17 replies to this topic

[scatty14]

Hi all,

I dont know if this is the site for me or not, do I classify as a spinal injury or a spinal disorder ??

I am 46 had a multiple c5-c7 laminectomy in 2007 due to cord compression etc. Then in September 2008 I had c5 to c7 ACDF with hardware.

To cut a very long story short I was originally diagnosed wrongly with MS and my cervical problems though highlighted by MRI WERE left and I was told it was insignificant etc how wrong that was ...about 2 - 3 years of progression and my worsening I ended up in hospital where the neck issues were picked up and I had to have emergency laminectomy thank goodness otherwise I would be totally paralized now.

Anyway the laminectomy was to halt progression as I had the deteroration too long to expect any reversal of my problems that being mobility, leg and arm weakness, Numbness, balance issues, pins and needles, electric shock type pains, burning, loss of manual dexerity, bladder issues etc etc. I was told I had permanent damage cervical myelomalacia /cervical myelopathy. The laminectomy helped only minimally and straight after surgery my right arm was in excruiating pain. I DID NOT HAVE THIS PRIOR.

last year due to an increase in my right arm pain due to radicuopathy nerve pressure I had the ACDF C5-C7 with hardware. Immediately post surgery I had new type pains in my upper left arm which were not present prior to surgery, well its a few months later I still have the upper arm pains which are affected by position and or head turning/tilting but was happy that the right arm pains into my hand had subsided.

However my main concern now is the subtle return of my right arm pain which goes into my hand the same pattern prior to surgery?????? anyone else have this and have any input for me........please!

yea I also hate not being able to do things like I use to do... its so frustrating. even this typing is really hard work. I find it very hard to get around my mobility is not good and at the moment I limit myself as I cant walk far. I cant do normal shopping and can only manage a small supermarket, well just a couple of short aisles with the help of a trolley to help me walk. I cant carry anything of weight without my legs and arms etc getting worse. I have issues around the home as have weak arms and hands but I can get about my home mobility wise but any distance more than this is very hard. The pain kicks in and my legs and arm then neck etc all get worse. Iam still trying to come to terms with being disabled guess I was a vain female and have only just got use to having to use a walking stick well i still hate it. Some people say i should get one of those scooter things or a wheelchair as I limit myself so much and can then do more but I just cant do it psychologically
Seeing one consultant state I was tetraparesis really mad me sad even though I know its true etc . I am now divorced as my then hubby of 20 plus years left me shortly after being diagnosed with MS and I feel that I will now be left on my own etc.
thank you for reading this and any replies will be greatly appreciated.

[greybeard]

Hello scatty14,

Well the folks here gave me a warm welcome although, like you, I had not suffered a traumatic injury. I have lumber spinal stenosis, probably caused by age-related arthritic deterioration and spurs.

Also like you I have recently wrestled with the decision of whether to finally admit I was crippled and really needed a wheel chair. It is not an easy decision for those of us with insidious slowly progressing weaknesses.

All I would say is that once I had faced the fact that I really was disabled and needed a wheelchair, it felt as though a weight had been lifted. Soon after acquiring a wheelchair I also bought a scooter and have to say the difference in my quality of life is enormous. I am no longer the self-imposed recluse that I had gradually become over the past 4 or 5 years.

Look at it this way. By refusing to get some sort of mobility aid you are unnecessarily limiting your options. If you get a chair or scooter and don't find yourself needing it very often, perhaps you can achieve more than you think. You can always get a reasonable return on the item(s) if you later decide to sell them on eBay.

Go for it. I bet you won't regret it.

Good luck.

[scatty14]

greybeard, on Jan 30 2009, 12:53 PM, said:

Hello scatty14,

Well the folks here gave me a warm welcome although, like you, I had not suffered a traumatic injury. I have lumber spinal stenosis, probably caused by age-related arthritic deterioration and spurs.

Also like you I have recently wrestled with the decision of whether to finally admit I was crippled and really needed a wheel chair. It is not an easy decision for those of us with insidious slowly progressing weaknesses.

All I would say is that once I had faced the fact that I really was disabled and needed a wheelchair, it felt as though a weight had been lifted. Soon after acquiring a wheelchair I also bought a scooter and have to say the difference in my quality of life is enormous. I am no longer the self-imposed recluse that I had gradually become over the past 4 or 5 years.

