood is so negative that it drains me mentally & physically.I vowed 2 God & myself when I entered the shelter that all I want 2 do from now on is give.I am a walking miracle,docs just keep shaking their heads in disbelief that I am still ambulatory.Latest set of x-rays(7/15/12)shows massive destruction & continued degeneration on all levels of the spinal column.My big toe joints are now getting in on the act,2,swelling up & wreaking all sorts of havoc.Arterial fibrilation & bradychardia are part of the picture 2,now,so more complications 2 add on 2 the plethora I have now.Spiritually I continue 2 grow daily,I'm not shrinking,I am getting taller every day!spinelessinalbertaJustKeepSmilin':)JesusSaves!P2

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Hi Paul. i can't believe all you're going through being homeless. I do hope you can get into some kind of housing soon. I wonder is surgery an option for you some day?

I have started Fentanyl patch and it's helping my pain a lot although my mobility is minimal to in the house. I pray your wife and son will stop their drinking and pray for their salvation. My husband is very emotionally abusive to me and feel I'm stuck right now as I can't do much for myself and can't even get myself to leave right now as he does everything for me so I just avoid him. I hope he will be saved one day. He almost got totaled by a flatbed truck and my first thought was well why didn't he? Very sad not having a supportive spouse. Why do you have to leave your own apt./house? My husband refuses to leave so we just live separate lives. You're without a bed in your own home. Sorry to hear.

I do hope you will get some more pain relief and glad you're keeping on in the faith. Gentle hugs in the Lord. Cheryl

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No more gentle hugs!I want a great big bear hug!People in this shelter are so mad all the time,I'm afraid 2 get bit half the time,especially in the AM!Good 2 hear your meds came thru!I Still have an ace up my sleeve in the form of the Buprenorphine patch,20 MCG.I have not used 1 since mid April so they should be effective in the long run.The meds I take now are the Cesamet(naboline)& the codeine 30's help a bit during the day,but not that blanket I get from the patch.Zoplicone helps me 2 nod off 4 a good sleep most nights.Pain levels have increased over yesterday,even,but I know Jesus has his hand on my back!He will heal me,just like Job,Paul & Isaiah.He bore our sins in His body on the cross so we could enjoy what we have 2day.All I want 2 do is repay,Lord.All I want is 2 repay.Gonna wait on the patch as long as humanly possible,after I move,maybe?I have found a place 2 go,a room in a gentleman's house not far from my oldest daughter!Are you in the US?I'm here in Calgary,AB.I am devastated 2 hear about your domestic situation,I have the feeling he is envious of your strength in the face of adversity.Unknown as that is 2 him,he is afraid of it as he does not understand it.Girls in the shelter & downtown,2,want me all the time,but this is HARDLY the time or place 2 start a relationship!I pray 4 you every night that he will not hurt you,some get angry 2 the point of violence,God will protect you,but things happen all the time.You know there is a place waiting where He will take care of both of us forever!I continue 2 grow spiritually despite the new challenges,& I still feel like I'm gettin' taller!spinelessinalbertaJustKeepSmilin':)JesusSaves!P2

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If you are reading this Lenisha,injections are no longer on my relief list,the last round lasting a whopping 5 days!They worked 1/3 as long as the 1st set did in October last year.It appears my case/disease has outgrown them.It has an appetite all it's own.With the dietary changes I have made & getting regular exercise,I have been doing surprisingly well,family doc last week,physiatrist the week be4 that both said,"Whatever you're doing,KEEP doing it!"So,I guess I'm "progressing" nicely,so 2 speak.Pain doc said can't do anymore 4 you,good luck.That's ok,God is in my corner,man!I cannot lose with Him & His hand on my back all of the time!The devil is 4 laps behind & I'm workin' on #5!MoreL8RspinelessinalbertaJustKeepSmilin':)JesusSaves!P2

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Hi Paul, I live in Toronto not in the States. Great to hear you've got a place to go to. Does the YMCA have housing also? Either way glad you're getting out of the shelter soon. Thank you for your prayers for protection and I pray big Angels will watch over you also. I pray you will prosper and find a good place to live. Great to hear the pain meds are helping and Nabulone also. I wonder how that would work for me? I think it would just give me the munchies or something LOL.

I hope to get a nerve burn if the diagnostic facet joint injections help. I know the waiting time is awful here though as I have waited so long to get these injections and nerve burn for my lower back to numb the pain hopefully. I'm done with all epidural steroid injections and other injections done blindly without an x-ray machine to check placement of the needle and I will be getting Twilight sedation during the needles also which will be a first. I think it's disgusting that pain clinics can give injections without sedation or with x-ray checking for placement of the needle. I found a good pain Center downtown which does all these but the wait time is terrible as well as the government cuts to chronic pain patients. Here's to a new day and a promise we can believe.

For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.. (Jeremiah 29.11) We can trust to his word as He will do it. Faithful is he that calleth you, who also will do it” (1 Thessalonians 5:24) Matthew 18:19 Again I say unto you, That if two of you shall agree on earth concerning anything that they shall ask, it shall be done for them of my Father who is in heaven. Let's pray that we will both be healed and agree together.

