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Old 02-09-2012, 05:04 PM   #1
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myelomalacia im terrified please help

I am terrified and ill crying out for help please!

Im 32 years old. Been involved in fitness for many years. I went to see a chiropractor that was adjusting my spine. After an adjustment I developed major pain down my left arm, tricep and pectoral muscles. since that ive had muscle wastage and pain in my spine. I got an mri and i seen a consultant last week. I have to go for surgery within 6-8 weeks to remove 2 discs in my back.

I have been told to give up teaching martial arts which was my whole life. My job is also to go next.

I am really terrified that ill become paralysed while waiting on the surgery and im awake all night in pain. im scared to move and its really ripping me apart inside. am I right to be so scared. Is this a possibility if i move or slip while waiting for surgery? here is my mri scan below;

C4-c5 levels

There is a right posterior disc and oseophyte formation. This indents thecal sac and is causing compression of the right-side of the cervical spinal cord. Signal change within the cord is in keeping with myelomalacia. The c5 nerve routes do noy appear to be compromised in the intervertebral formina.

C5-c6 level

There is right sided posterior disc and osteophyte formation. This indents the thecal sac abd is causing compression of the right side of the spinal cord. Myelomacia is again noted within the cord. There is displacement of the c6 nerve route as it enters the intervertebral foramen on the right.

C6-c7 level

There is a paracentral disc and osteophyte formation. This indents thecal sac and in contact with the cord but there does not appear to be significant compression of the cord. There is probable displacement of the c7 nerve route as it enters the intervertebral foramen.

Thoracic spine
There are deformities of the endplate at multiple levels in keeping with schmorls nodes. No significant disc protrusion is identified and did not appear to be compromise of the spinal cord or nerve routes.

 
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Old 02-10-2012, 06:31 AM   #2
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Re: myelomalacia im terrified please help

John, that is a remarkably unhelpful MRI report. The radiologist says you have cord compression, but doesn't say how bad it is. That's like saying you haven't eaten, but not saying anything about how LONG you haven't eaten. We're left to infer, from what he thinks is myelomalacia, that the compression is serious.

He also says you have C7 nerve root displacement, but doesn't say what side it is on or what is causing it. We are left to infer that it's right-side, and is caused by the disk.

Your shoulder/arm symptoms are consistent with C4-5, C5-6 problems, although why they'd be on the left when the cord compression is on the right is something I don't understand.

At any rate, w/o knowing the severity of the cord compression, I don't think anyone here should guess about the possibility of paralysis. The docs should tell you not just that you MIGHT be paralyzed (which they seem to like doing), but what the chances are.

Are you in a system where you can get a second opinion about this? For your peace of mind, if nothing else?

ACDF surgery should be pretty routine, and you should come out fine, although the sooner you get it done, the greater likelihood of that. I'm very sorry about how your lifestyle has been affected.

Last edited by WebDozer; 02-10-2012 at 06:33 AM.

 
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Old 02-14-2012, 09:41 AM   #3
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Re: myelomalacia im terrified please help

I just read your post about myelomalacia. I too have myelomalacia at C6-7 levels. I have bi-lateral symptoms, with the left side being the worst. Pain going into the shoulder/upper arm region.

I don't have my MRI report in front of me to compare how your report is like or unlike my report.

But I feel that I am in the same boat. I am concerned about the future possibilities if it gets worse.

My surgeon is afraid to touch me at this point. I have had a number of surgeries to date spinal related and some other surgeries and other health issues that need to be considered for future treatment.

My surgeon is afraid to touch me at this point. I had surgery 2 in the cervical area before for stenosis and Kyphosis. The kyphosis required harrington rods from C3 to the T 4 levels.

Surgeon felt to get to the area to do surgery on me would be dangerous. So I am now on pain medication and muscle relaxants to help deal with the pain.

I am worried since I have felt that there has been a change in my arms as to strength and gets tough to do things very easily.

I saw the surgeon spring of last year and the plan was to return in a year to see if there any changes. I have an appointment set up for April to see what next to do or not to do.

Hope you get the answers you are looking for. Keep us posted.

