35 replies to this topic

[stenosisDwarf]

Hi Guys,

I have been lurking due to my blackberry being very difficult to post and view. I have been using my blackberry as I have been flat on my back for the last 6 weeks.
I am a Dwarf. The classic kind - Achondroplasia - Big head and small arms and legs.
At age thirty I started getting spinal problems - mainly due to bumps that I shouldn’t have bumped .
My first injury was when I was wrestling with my Niece and Nephews over a period of 2 days. I was really ruff with them.
What I didnt realize is that I bruised C1,C2, C6,C7,C8. I started getting all manner of neuropathy from electric burning to partial paralysis.
I eventually went to a Neuro who said I had chairi malformation (incorrect diagnosis).

I had an op in March 2009 for a C1, C2 Laminectomy and broaden my foramen magnum (hole in skull where spinal cord enters)
Surgery went alright but I got hydrocephalus and the Neuro didn’t believe me and placed me in a psych ward. It got so bad that CSF fluid was gushing out the wound.

My parents eventually took me to another Neuro who advised i needed an emergency VP shunt.
I had the shunt put in and it didn’t work. I had a revision and that didn’t work either. After the first revision I had a pulmonary embolism and 4 heart attacks.
The doctors put me on a ventilator and advised my parents that I would not make it to the next day.

I managed to survive and spent 60 days in ICU. I lost 30% of my body weight.
It took me 2 years to properly heal from that surgery and I made a full recovery.
I am still waiting for my case with the health council to see if they will fine/strike off the first neuro for incorrect diagnosis.

The above was nothing compared to what I recently endured.

After 2 years from the first surgery I started getting lumbar pains. First faint and then after lifting a heavy packet of sand, very bad.
On the night of my operation the pain replaced itself with paralysis on my right leg. I went to sleep after icing and woke up 100% paralyzed from the waist down. legs, bowel, bladder - Asia A.

I phoned my Neuro and got an ambulance ride to the hospital. 4 hours later, after an mri and xrays I was operated on and had a 6 level lumbar laminectomy. L1,L2,L3,L4,L5,S1.
The doctor said that it was so bad, bone was floating around my cavities.

I spent 1 week in ICU, 1 week in general ward and 2 weeks in rehab.

I am currently at home resting and have the following symptoms: Right leg is numb and week - have to walk with stick. Bladder is Neurogenic and I am self catherizing every 3 hours. Prostate is inflamed.
I am going back to work in 1 week.

I still have stenosis in lumbar and C6,C7,C8 and Bulging disks on multiple levels.

So to sum it up - 7 ops,9 levels decompressed,4 heart attacks,1 coma, temporary paraplegia, and I haven’t even begun to son the T and C levels.

I would really like to chat to other dwarfs but alas we are few and far between.

Edited by stenosisDwarf, 26 October 2011 - 02:45 PM.

[biggdoggpa]

wow dog thats a lot to go through!! welcome to the forum hope things work out for you!!! maybe you should reconsider going back to work might not be a good idea you should really look out for your back

[stenosisDwarf]

biggdoggpa, on 26 October 2011 - 03:11 PM, said:

wow dog thats a lot to go through!! welcome to the forum hope things work out for you!!! maybe you should reconsider going back to work might not be a good idea you should really look out for your back

Hi,

I wish I could but this is a new job. I had my operation as an emergency 5 days before I was supposed to start. I have told them I will try and if I don't feel well, I will leave early. The salary is astronomical - CEO level and I don't want to loose this job .

[greybeard]

Hiya SD.

A big welcome to the forum. You certainly have had your share of problems. I hope things will start to look up for you soon.

I'm not sure if there are any other dwarf members, but one thing we all have in common is that we either have, or are caring for someone with, a spinal problem. I don't think size is too much of a factor.

I too have multilevel lumbar obstructions and am currently waiting to see a spinal surgeon. For some unaccountable reason, I'm told, a GP can't refer you directly. You have to be seen by a rheumatologist first, which is where I've been this morning. Unlike you, I shall probably be told I have to lose 30% of my body weight before they'll take a knife and fork to my spine! Incidentally, Amitriptyline is good for the burning pain.

Looking on the bright side, you can still walk - which is a bit miraculous considering your history. I've read several times here that people who have had laminectomies have been worse off after the surgery than they were before.