Look at it this way. By refusing to get some sort of mobility aid you are unnecessarily limiting your options. If you get a chair or scooter and don't find yourself needing it very often, perhaps you can achieve more than you think. You can always get a reasonable return on the item(s) if you later decide to sell them on eBay.

Go for it. I bet you won't regret it.

Good luck.

Thanks for your reply. yes like you I am a self imposed recluse . Just out of curiosity how do you manage a wheelchair and scooter I have weak arms and legs and not sure if I could even manage such things ??

[greybeard]

scatty14, on Jan 30 2009, 01:36 PM, said:

Thanks for your reply. yes like you I am a self imposed recluse . Just out of curiosity how do you manage a wheelchair and scooter I have weak arms and legs and not sure if I could even manage such things ??

I'm "lucky". Only my standing/walking ability is affected and I have reasonable upper body strength. You would probably benefit from an electric powered chair that is controlled by a joystick.

Have you asked your GP to refer you to your local wheelchair service? Another option is to ask for an Occupation Therapy assessment. Either will assess your capabilities and you may find you'll be offered a chair suitable for your needs for free or at a reduced cost

I had a manual chair supplied by the wheelchair service, but handed it back because it was less comfortable and weighed more than an £80 chair from eBay that I had borrowed and subsequently purchased. It's a bit of a clumker and not too easy to push because of the weight, but it suits me for the moment. I doubt it would suit your condition, but don't give up without researching all the options.

You should find a mobility scooter easy to manage. It takes almost no muscular effort to use for local trips. Getting it in and out of a car requires a bit more work, but the light-weight ones suitable for in-shop use are much easier to handle. Mine has to be hefty as I weigh 20+stones.

I did manage to buy an almost-new small scooter from eBay for my wife for less than £70 (retail price nearly £600) but you have to be prepared to look every day and be very lucky. A company in Leicester called Pro Rider seem to be one of the cheapest retailers and their Road King model is ideal for me. Do a google search for the options.

[cate]

Hi Scatty,you are in the right place, my daughter is very similar to you, but hers was a car accident, and the injury went undetected for many years, when she kept falling down and dragging a foot, they also thought she had MS, which I was worried about as my mother in law had it. However after scans, c5 c6 was discovered and the spinal; cord was flatten with no chance of regenration as it had been to long. she also bas Browns Sequard Sydrome, and L:ympodema to contend with, . she drives an automatic, and works part time, and studies, sometimes, she seems to drag herself about. she lives on her own and manages well.,
Ssurpriisng she is a hairdresser, which she can do by balancingon tilted stool. she is a technician so is complicated work, but she is good at it, but it is very tiring. she did teach hairdressing, but it was driving around the country going to different colleges that she had her accident, they said the same once she had the scan she was in hospital within 4 days, otherwise she would have been in a wheelchair, no guarantees, but that op was about 8 years ago. because of the BSS right hand side of the body works slower, but she adjusts to this.
So I wish you all the best. Keep going.
Cate

[wheeliebear75]

Although the majority of us are here from a traumatic injury not everyone is. The folks around here are pretty open. I have seen some scooters that are very light wieght to fold into car trunks......perhaps you could look into something like that?

[scatty14]

cate, on Jan 31 2009, 02:51 PM, said:

Hi Scatty,you are in the right place, my daughter is very similar to you, but hers was a car accident, and the injury went undetected for many years, when she kept falling down and dragging a foot, they also thought she had MS, which I was worried about as my mother in law had it. However after scans, c5 c6 was discovered and the spinal; cord was flatten with no chance of regenration as it had been to long. she also bas Browns Sequard Sydrome, and L:ympodema to contend with, . she drives an automatic, and works part time, and studies, sometimes, she seems to drag herself about. she lives on her own and manages well.,
Ssurpriisng she is a hairdresser, which she can do by balancingon tilted stool. she is a technician so is complicated work, but she is good at it, but it is very tiring. she did teach hairdressing, but it was driving around the country going to different colleges that she had her accident, they said the same once she had the scan she was in hospital within 4 days, otherwise she would have been in a wheelchair, no guarantees, but that op was about 8 years ago. because of the BSS right hand side of the body works slower, but she adjusts to this.
So I wish you all the best. Keep going.
Cate

Thank you for your reply. I am very surprised your daughter works and the type of work she does good for her! Does she not have problems with her hands ..numbness weakness etc and her arms? I certainly couldnt manage her work. My left side is weaker than my right and I have partial numbness , temp/pain recognising problems on my right side. My balance isnt great either. As soon as I DONE TOO much with either my arms or legs everything gets worse even a simple task like using a dustpan and brush can be too much. Ireally appreciate your reply as it all helps.thanks again

[scatty14]

wheeliebear75, on Feb 2 2009, 08:39 AM, said:

Although the majority of us are here from a traumatic injury not everyone is. The folks around here are pretty open. I have seen some scooters that are very light wieght to fold into car trunks......perhaps you could look into something like that?