Allan

 
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Old 02-14-2012, 09:59 AM   #4
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Re: myelomalacia im terrified please help

web is right in this being a way too vague to really know certain things here. but from just the levels of where you have the myelomalacia occuring(only if this IS actual myelo going on), it does indicate a couple things here. you probably have more than just a moderate type of direct impact to the areas where you have it, along with more than likely no actual CSF fluid being able to even GET to those areas to keep it well hydrated and just "normal'. this can also in some cases compromise the usually at least the smaller feeder vessels to those more specific areas of your cord. what is occuring in the myelo areas is actual granualizing or softening of the delicate neural tissue. with nothing being able to just get TO the areas(esp that needed CSF), they(any overly compressed areas) start to sort of die off over time. the more compression that is just even on that cord, kind of dictates what is truely being affected in you too.

are you having ANY motor problems or sensory issues further down like in the R leg or foot? that too would dictate level of impact ON the cord itself. the sensory and motor(muscle) functions would become more pronounced dependant upon actual compression on your cord too. if you are NOT yet having any real symptoms further down into that leg, chances are better that the compression has not gotten too bad. if you ARE having any real symptoms, it could be much more impactful on the cord. but when we do not actually fully know what "inner' nerve fibers inside that cord are actually being impacted nor the actual spinal tracts, you just really have to rely more on a full neuro hands on eval by a good neurosurgeon along with what HE or SHE feels is going on per evaling your MRI from THEIR impressions as well. part of the bigger problem with just MRI or any real scan is they are NOT at all a real true 'picture" of your cord/spinal, just a 'scan only". so some MRIs will not actually even pick up every single real finding that just could actually be there, just kinda 'hidden' or not well enough shown to see it. tho using a contrasting agent can help to bring out certain findings, it still is not 'perfect'.
so there very well could just be other findings that did not show or with this particular report which may explain more REAL reasons for symptoms. some findings also can be hidden by plain old boney crap we have esp with where your osteos are? what i find kind of wierd here is while the rad mentions the word 'disc' along with osteos being the impact part going onto/into your cord, it does not at all mention ANY actual herniations? it just makes it 'appear' here that "only' the osteos are the problem and no real disc herniations themselves? this report IS strange to say the least.

but i have to agree with web here on what a really crap job this particular radiologist did in even reading your films at all, as in NO real specifics given which should simply BE there. things just really sound like this particular radiologist does NOT at all have alot of overall experience in even remembering to mention what actual 'sides' of your spinal have the nerve route changes in them either? i have never seen a nerve foramen issue worded like this dude has either. with the 'nerve route changes"? it does not state at all how or what IS this actual 'change" from the norm route kinda thing? i think all this particular rad saw really was the cord issues and everything else to him or her was a bit less important or just not a really 'bright" radiologist? what did your neuro have to say about the report compared to 'his/her" actual impression?

what any given NS sees, feels upon doing their own read, and more importantly how your body simply responds or does not respond to the tons of hands on testing they do during your hands on eval has TONS more impact along with seeing your hardfilms than what is even in that rad report. the neuro eval tells the NS just what is or is not yet impacted by the levels of real impact upon your cord and nerves within that spinal. it just gives a much clearer overall picture. anyones actual real 'symptoms' give a much more 'realistic picture' of impact than the films themselves in many cases. as web stated above i DO think you should seek out at least one more opinion on this too. depending upon just what you were told by this NS may be very different from another with totally different types of experiences. it is just always a good thing to try and get at least one other totally unrelated to the current NS you are seeing opinion before consenting to any surgery.

the one thing ANY NS who decides to even do this surgery on you NEEDS to have in place tho is something called" intraoperative monitoring" done to monitor your motor and sensory while that compression is being lifted. this just DOES show and tell the surgeon alot about what is going to impact nerve/cord TO your motor and sensory BEFORE it gets done. they would also do a pre op run of all your nerve flow velocitys so they KNOW what they are before the surgery so they can just KNOW post op if anything actually changed in you during that surgery. i would NOT have any impactful compression lifted off my spinal cord without intra op monitoring done while it is occuring, ever. so DO ask any NS who you are considering for this whether or not they would use this during your surgery.

as far as you possibly becomming paralyzed. while anything is indeed just a 'possible' it would still take 'impact' to actually even 'do' anything TO that cord to actually paralyze someone, or you with your current situation. but even people with certain types of herniations would run this same risk if the impact, like a car accident should occur. i would become paralyzed with what i just have too if an airbag should simply ever deployed in my face(my cord is already damaged). anyone with 'something' making them a bit higher risk runs THAT type of risk. but it IS all relative ya know? i had an actual scalpel go way into the inside middle of my spinal cord from the L lateral back side and then a glob of blood vessels dug out of it in 03. while i DID end up getting my L leg knocked out it was rehabbed back. so the cord CAN take alot in some cases and you still would not become paralyzed from it. like i said, its all kind of relative to what can and cannot actually paralyze anyone. is the risk there? yes. but does that mean it IS going to occur before your surgery? no.