It's great to hear that you are so positive about returning to work. It sounds a brilliant opportunity. Good luck with it, but do take it easy until you've had a chance to recover fully.

Let us know how you get on.

[qbounce]

Welcome to the site SD, and thanks for sharing your story.

I hope your final surgery has helped improve your situation.

Keep up with the walking, and stay away from sand bags!

[Tetracyclone]

Not to minimize your dwarf difference, but we are all a lot shorter in our chairs than we once were. maybe eye-leel with you?

Great going surviving all that, and I shall hope for the best of luck for you re the new job.

[wheeliebear75]

Well to have survived so many consecutive heartaches alone shows you're one tough cookie. But I do think it'd be a good idea to EASE back into things so as not to undo what benefits the surgery did for you. And dwarf or not I'm sure that just about anyone would be taking at least few weeks to recoup after not just having back surgery but heart trouble as well. Welcome to the Forums SDwarf.

Edited by wheeliebear75, 27 October 2011 - 01:26 AM.

[ClaraTaylor]

Welcome to the forum! Nothing intellectual to say (it's too early in the morning) but just wanted to wish you all the best, especially when you start your new job!

[megatrig]

wow! Welcome. Quite an introduction!! Not sure what else to say there!!!!

[goose]

Welcome aboard! You've experienced more than your share of heartache. Sometimes life can be cruel but it normally makes us stronger so we can tackle the next big hurdle.

Sounds like a great job just don't put money ahead of your health it may not be worth it. Only you know your body and its limitations. Think with your head and not your wallet. Money can be tempting but you only get 1 body so I hope you make the best decision for you.

I hope the best for you physically. Sounds like you're a fighter!!!

[stenosisDwarf]

Hi,

A little update:
Got my custom molded chair to help my back yesterday. It's comprised of 3 main components:
1)"The Matrix" modular building blocks for my thorax - Molded to my back but fully adjustable
2) Custom bum mold for seating
3) Adjustable frame - height adjustable with foot rest

Cost +- $1000 (insurance is paying hopefully)

I have never felt such comfort. All my life my weird proportions have forced me to slump on chairs and this has led me to spinal damage.
I can sit in it for hours and feel refreshed and comfortable when I come off it.

I will be ordering one for work and this will hopefully allow me to avoid more surgery (C6/C7) - my only regret is that I did not have this chair 2 months ago before my 6 level Laminectomy

Rory

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[mcferguson]

Welcome aboard! It's great that you found that chair and it works so well for you. Hopefully, like you said, no more surgeries. You've had enough of those for several lifetimes.

[stenosisDwarf]

Hi guys. Just wanted to say that i am making a quick recovery. My bladder and leg came right. I am going to pt to strenghten my glutes as they are very weak. I feel very lucky and my NS cant believe i was para for a day! The post traumatic stress still haunts me and i find i have become obsessed with paraplegia and how people become injured. Any thoughs on why i am obsessed?

btw... The chair didnt work :-(

[Tetracyclone]

Thanks for good news. RE the obssesion: maybe you have a future as a para pretender!

[stenosisDwarf]

Hi,

Nothing new to report except some hectic depression.
I have hardly gained any strengh over the last week and am starting to loose feeling in my saddle again.
I understand that i am lucky to have my legs but i didnt expect my recovery to plateau so soon.

Has anyone else had one weak semi paralyzed leg and if so what did they experiance?

Thanks guys

[stenosisDwarf]

Hi,

I am having a really tough time - getting saddle anesthesia again and urine retention. I think the original operation is starting to possible scar over as it does seem inflamed any more.
This is a terrible time for me as basically i feel i am waiting to become paraplegic. Doctors tell me i have nothing to worry about but my symptoms are becoming worse by the day.
1)weakness and numbness on right leg.
2)numbness on saddle
3)urine retention
4)Burning on both legs
5)C6/C7 stenosis with burning hands

My NS said I should go for a mylegram early next year to see whats going on. I have a sinking feeling i might have slight CES.

[Tetracyclone]

Stenosis guy,

I am sorry you are having a rough time. You are also in the shock and horror phase of this new development. It will wear off and you will accommodate a new normal, in time.