Thank you for your reply. I dont really want to use anything at the moment. I struggle with this pyscholgically. I know I MUST pass this as I am going out less and less. Idont know why but it seems like I am deteriorating again to the position I was in prior to the last surgery in September 2008. My arms are already aching from doing this. Its really getting me down at the moment. I thought things were a little better a month or so after the surgery but know things look otherwise. I dont think I coud even manage a light scooter as things are. Even bending over and using a dustpan and brush makes me worse etc. I am feeling it more around my home mobility and arm wise....this makes things harder as I SEEM TO BE using up my energy a lot quicker before things hit me which makes everything worse in terms of mobility and arm/hand weakness etc. It would definately have to be a very light scooter and/or wheelchair. I do drive but even the door seems too heavy as does the sterring at times. Guess I have to learn how to pace myself more but how does one do that when if like me I am exhausted before leaving home. My arms feel like I have lead weights on them then the legs etc etc,

[scatty14]

I DONT KNOW WHY my message re fatigue keeps getting moved YES I do know its in the spastcity area.
But I really want info on if anyone else gets the same problems

when doing the little tasks like using a dustpan and brush or changing duvet my legs and arms get heavier and weaker then its harder to do anything. does anyone else get this?
If I try to keep going then the pain kicks in and I come to a standstill .

when I need to p they also get worse, sometimes my limbs just get worse without any apparent reason. I find myself being able to do very little at times as my limbs just dont want to function.

ANYWAY ANY REPLIES WILL BE APPRECIATED I just wonder how much is fatigue and general weakness heaviness i have.

Edited by scatty14, 02 February 2009 - 06:55 PM.

[Trinity]

This may seem like a silly question but are you sleeping properly at night? Chronic pain can really disrupt your sleep, sometimes I wake up several times over night, I end up so tired that everything seems like a huge effort. Are you taking any meds for pain or spasticity? They can all cause drowsiness and lethargy.

As for managing a wheelchair, you'll find that many tetras on this site, especially from the uk, use manual chairs. I understand you're wish of avoiding a chair for as long as possible but you may find you're quality of life would actually improve with one.
Good luck

[Murray]

Hello Scatty -

Good to have you "onboard" - sorry to hear about your several difficulties. Wish you lived in the "colonies" ... California, that is. I run a little support group near Sacramento, and recently had a power chair given to us. I networked to find who needed one nearby. Price was right - 0! Try seeing if any similar groups are in your area. They may be able to help. (I know very little about medical insurance in the UK. I've heard that they do a great job - yes?)

Best wishes -

Lynn

[scatty14]

trinity, on Feb 2 2009, 07:08 PM, said:

This may seem like a silly question but are you sleeping properly at night? Chronic pain can really disrupt your sleep, sometimes I wake up several times over night, I end up so tired that everything seems like a huge effort. Are you taking any meds for pain or spasticity? They can all cause drowsiness and lethargy.

As for managing a wheelchair, you'll find that many tetras on this site, especially from the uk, use manual chairs. I understand you're wish of avoiding a chair for as long as possible but you may find you're quality of life would actually improve with one.
Good luck

Hi

Yes my sleep isnt too bad, some nights are bad but overall OK. I know what you mean by not sleeping properly though as if I had a bad night it affects my functioning totally during the day. When I am tired I generally feel a lot worse. Sorry you are having many sleep problems. I am on several drugs and for spasticity at night I take baclofen , I also take amyltrypteline and Lyrica before going to bed for the sensation problems. I think these drugs proberly help me sleep as well. I cant take baclofen during the day as it makes my weaker leg worse and my balance worse. Thanks for the advice re wheelchairs I wouldnt be able to manage a manual one with my arms and hand issues butI know you are probably right re quality of life . You should get some advice re sleeping as it affects your quality of life ! Thanks for your reply hope you get help re your sleep.