it really would not be a bad idea to simply obtain a repeat MRI with a contrasting agent added too just to see what another set of films with highlight would show. i just do not know the 'whys' here in how much this rad really did NOT document or word correctly either in even IDing the findings he DID find in there. if your legs are NOT getting affected at this point, i would doubt that the myelo is THAT bad there? but if you have ANY more "hyper' reflexes in that R leg, we would know for sure that at the very least, your upper motor neurons are being affected. how did your lower leg actually 'bounce' when the NS hit it with that little hammer during your eval? did it kind of 'jump, as in a 'brisk bounce out, or only very subtley 'bounced out" normally? this would indicate impact if you DID have a brisk bounce respones to this particular test. marcia
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Old 03-04-2012, 02:57 PM   #5
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Re: myelomalacia im terrified please help

The surgeon has said he is not convinced there is myleo at the top two discs and has asked a specialist radiologist to look at the mri. He says if there is no myleo then no need to operate for now and that the area around the two discs at the top might heal by themselves. There is cord compression though. This is great news. Ill have to wait to see what the radiologist says.

He wants to operate on the bottom disc as its causing the nerve problem, numbness, muscle wastage on the left arm. He is talking about decompression and disc replacement. He says that the machinery to check for motor damage during operations is only used for the likes of scoliosis and not for this kind of surgery as it is a hinderence and wouldn't actually change anything about the way he would operate.

In the meantime ive been told i can swim which is great. I am feeling less tingling in left fingers but i have a pain in my spine between the shoulder blades most of the time.

The replies that you sent me have really helped. i am VERY grateful!

Last edited by John789; 03-04-2012 at 03:02 PM. Reason: need to add info

 
Old 03-04-2012, 07:39 PM   #6
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Re: myelomalacia im terrified please help

John,

My prayers go out to you. I'm 4 weeks out of a Posterior Ceveical Laminectomy from C3 to C7, with fusion from C3 - T2... I too had a diagnosis with myelomalacia, with extreme weakness in my left hand to the point where I could not open it....Where are you located? You need to try and find the best neurosurgeon you can....

 
Old 03-04-2012, 08:22 PM   #7
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Re: myelomalacia im terrified please help

I can't agree morewith "Feelbad", if you go ahead with surgery make certain you have what I believe is called "Intraoperative Somatosensory-Evoked Potential Monitoring." It's that extra safety margin you need to try and prevent any intraoperative mishaps...

 
Old 03-05-2012, 01:51 AM   #8
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Re: myelomalacia im terrified please help

Quote:
Originally Posted by Chitown2012 View Post
John,

My prayers go out to you. I'm 4 weeks out of a Posterior Ceveical Laminectomy from C3 to C7, with fusion from C3 - T2... I too had a diagnosis with myelomalacia, with extreme weakness in my left hand to the point where I could not open it....Where are you located? You need to try and find the best neurosurgeon you can....
I am in the United Kingdom. Really sorry to hear of your surgery. I hope you make a good recovery. I understand somewhat the stress you have felt leading up to the surgery as ive been feeling it too. I hopefully have a light at the end of the tunnel which is amazing but its now a matter of waiting for a second opinion. How are you feeling now? How has the last 4 weeks been for you? That sounds like quite an op you went through. I have to say that im really impressed with this forum. I have found this to be really helpful.

 
Old 03-05-2012, 01:59 AM   #9
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Re: myelomalacia im terrified please help

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Originally Posted by Chitown2012 View Post
I can't agree morewith "Feelbad", if you go ahead with surgery make certain you have what I believe is called "Intraoperative Somatosensory-Evoked Potential Monitoring." It's that extra safety margin you need to try and prevent any intraoperative mishaps...
When I mentioned this to the Surgeon he said that it wouldn't change anything that he would do in the operation if he used this. He said they go off all the time unnecessarily. He said nobody in the hospital uses them for this kind of operation but that he would use it for the likes of scoliosis where he would be pulling the whole spine and its needed then. This is what he said. By the sounds of things this doesn't seem to be an option for me at all with this surgeon or any other at this hospital.

