Spastic Paraparesis

LC in UK · #1 (**permalink**) 09-10-2007, 08:14 AM

Has anyone else been given this diagnosis with a suspected cervical cord compression?
Am going through a series of MRI scans under the care of a neurologist, today I'll have a head scan , further cervical scan and a thoracic scan with a follow-up consultation on Wednesday.
My walking is still a lot different to my normal, slower and awkward, feels like my hips are fixed, and my feet feel like they're "plonking down".
May need a lumbar puncture to rule out other things but just hope this won't turn out to be "inconclusive" and that I'll be left like this - but mustn't get negative!?
Any input on walking problems whether diagnosed as SP or not would be interesting.

mmglobal · #2 (**permalink**) 09-10-2007, 03:41 PM

LC, I've had several clients with serious gait problems related to cervical cord compression. Some are due to strentgh losses (like the foot drop you describe.) Some are due to spasticity. These issues are serious and may lead to a decision for surgery sooner, rather than later... even without a lot of pain.

It sounds like you are getting a good work-up. Please keep us posted,

Mark

LC in UK · #3 (**permalink**) 09-11-2007, 07:38 AM

Thankyou for the help Mark.
Had a complete spine MRI yesterday and strangely found my walking was much easier as I left the hospital?!?!
Surely the MRI process didn't affect the artefacts and release a nerve or something or maybe the disc/whatever has shifted position in my neck?
Am really confused now.
Seeing the neurologist tomorrow and have to take all the pictures with me and apparently he'll have the reports.
What on earth can be going on with me? Shall see if things change during the day,
Be in touch
Lynette

LC in UK · #4 (**permalink**) 09-12-2007, 04:52 PM

Saw neurologist today for report of spinal MRI.
He's referring me to a neurosurgeon but said he "doesn't think the surgeon will be impressed" by the amount of compression and that surgery wasn't necessary. My walking is easier than before but my legs still feel weak and wobbly.
Said there is minimal CSF space around the cord at C3/4/5 and mild SP of the left leg.
Strange consultation, he said he wouldn't send me for a lumbar puncture on the strength of the MRI pictures, - which pleased me as I wasn't looking forward to that procedure anyway.
As I have been given the MRI films I've asked for a copy of the report as well, I'd like to see what the radiologist's opinion is.
It all seems a bit "airy fairy" to me. I impressed on him that as much as I didn't "want" surgery I was hoping to get an explanation of my leg and bowel symptoms.
He didn't seem to have an answer so I asked him if it could be coming from the lumbar spine and his answer was "could be".....
So that takes me back to square one because it was my orthopaedic consultant that referred me to the neurologist in the first place!

So to sum up, I'm being sent to see the surgeon, not having a lumbar puncture, am to have nerve conduction tests, and presume the outcome is as I suspected, I will be left with these problems on an "inconclusive" basis.
I suppose I should try and be less negative and hope this conservative approach is best and just maybe the symptoms will resolve on their own, who knows?

fireyangel76 · #5 (**permalink**) 09-13-2007, 06:58 AM

Hi Lynette,
Sorry you still have no answers as to what is causing the SP. I hope you find the reasons soon. I guess sometimes they just don't know and I think Dr.s have a hard time saying that. I find the usual response to be " I don't see anything on your tests that would explain your symptoms. As patients we are left to think it must be in our head or at least they must think it is if they see nothing to expalin it.
It's not in your head! I understand the frustration! My thoughts are with you...don't give up!

LC in UK · #6 (**permalink**) 09-13-2007, 01:05 PM

Thanks Betsy!
Am really fed up, I can't believe they can't see any reason for such serious problems on these MRI scans.
Am now wondering if these problems are coming from the lumbar spine after all and nobody wants to deal with it. And thats why they use the "can't see any obvious cause of your symptoms" phrase?
Should get the written radiology report of the whole spine MRI in tomorrows post, I have the wallet of films but they're no good to me.
Neurologist didn't share any of that info with me yesterday, makes me curious!
Hope you are still on the up following your Dynesys?
Am not ready to go back to the gym yet, much as I need it, although my hip joints seem to have loosened up a bit and I can walk easier I still have shakiness in my legs and painful knees that don't want to bend fully, they seem to flex too far back though, like a flamingo!!