Murray, on Feb 2 2009, 08:17 PM, said:

Hello Scatty -

Good to have you "onboard" - sorry to hear about your several difficulties. Wish you lived in the "colonies" ... California, that is. I run a little support group near Sacramento, and recently had a power chair given to us. I networked to find who needed one nearby. Price was right - 0! Try seeing if any similar groups are in your area. They may be able to help. (I know very little about medical insurance in the UK. I've heard that they do a great job - yes?)

Best wishes -

Lynn

Hi Lynn


Many thanks re your reply. Gosh I wished I lived in California lol. Yes a power chair would proberly be best when I can go there...... Medical Insurance ?? We have the National Health Service NHS in the UK I dont have any private insurance. Yea The NHS is OK could be better though! Just look how they didnt pick up my cervical problems even though it was on the MRI .

[qbounce]

[/quote]
Many thanks re your reply. Gosh I wished I lived in California lol. Yes a power chair would proberly be best when I can go there...... Medical Insurance ?? We have the National Health Service NHS in the UK I dont have any private insurance. Yea The NHS is OK could be better though! Just look how they didnt pick up my cervical problems even though it was on the MRI .
[/quote]


Unfortunately, that happens all to often, no matter where you reside. I have a blood clot that went unnoticed in the CT Scan, AND an MRI by 2 doctors, until a 3rd noticed it. It happens, and that's why there are these things called "2nd opinions".

Good luck to you.

[wheeliebear75]

They do have these things you can put on the back of your car......kinda like a bike-rack but it is for scooters and/or electric wheelchairs and has platform with a ramp at one end.......all you would need to do then is stand next to the car and drive it up (NOT with you in the scooter). I agree (I forgot who said it.....brain injuries.....gotta love um) but yes there are many people who can walk some but who still use a wheelchair to go out & about as it gives them a better quality of life. People who can not see well use glasses, people who can not hear well use hearing aides; people who can not walk well can benefit just as much as the person who uses glasses to see where they're going or the person who uses the hearing aides to not miss out on conversations. Lots of people with difficulties walking can use a wheelchair so they do not miss out on life, just because it is too taxing to go out & do errands or meet with friends.

[scatty14]

wheeliebear75, on Feb 7 2009, 02:51 AM, said:

They do have these things you can put on the back of your car......kinda like a bike-rack but it is for scooters and/or electric wheelchairs and has platform with a ramp at one end.......all you would need to do then is stand next to the car and drive it up (NOT with you in the scooter). I agree (I forgot who said it.....brain injuries.....gotta love um) but yes there are many people who can walk some but who still use a wheelchair to go out & about as it gives them a better quality of life. People who can not see well use glasses, people who can not hear well use hearing aides; people who can not walk well can benefit just as much as the person who uses glasses to see where they're going or the person who uses the hearing aides to not miss out on conversations. Lots of people with difficulties walking can use a wheelchair so they do not miss out on life, just because it is too taxing to go out & do errands or meet with friends.

Hi I like your analogies re reading and glasses etc I use glasses and dont think twice etc funny how life can be ah. You are of course right if I USED A WHEELCHAIR OR SCOOTER I could do so much more as I just go out for essentials and my walking is not comfortable but I see it as my only form of exercise etc. But the little walking I do outside of my home is never pleasureable just almost some sort of ojective / goal. Tha walk leaves me incapacitated to do anything else as the pain kicks in up my arms into my shoulders neck back of head , legs etc etc. Thank you for your advice I know I will have to go there sooner rather than later . But hey I also wear contact lens despite them being fiddly to avoid wearing glasses at times! I really appreciate your advice I am feeling a bit low at the moment as I seem to have deteriorated to pre ACDF status albeit the pain in my right arm is not as bad. For a shoert while I thought things were a little easier but now theyre not.

[scatty14]

Unfortunately, that happens all to often, no matter where you reside. I have a blood clot that went unnoticed in the CT Scan, AND an MRI by 2 doctors, until a 3rd noticed it. It happens, and that's why there are these things called "2nd opinions".

Good luck to you.
[/quote]



Hi Thanks for your reply, sorry the docs didnt pick it up initially. I too had several doctors before my cervical problems were picked up not even a second opinion noticed it took several docs and me to the point of not walking far etc etc. It really is so scary that mistakes can be made but thats life I guess. Thanks again.

