14 replies to this topic

[piggybaker]

I have just found out after eight years of being in a huge amout of pain that my back is broken at the L5 place at the botton and that i have no discs at all in this area due to the problem not being picked up for so long,

I have been refered to a neurosurgon who wants to operate, eerr he said he wants to put cages inbetween my er: vertibra (sorry these words are all so new to me bear with me please) then pin that to my hips due to that big bone in the middle of my back the big flat one at the base being broken almost into a V,

he said there is a 60/70% chance i will get better but due to being in pain for so long the brain may not reliset there no longer pain

he also said there is a risk that during the op there may be a problem and my cord could be damaged, putting me in a wheel chair.

I have 2 small children agaed 6 and 4 pregnancy was etremly hard work, the doctor was suprised i managed to have children,

so i guess what i am getting round to is , help i need some advice, you have all much more experience in this field,

By the way my name is Emma and i am a 31 year old female

Edited by piggybaker, 03 January 2008 - 09:05 PM.

[piggybaker]

I am telling the truth i am not fobbing anyone, i would just like some advice and may be friendship,as others don't understand when i am finding it uncomftable to walk, they think i am looking for sympathy, due to the problem not being visible they don't understand

[Brindabella]

Best of luck with your decision. Be glad that you already have children and that this operation in all possibilities will take away your pain and bring success.

[Dancingdolphin]

Hi...big decision...perhaps ask for a second opinion before you decide/

Good luck

Karen
xx

[Elzeen]

Agree you should get a second opinion - you may end up with some options to guide your decision. I have found that getting as much information as possible helps you find comfort in your decision - no matter the outcome. Good luck!

[Angela250153]

Hi Emma

yes a second opinion would be good. That said, I can appreciate the pain you are in as that is the area where the sciatic nerve originates and having had a herniated disc at L5/S1 I know how painful that is.

Just wondering why it has taken 8 years to find out that your back is broken. I think an Xray should have shown the fracture and if not a MRI scan certainly would have. I know these things take time to get on the NHS, but I would have thought that your GP should have arranged for these things.

As for a second opinion, see if you can get a referral to the Atkinson Morley Hospital in Tooting. They have some awesome neuro surgeons.

Hope you come to the right decision and that the op will go well for you.

[kewlcatkez]

Hi Piggybaker,

First of all I wanted to say that my story has some elements which are very similar to yours. Please see MY STORY its a link to the stories thread and my post here at Apparelyzed.

I also went through my last pregnancy at least, with paralysis issues which came to a point 2.5 years ago.

Secondly, I would echo what the others have said. Do get a second or even a third opinion. Ask about how many such procedures each has done. If possible go with the dr who has the most experience and best results. Do take into consideration the fact that some % will be lower for some drs as they may take on and operate on those who others would not, ie those with difficult cases. Also ask about the possibility of bone grafting, cadavar or harvesting from you. I believe that it is more of a hassle ( get good drugs!) for the patient at the time of the surgery, but afterwards the spine can be much stronger and have less issues with 'hardware'.

Also, please see: LIST NEUROSURG Its a list of the expert Neurosurgeons in the UK, as I notice you live here too.

Those different opinions are very important. I myself have had one surgeon who wanted to operate on all of my joints although the surgery would be unsuccessful due to the nature of my underlying connective tissue disorder ( I am blessed with paralysis and that). So do seek as many opinions as you can in order to make the best informed opinion.

With regards to another poster asking why it took so long to diagnose you, I can relate. in my case, as my story shows, they put a lot of my symptoms down to my Postnatal depression ( which I may not have had if I hadn't been in this situ), and although I had accident ( at low speed( which resulted in back pain +++ btwn my pregnancies, they were more concerned with my dislocated hip ( i dislocate easily which has increased). Basically the x/rays I did have were of hip, not spine and when I did eventually get the first MRI, my hip dislocated so much and caused so many spasms that the scan was barely readable.
So I just wanted to say that I also fell through the net. yes, the NHS diagnoses quickly ( mostly) in the most part, esp when someone is acutely unwell, but when the situation is a deterioration, even with the odd acute ( no sensation and movement for example!) point, they seem to look at other causes, as thats not how it normally happens.. My being a Nurse actually made things more difficult somehow, with the way I was treated..