Spirit gave me a mantra for SCI:

"The situation is grim, but the heart is good."
Heart energy will always calm and lighten the day. Reach out to someone else.

Edited by Tetracyclone, 25 November 2011 - 03:31 AM.

[stenosisDwarf]

going to take lyreca - ibuprofen isnt touching sides and legs and hands are burning
Anyone had experiance with lyreca?

[ClaraTaylor]

stenosisDwarf, on 25 November 2011 - 12:13 PM, said:

going to take lyreca - ibuprofen isnt touching sides and legs and hands are burning
Anyone had experiance with lyreca?

It has helped me ENORMOUSLY.
Not everyone gets on with it unfortunately but for nerve pain I have gone from being unable to do the simplest of household tasks like making a cup of tea because of the pain to... well I've restoring classic vehicles again!

Do be careful with it, and don't drive til you work out if it affects you (some people report getting sleepy). And hit the search button (top right of your browser) to find the many many threads about this drug.

[greybeard]

Tetracyclone, on 25 November 2011 - 01:10 AM, said:

Spirit gave me a mantra for SCI:

Just curious, but which spirit helped so much?

I've tried most of them, but they nearly all just make me sleepy or I bump into things and start waving my arms about while singing very loudly. Except for Scotch, which brings out my latent aggression.

[Edinburgh Colin]

greybeard, on 25 November 2011 - 03:03 PM, said:

Tetracyclone, on 25 November 2011 - 01:10 AM, said:

Spirit gave me a mantra for SCI:

Just curious, but which spirit helped so much?

I've tried most of them, but they nearly all just make me sleepy or I bump into things and start waving my arms about while singing very loudly. Except for Scotch, which brings out my latent aggression.

Funny that GB and those of us from North of the border are known for our gentle and placid demeanour, especially those from about 40 miles West of me!!!
EC (East Coast)

[greybeard]

Edinburgh Colin, on 25 November 2011 - 06:31 PM, said:

Funny that GB and those of us from North of the border are known for our gentle and placid demeanour, especially those from about 40 miles West of me!!!
EC (East Coast)

[stenosisDwarf]

Made full recovery. Everyone says its a miracle. Took 7 months of intensive therapy but i can walk and even run a little. Owe it to luck and a dramatic change in lifestyle. Still hsve some residual pain in wound. Therapy is 45 min biokinetic sessions 3 times a week religiously.

[ClaraTaylor]

stenosisDwarf, on 15 April 2012 - 05:49 PM, said:

Made full recovery. Everyone says its a miracle. Took 7 months of intensive therapy but i can walk and even run a little. Owe it to luck and a dramatic change in lifestyle. Still hsve some residual pain in wound. Therapy is 45 min biokinetic sessions 3 times a week religiously.

Congratulations! I am glad that you made such a fantastic recovery.

[greybeard]

Glad for you SD.

[Aparr]

Wonderful news SD, congratulations!!

Edited by Aparr, 16 April 2012 - 01:16 AM.

[Ratticis]

Good to hear. Hope it keeps up

[The Black Sheep]

Holy cow I can't beliefe I missed this post for so long! A very belated welcome and I'm thrilled to see your update that you're doing well! Doesn't come that often we hear about the good outcomes. Hope the progress continues and the pain subsides more.

[stenosisDwarf]

The Black Sheep, on 16 April 2012 - 02:05 AM, said:

Holy cow I can't beliefe I missed this post for so long! A very belated welcome and I'm thrilled to see your update that you're doing well! Doesn't come that often we hear about the good outcomes. Hope the progress continues and the pain subsides more.

Thanks. Very hopeful. Think the chain of events that brought me here and my success was reliant on one key factor - my dad is a doctor and i know my NS personally. That coupled with $1000 a month private health care scheme i am on meant i had been operated on in under 4 hours when i found out i was para.

greybeard, on 16 April 2012 - 12:08 AM, said:

Glad for you SD.

thanks. Hope this gives you confidence to go for an op now

Edited by stenosisDwarf, 17 April 2012 - 04:55 AM.

[stenosisDwarf]

In a really bad way suddenly. Sat weird after a bath and think my disk slipped 4 days ago. Cant walk and large parts of my leg are numb. Back muscles are burning. Insurance won't pay for another scan unless I check myself into hospital. Think I have really messed up now. Scared as hell