[cate]

Hi Scatty. I have also replied on you other posting, but much the same as on here, . My daughter finds working very tiring etc, but is very strong minded. she works with a stool, that is tilted so she just rest on it, and uses a crutches in the Salon, this is fine for her. She also goes to the gym, at the moment not as often as she should, but she also had one knee rebuilt 3-4 times, re another accident, she is unable to do work outs as such, but with her physio help as to what she should be doing, and the gym people, they worked a programe out for her, which helps to keep her body moving. the best it can, that is the only exercise she can do.
The whole right side of body moves much slower than the other side, also her fingers curl very badly on one hand. but people do not seem to notice it, and she seems to be able to work round it.
She is aware that the length of time she will be able to continue in her work maybe limited, so she also is studying on open university type of course, started off at college one day and evening a week for the first two years, and the rest is done from home, with internet access. she has to take the exams, wheeever they are in the area, which normal takes a dayI think it could be very easy to n ot go out etc, and the longer things are left the harder it becomes. She can drive, and took a retest to confirm this at one of the sspecial centres that her neurologist advised her to, she drives an automatic, and this allows her freedom etc. she loves cinema and concerts and when she books she advises she must have an i8sle seat, that her right leg can stick out, as it will not bend properly usual this is fine. Last week we went to the Albert Hall to cirque de sol. as we love there shows.. We also went to Las Vegas a couple of years ago. journey was not comfortable for her, but Virgin Airline were as helpful and they could be.
To begin with was not keen on doing these things, but in time you manage to sort out what you can do even if it is a big effort, and maybe next day you suffer a bit more, but the pleasure of what you have done, makes it worthwhile
Anyway I hope you can sort things out so that you can enjoy life a bit more,
Cate

[scatty14]

[quote name='cate' date='Feb 7 2009, 04:06 PM' post='95393']
Hi Scatty. I have also replied on you other posting, but much the same as on here, . My daughter finds working very tiring etc, but is very strong minded. she works with a stool, that is tilted so she just rest on it, and uses a crutches in the Salon, this is fine for her. She also goes to the gym, at the moment not as often as she should, but she also had one knee rebuilt 3-4 times, re another accident, she is unable to do work outs as such, but with her physio help as to what she should be doing, and the gym people, they worked a programe out for her, which helps to keep her body moving. the best it can, that is the only exercise she can do.
The whole right side of body moves much slower than the other side, also her fingers curl very badly on one hand. but people do not seem to notice it, and she seems to be able to work round it.
She is aware that the length of time she will be able to continue in her work maybe limited, so she also is studying on open university type of course, started off at college one day and evening a week for the first two years, and the rest is done from home, with internet access. she has to take the exams, wheeever they are in the area, which normal takes a dayI think it could be very easy to n ot go out etc, and the longer things are left the harder it becomes. She can drive, and took a retest to confirm this at one of the sspecial centres that her neurologist advised her to, she drives an automatic, and this allows her freedom etc. she loves cinema and concerts and when she books she advises she must have an i8sle seat, that her right leg can stick out, as it will not bend properly usual this is fine. Last week we went to the Albert Hall to cirque de sol. as we love there shows.. We also went to Las Vegas a couple of years ago. journey was not comfortable for her, but Virgin Airline were as helpful and they could be.



Hi once again Cate

Yes I remember your posting above re your daughter being a hairdresser etc. I admire her for what she is doing. I drive an automatic car too yes it gives me independance but I still cant walk far etc so cant really go shopping like I USE to. I guess I just have to find a happy medium. some times even typing is hard word as my hands are stiff and numb etc. I went to my gym some months ago tor an assessment and there really wasnt much I COULD DO EXCEPT FIVE MINS very slowly ON A BIKE then my arm pain would kick in etc. You are right its easier not to go out and do things at times which is why i force myself to walk a little despite it being uncomfortable etc. I just need to adjust and find that happy medium. Does your daughter use a wheelchair and or scooter or rely on crutches alone when out and about? I get so frustrated at not being able to do things. I WOULD LOVE TO GO AWAY on a holiday but I know from past experience i really need a little help as i am so restricted on my own and everything becomes such hard work not that i mind that i mean the pain the exhaustion the not being able to do much the next day etc. I really appreciate your comments thank you so much . I too hope things get better to deal with as life is pretty miserable right now.