Best wishes
Lynette

mmglobal · #7 (**permalink**) 09-13-2007, 04:22 PM

Lynette, regarding the change in your symptoms after the MRI: Many of us live in a world that is dominated by a piece of bone or tissue that is pressing on a nerve. If it moves 1/2 mm in one direction, our symptoms may go away. If it moves 1/2 mm in the other direction, we are in the ER. Strange comings and goings of symptoms are a common theme. They can be especially confounding if we are scheduled for surgery and suddenly feel much better! Many people have said... "I wish I was worse because then my path would be clear." (I don't recommend wishing for that!)

The MRI is just a piece of the puzzle. Many of us have benign findings on MRI that ultimately turn out to be the source of our problem. I've had clientes who've had the nuerologist and surgeon arguing about findings. The neurologist looks at the whole picture, with the MRI a small piece. SOME, not all surgeons, put too assign too much weight to the MRI. It is just a static picture and does not tell the whole story.

Mark

LC in UK · #8 (**permalink**) 09-21-2007, 06:20 PM

Am waiting now for a consultation with a neurosurgeon.
Am not encouraged today by reading the remarks made by the neurologist in a letter to my GP.
Opening line - quote.... "Mrs **** continues to complain of 'wobbly legs' "
Sounds a little demeaning to me but what do I know?
It's a contradictory letter, makes mention of discal bars at C4/5 C5/6 and
C6/7 and there being no CSF space around the cord at 2 levels.
Blah blah blah... last sentence....quote - "Mrs **** would like to see a surgeon because she is very concerned about the minor disc disease but I do not think that surgery is warranted".
Well I can think of better things to do than have neurosurgery but on the other hand I don't like losing my mobility.
Bearing in mind my referral to the neurosurgeon will be headed up by a letter from this guy I'm very worried.
Thank goodness my GP is on my side and has written to the neurosurgeon stressing the problems I'm having.
Am dreading it all.
If I was wealthy I'd have gone to Munich by now but no chance, just have to keep my eye on the ball and ask all the right questions as Mark has advised me!
Thankyou Mark!

LC in UK · #9 (**permalink**) 09-21-2007, 06:26 PM

And when the spinal cord changes shape from a circular black disc to a black kidney bean on the MRI images surely something is causing its shape to change??
Just a thought !

mmglobal · #10 (**permalink**) 09-21-2007, 07:26 PM

I can't believe that he refers to what he sees as minor disc disease.... I don't know what else to say... This is very strange.

Mark

fireyangel76 · #11 (**permalink**) 09-22-2007, 05:08 AM

Lynette,
I hope the neurosurgeon has more sense than the neurologist!
Good luck and stick to your guns!

LC in UK · #12 (**permalink**) 09-22-2007, 05:05 PM

Thankyou Mark and Betsy
I may well be dealing with a duffer here but I really didn't want to comprehend that possibility.
He's definitely playing things down as far as I can see but for what reason God only knows.
Will visit my GP Monday with the letter - which the GP will also have a copy of - and ask what he thinks of the general tone of the letter. Plus what are the implications of this guy downplaying my reports in his referral to the neurologist. Anybody been here before?
A close friend has suggested the possibility of one covering up for another here but surely they wouldn't do that when a patient is inevitably going to need attention at some stage?
Paranoia setting in !!

LC in UK · #13 (**permalink**) 09-24-2007, 07:05 PM

Latest Instalment................
Advised by GP to write icily polite letter of complaint to the neurologist.....

And to mention this to the neurosurgeon when I do get to see him.
GP says he'll happily refer me for a 2nd opinion if needs be, also to send copies of my letters to him and to my orthopaedic surgeon who referred me to this neurologist in the first place.
Meanwhile time goes by................