Oh, I also have two young children ( 5 and under), chronic pain and drs have since been horrified and surprised that I had managed to carry babies at all.....so I have a few things in common.


I hope that this helps a little and that you find answers and more importantly that your surgery goes well,

Take care,

K


quick edit to say that the Neuro surgeon link above is to those used as Expert Witnesses in courts etc. It wasn't the one I wanted. I will have a look for that and post it when I find it. In the mean time, that link is still useful, as an Expert Witness Neuro Surgeon would be a good dr to bag. It however only has a fraction of those great N/surgeons on there...K

Edited by kewlcatkez, 04 January 2008 - 10:58 AM.

[cate]

Hi Emma
I also agree with all the other comments. I have a daughter who is c5/6 which was not discovered for a number of years, she also had knee problem, so everything was put down to that, until it got so bad, she was sent to the ROH at bolsover St, and Stanmore, where they thought maybe MS. so scanned her and then operated asap, xrays did not show up the spinal cord damage, They are telling you the worst scenario, which they must do. You must be very worried, please keep us informed, you will get plenty of advice and support from here, and look through the site, you will see many stories, that may help you
Cate

[kewlcatkez]

cate, on Jan 4 2008, 10:34 AM, said:

Hi Emma
I also agree with all the other comments. I have a daughter who is c5/6 which was not discovered for a number of years, she also had knee problem, so everything was put down to that, until it got so bad, she was sent to the ROH at bolsover St, and Stanmore, where they thought maybe MS. so scanned her and then operated asap, xrays did not show up the spinal cord damage, They are telling you the worst scenario, which they must do. You must be very worried, please keep us informed, you will get plenty of advice and support from here, and look through the site, you will see many stories, that may help you
Cate

Hi Cate,

excellent points. I have head of a few people with such experiences.


Piggybaker,

Hello again!, I just wanted to add that at one stage they thought that I also may have MS, mainly due to the fact that I had an episode of paralysis when I was a student I was about 20 ( a good few years b4). Again, the link tells the full version. Sometimes its good to see that similar things have happened to others. I know when this happened to me I felt that I was totally alone. The not knowing why I had such pain and loss of movement and sensation was very hard to deal with, especially when some drs and health care workers were unsympathetic.

Please feel free to contact me using the PM facility here, if you wish to chat further. My situation is different like I said in my lasy post, but we share some similarities.

Take care,

K

[kewlcatkez]

Brindabella, on Jan 3 2008, 09:20 PM, said:

Best of luck with your decision. Be glad that you already have children and that this operation in all possibilities will take away your pain and bring success.

Hi Brindabella,

The thing about the surgery which the original Poster is going to encounter, is that it is no guarantee that her pain and any other symptoms, will be eradicated post operatively. Indeed, she may have paralysis and other symptoms which she doesn't have now, postop. Also, I may be being a little over sensitive, bear with me if I am, but when folks say to me that I should "be glad that I have kids already", it tend to make me feel anything but the way in which the person saying it probably intended. My pregnancies, and by all accounts, those of the poster were anything but smooth. Yes, I am very, very grateful I do have children. However, many women with injuries, once stabilized, can and do go on to have families, paralysis or not.

I am sure that you are well aware of all of this, and more, and that your comments were meant to be supportive and positive. However, I just wanted to mention it as I felt that that didn't come across in the post.

I trust that you will see this perspective, and do not mean to be negative or conflicting. I just feel that awareness is everything, and although you may know this, another reading may not.

Take care,

K

Edited by kewlcatkez, 04 January 2008 - 11:32 AM.

[Lucky]

My mother had 2 major back operations where 2 surgeons, 1 from the US and 1 from N Korea came to watch and learn from Dr Webb (who did prince Charles operation when he fell playing polo).

The cartlidge between 2 of her discs had not slipped but totally crumbled and was no good.

Anyway my point is that there are a lot of clever Dr's, Consultants and Surgeons etc out there that know what they're doing.