One day at a time is one of my favorite songs and it's on Youtube if you want to listen to it.

Take care. Cheryl

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It's funny you quote THAT scripture,"He has a plan,"cause it's on the face of a journal some 1 back in Linden gave 2 me!We were meant 2 have this interaction,also.Everything happens 4 a reason!I know there are better things in my future,I have 2 endure & persevere,watch & listen & be willing 2 do His work @ every opportunity!spinelessinalbertaJust Keep Smilin' :) JesusSaves! P2

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All right,now I know I am on my own in this search 4 employment,if I want 2 work,that is.That is not the inherent problem here,unfortunately,it is the public at large that I have 2 convince of my capabilities.Now that I have no help as far as advocacy,counselling,whatever it is goes in2 place when some 1 is declared disabled.Better get my ass in gear if I am 2 accomplish anything of a productive nature.spinelessinalbertaJustKeepSmilin' :) JesusSaves! P2

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Hi paul,
Sorry to hear of your health issues. I too have severe pain and it took me 5 yrs to get a diagnosis of DDD. I am in and out of a wheelchair. Somedays I can't move at all. I have tons of symtpoms that are similiar to ms. I have a herniated disc in my neck with narrowing of the canal, I have bone spurs, 3 bulging discs from c3 to c6, severe arthritis and pinced nerves and alot more. I also have lesions 2 on my brain and 1 on my neck. the laser spine institute said i was a candidate for their surgery. But I need to know if this will help me walk again. Did you ever look into the laser spine institute?? they do a free evaluation of your mri. I know all too well about the pain. I am in constant pain daily. No matter what I do I get no relief.
I wish you well
God Bless
Caren

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Caren, I would get a second opinion before any surgery. They told me they would do a free evaluation on my MRI report also, well the secretary told me that when they got back to me but do to costs and being out of the States it's too costly for me to get this done. I hope you get some relief someday/

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Hi Cheryl,
Thanks a bunch! Yes I am going to a spine institute the end of this month to see what they say. This is getting unbearable. Do you know of anyone who had the laser surgery done? I went to them because I couldn't get any answers anywhere. And they did the free evaluation. I have been dealing with serious problems for about 6 yrs and have seen many drs and 7 neuros and nobody ever mentioned DDD. Why do you think that is? How come none of these other drs saw DDD??? I just don't get it. Thanks again and I hope your doing well.

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I don't know why but the same with my MRI, The first few weeks after my back was hurt and I had sciatica, numbness tingling down my leg I was found to have a herniated disc at L5-S1 and an annular tear and nerve impinging and still no Dr. would do surgery. Just as well it healed on it's own but now I have a osteo bar or bone spur there now but my second MRI showed DDD throughout my lumbar spine and now my third MRI and 3 years later no mention of DDD just mild narrowing and bulging disc at L4. I'm totally disabled with back pain but the sciatica isn't as bad. It's crazy how one Radiologist says DDD and another no mention of it. Usually DDD is caused by an injury or wear and tear as opposed to being age related. Anyways I hang out at chronicpain site.com if you want to stop by and say hi there. Do you have numbness or tingling down your leg?
I'm going for a diagnostic facet joint injection since the MRI says prominent facets and see if I qualify for RFA radio frequency ablation next Friday and hope that's the cause of my pain and the nerve burn will help. Mainly the edges of the discs can cause "discogenic pain" I'm not sure what kind of surgery they can do to help but hope you can find relief.

Take care.

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Hi Cheryl,
Yes I have numbness. I go completely numb from the waist down. I can't walk for crap. I have bad muscle spasms and seizure like episodes. I too have many bone spurs forming and the annular tear, bulging discs and herniated discs and stenosis This and narrowing. I did have a horse back riding accident when i was 17 that wass 33 yrs ago. It takes that long to show up?? I used to be very active, swimming, biking, skating. Now i can't walk, swim or anything of much. I got myself an excercise bike hoping this will slow this disease down. I went from the cane to the wheelchair in less than a yr. this sucks!! Thanks again i will meet you in the pain room. LOL

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Yeah,guys,what is the story on those spasms.I did not suffer with them 4 the longest time,not since mid-April of this year,now they are starting up again.Only at night do they torture me so,coming out of nowhere & sending pain and tremors in2 my limbs.No control of these spasms is what scares me the most,what if I get 1 when I'm going down the stairs?The 1's I had back in April seemed alot more violent,but these are longer lasting & painful at the same time.Any ideas as 2 why they would suddenly flare up like this again?I see the doc this week,so,hopefully he can shed some light on it.I feel so sorry 4 the guy,2 have such a case thrown in2 his lap,well,he said he was willing 2 take new patients!My heart continues 2 give us trouble,now the irregularity is the order of the day,or the week,I should say!spinelessinalbertaJustKeepSmilin' :) JesusSaves! P2

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