LC in UK · #14 (**permalink**) 09-25-2007, 11:19 AM

Appointment to see neurosurgeon arranged for 19th October and advised by secretary that he will give me a thorough examination and make his assessment based on that and the MRI films I take with me.
Must be positive but another 3 week wait.......

LC in UK · #15 (**permalink**) 10-19-2007, 07:17 PM

Hi all
Just to say I saw the neurosurgeon this afternoon and he says I need a 3 level fusion from the front, putting spacers in and other things I think , can't quite remember.
Will be done at Kings College Hospital in London but there is a 4 to 6 month wait on the NHS.
Just have to continue taking things easy while I wait but he says if things deteriorate I must let my GP know.
So there we are!!

fuzzy · #16 (**permalink**) 10-19-2007, 08:14 PM

I WISH you could go to Munich get second or third opinion there from neurologist Baumbach and also the ADR surgeons there, Zeegers, bertagnoli etc. ADR sounds so much better to me then a 3 level fusion.

Baumbach found me to have a problem in my neck in addtion to the known problems in my lower spine. This problem seems to be compounding my problems caused by my lower spine.

Neuro says neck surgery, Orthopedic surgeons (2, both in Germany) say fix the "obvious" lumbar (MRI, pain history) problems first. Confusing, to say the least.

Sometimes there is no simple answer. Get second and third opinions.

fireyangel76 · #17 (**permalink**) 10-20-2007, 07:10 AM

Hi Lynette,
Good news to hear you are finally getting some long needed diagnosis of your wobbly legs. So sorry to hear about needing the fusions.
I am holding my own with my c6-c7 problems. I have a wonderful physio team. My legs are very stable and I will try very hard not to follow in your footsteps!
Hope your wait for surgery is not too difficult for you. Just think of all the shopping trips with your daughter you'll have when your are steady on your feet.
glad to hear it wasn't the dynesys! Keep me updated on your spirits and all while you await surgery!

mmglobal · #18 (**permalink**) 10-20-2007, 04:26 PM

I'm not sure I understand... do you have actual spinal cord compression causing balance/coordination/strength problems in your legs? Are they talking about myelopathy, myelomalacia or other things that may be related to spinal cord compression? If so, waiting 4-6 months may come with additional risk. Ask him what the risks of waiting are??? If you were his wife, when would your surgery be??? When do myelopathic symptoms rise to the level of being more urgent than "go to the end of the line"?

Mark

LC in UK · #19 (**permalink**) 10-20-2007, 05:03 PM

Hi Mark and Fireyangel
Still a bit shellshocked despite all the research I did up front.
It's cord compression and he mentioned myelopathy. I asked about ADR and he said it's too far gone for that. He said he's writing to my GP.
Apparently the money doesn't follow the patient in the NHS like it's supposed to he said - hence the wait but I will see what my GP has to say about it all.
At least there was no umming and ahhing from this guy like the neurologist, he straightaway said my symptoms were caused by the cord compression and said my reflexes were "jumping" in my arms and legs.
He also said they would do the pudendal nerve tests.
Will be in touch again when I know more.
Thankyou for your support and yes I will look forward to being able to walk round the shops afterwards Betsy!!
Regards
Lynette

mmglobal · #20 (**permalink**) 10-22-2007, 08:09 PM

Too far gone for him? Too far gone at his experience level? Ask him to explain what is too far gone and what the risks / problems are.

fuzzy · #21 (**permalink**) 10-22-2007, 11:26 PM

Second opinion on the ADR question is worth it before you concider a fusion surgery. Don't rush. Be careful with your neck and you will be ok until you can make an educated decision.