How-ever, my mother refused to rest and carried on with house work etc and the operation could have had better results if she'd have listened.

So, I personally would go for it, but rest and do things right.

[piggybaker]

Thank you so much Kewlcatkez for your kind words they mean alot to me
and you are right other than the dislocation problem our problems run almost parallel

I too have had water works problems on really bad days, and it is so embarrassing, I am not on pain killers as the ones strong enough to take the pain away made me very sleepy,and my daughter bless her i have to stay one step ahead of her mentaly all the time



they have offered me an epidual as sometimes i have to use crutches to help support me when i walk, as i feel like my legs can't support me, but going down this road is just another path an avoiding the main destination.


can i ask, are you in a chair

[kewlcatkez]

piggybaker, on Jan 5 2008, 06:08 PM, said:

Thank you so much Kewlcatkez for your kind words they mean alot to me
and you are right other than the dislocation problem our problems run almost parallel

CUT>

can i ask, are you in a chair

Hi PiggyBaker,

Yes, I am in a chair. I can shuffle a bit in braces and crutches, but the shoulder dislocations mean that its hard work and painful. I wouldn't get very far anyway!. Its due to the paralysis and paresthesia and also b/c My hips, left especially won't stay in joint at all now and surgery with my connective tissue disorder is not wise. The point when I saw the Ortho and he exacerbated everything is thought to be when my spinal cord was involved all the time, before that, I was have intermittent issues. Of course because of my dislocations, I have days when I have more numbness and less function than others, but i have permanent damage too as my profile says ( so I don't go on).

I hope that this helps and please do keep in touch,

Take care,

K

Edited by kewlcatkez, 05 January 2008 - 06:22 PM.

[piggybaker]

hi yes i will keep in touch, and sorry for the silly question, i have just seen your aviator, and i am still working the forum out so will find your profile and have a snoop,

I am glad we have met LOL nice to know there are others out there that are as frustrated with life as i am at times

[kewlcatkez]

piggybaker, on Jan 5 2008, 06:38 PM, said:

hi yes i will keep in touch, and sorry for the silly question, i have just seen your aviator, and i am still working the forum out so will find your profile and have a snoop,

I am glad we have met LOL nice to know there are others out there that are as frustrated with life as i am at times

HI Piggybaker,

No problem, you weren't snooping, its just that I am not very good about talking about my issues so when I do I tend to go on..

The avatar was taken at the beach, it was that windy that I had to tie my hair up out of the way. the profile I was referring to was the signature and of course that link posted yesterday.

It took a second specialist to order the correct tests and look at me as a whole person, even though as a nurse I was trying to ask for a few years. He literally saved my sanity, as well as plunging me it disarray when I found out exactly what was going on, both with the Connective tissue disorder and Spinal/paralysis wise. However, you do find some sort of closure and do move on of sorts.

For what its worth, I would advise that you seek a second and maybe a 3rd opinion, get all Neurosurgeons though or the Ortho for example will tend to agree with the Neuro they know etc, who may be the other opinion if you are in a small town. Then proceed with caution, you have til you are in theatre to refuse surgery. Try and think about the benefits which this will bring and if they outweigh the risks. I do understand about your situation with having lil ones. I have a blog linked in my signature below, and I have mentioned some of my worries there. However, it may be that the surgery is the only way in which you are going to be able to have a shot of being in reduced pain and or gain some stability, so the risks may be outweighed by the benefits in your situation. Of course it may cause more or no difference in the pain, or other issues, who knows for sure? It comes down to weighing the factors up - Only you can say.

Just another thought and that is that now you are finding walking painful, how ling til you end up using a chair even though you aren't paralysed? - compare that to the risks of paralysis in surgery..not sure I could do, but its how you have to look at it I suppose. It may be that by the time you are in a chair going along as you are now, that its too far along the line to proceed without big risk...or it may not. Ask your surgeons these q's. Of course you can not say how things will pan out, but looking at all the factors and getting an informed opinion will get you as close as possible,

Best wishes,

take care,

K

Edited by kewlcatkez, 05 January 2008 - 08:18 PM.