LC in UK · #22 (**permalink**) 10-23-2007, 09:25 AM

Thankyou Mark and fuzzy.
Not getting a good service all round here with neurology whether private or NHS it seems.
Saw my GP yesterday and he didn't seem very proactive on the waiting times or on seeing another neurosurgeon.
Said he will write when letter from neurosurgeon arrives and get "creative with the symptoms". Think myelopathy speaks for itself.
I asked for physio to help get fit for surgery and was told physio's wouldn't take the risk with me because my condition is too precarious.!!!!
Definitely have to do a lot of groundwork here and will try for other opinions .
Be in touch
Lynette

LC in UK · #23 (**permalink**) 11-17-2007, 06:10 PM

Sent a letter today to the chief executive of the hospital asking him to explain why I have to wait 4-6 months for surgery to free the spinal cord.
Told him my legs are getting weaker, they nearly gave out yesterday and that my GP and ortho consultant have written stressing the urgency.
These letters obviously haven't seen the light of day.
I came home this evening to a letter from the neuro clinic changing my first clinic appointment from January 7th 2008 to ................................
March 3rd.............They cannot be serious??
Gloves are off now and I have a lot of fighting to do. How depressing.

fireyangel76 · #24 (**permalink**) 11-18-2007, 07:57 AM

Lynette,
I can't believe you have to wait so long! So sorry you still have those wobbly legs! I'd say to keep bothering them and complaining and maybe you'll have some luck that way. There just has to some way to move that up! I just don't understand the NHS and the fact that private pay go first and see the same Doctors! Just seems like a huge conflict of interest!
Don't get depressed....just keep the pressure on them!
Good luck and I'll be pulling for you!

LC in UK · #25 (**permalink**) 11-18-2007, 08:46 PM

Thanks a lot Betsy, someone needs to get a handle on this and quick because it's official complaints and MP next.
This is becoming neglect pure and simple. Difficult not to feel down but the more proactive I can be the more chance I'll have of staying sane!!
Hope things are good with you?
Best wishes
Lynette

fireyangel76 · #26 (**permalink**) 11-19-2007, 04:37 AM

Lynette,
I am not doing so well with our medical care here. I am also having cervical issues and pain down my left arm to my hand, intermittantly. I am far from having big problems such as you are having. I had an xray and I don't have much space between C6 and C7. I can't seem to make them take me seriously. I also have tendonitis in both shoulders. I think that is from using my arms for so long to move myself around and pull myself up. I am still not able to bend with out pain and if I sit for long my feet get pins and needles and shocking sensations. I also have started to get more frequent pain down my legs. I need to get pushy and demand new MRI's and other tests, etc. It is just a shame that i have to ask for things that doctors should be suggesting I do. I mean they are the ones with the medical degree! I think I'm getting the MD burn out attitude. It's that attitude where they just give up trying to help you because your not fixed by the things they have tried!! How I would love to be fixed..at least to be able to vacuum or sweep, or even go grocery shopping. I mean be honest...am I asking too much from the medical community in this country?

fireyangel76 · #27 (**permalink**) 11-21-2007, 04:06 AM

Well today is my lucky day I suppose. I took a fall on some steps in my house and hit my thoracic spine so hard on the edge of the step. Lucky because it wasn't my lumbar spine with the dynesys. So now I have a compression fracture in my t-spine. And to think I don't have wobbley legs..just no coordination, but I was born that way! I feel so stupid!

So here's to valium, vicodin, phenergan (for nausea) and flexeril also!
Happy Turkey day to everyone!

LC in UK · #28 (**permalink**) 11-21-2007, 01:43 PM

So sorry to hear you've fractured your spine Betsy on top of everything else.
Just what you don't need.
You were doing reasonably well not so long ago too. I really hope the doctors do something soon to help you. Painkillers are essential at the moment but I know you want more done for you than that.
I'm very fed up too being left like this, not being able to walk any distance and my outpatient appointment being pushed back another two months to next March. Just ridiculous.
It all comes down to money I think, the NHS in this country isn't doing what it should.
We all have a lot of fighting to do but it's so depressing. And there's a lot of us all in the same boat I think.
I wish the very best for you and hope to hear some better news soon, take care please.
Kind regards , Lynette