 
Old 03-05-2012, 08:18 AM   #10
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Re: myelomalacia im terrified please help

i am sooo glad that you ARE waiting for and obtaining that second opinion before doing anything up there john, seriously. what he told you about actual osteos 'healing themselves" i really honestly do not understand, with them actually being like solid boney overgrowths, how in the heck he even THINKS that could happen? while in some cases, a herniated disc CAN kind of 'go back' a bit into the column under certain circumstances, those osteos wont. and this just IS already impacting cord tissue in some shape or form.

what i find interesting here is he is kind of choosing to 'do' the area with the LEAST cord impact, or the way your films simply 'appear? those other two areas above ARE appearing to not only push into that thecal sac(which CAN easily also cut off that 'normal' ebb and flow of your needed CSF depending), but are going directly INTO that cord itself. anything that is usually even touching our cords in a much more direct way, also tends to give off at least 'some level' of higher signal intensity, thus kind of making it rather critical in just getting THAT lifted. if i recall right, you also DO have some level of neural/foramen issues too in one of those particular 'upper" areas? or what the rad referred to as "route changes'.

and quite honestly, intra op monitoring would NOT be a 'hinderence' to your surgeon really since the electrodes are simply placed all over very specfic areas of your body and not in ANY real way, would get in the way of him 'doing your actual surgery'. i really do NOT understand the 'whys' in how he would not WANT to do any surgery with actual cord contact in the very SAFEST way FOR the patient. this particular type of monitoring just would let the NS actually 'know', in most cases pretty well BEFORE he 'did/moved' anything as in just "attempting" to first touch and then if no issues show, do slower lifting or 'doing' anything that would be an impact to your motor and sensory would, if an issue simply shows itself on a monitor BEFORE that potential for possibly permanent types of damage actually occurs in you. while your NS is doing the surgical, another form of specialist called a neurophysiatrist is the one in charge of all of your monitoring(so your NS is doing nothing with THAT part, except it can take a bit longer doing the surgery this way. but that IS the safer way for you). all this particular type of doc does is watch that monitor/your bodys reactions for potential problems. i seriously do not 'get' how your NS sees this, and just that 'extra' safety for you and to cover HIS but too, as any kind of a 'hinderence? that one i really do not understand.

while doing a very straight forward type of ACDF, which IS what the 'planned for' surgery actually is called may not be as impactful, you most certainly DO NEED to find out if he is not doing those two above areas ONLY becasue he is not experienced enough, or it realistically does not NEED to be done, ya know what i mean? and this IS where that second opinion you are planning REALLY is highly critical in you simply realistically finding out what DOES actually 'need' to be done overall. considering the two above levels actual findings that DID show themselves on that film that are just 'there', i truely am wondering 'why' he is choosing to leave that there that can very MUCH require you to also end up with another surgery at some point probably sooner vs later(this 'usually" just does occur in many different people who have simply had like even just one level done too. the displacement of wieght and having that area simply fused at all can create the possible need for surgery in the level above and below the areas of previous fusion. but you already have some pretty significant impact at least in that level above). that IS what you have to find out from the other NS you will be seeing. just what 'really needs to be done' vs what this other NS seems to simply 'feel' in his 'own opinion' actually needs to be done? it could just be a totally different opinion you may get from this other NS than what you are being told by this particular NS. it is always a good thing to obtain at least two totally seperate and the NSs definitely not connected in any way shape or form type of more 'neutral opinion".

i just feel that any NS, and you simply having what you just know already that you DO going on in the 3 lower levels overall of your c spine, the intra op is a rather needed thing. you also do not want the two levels above getting worse over time and requireing another c spine surgery if at least the osteos that are causing at least 'some' level of real impact are left to progress over towards your cord even more. at the very LEAST, any NS that is planning any types of surgery on you, really NEEDS to also find out just how much real CSF is actually still flowing into and over that cord tissue too. lack of any CSF flow in the areas where the stated myelo are or the 'direct impact areas", will eventually cause at least some level of neural tissue 'die off' from lack of constant hydration. thats just how critical the CSF just is to the cord and brain tissue. it keeps things nourished and well hydrated, so without it even flowing to any areas of either level of your overall central nervous system CAN create its own issues over time. that cord just needs both a good solid blood supply and that CSF to keep it all nice and healthy.

just when is your next opinion appt? i would make a really good list of needed questions to simply ask this new NS about. and also what truely IS an actual NEED and what he or she also feels about waiting on the other impacted areas and what the consequences could be in just waiting on those at all, vs getting it all done now. and of course, just asking whether or not he uses intra op monitoring depending upon the needed situation. esp if for the two levels above this 'planned on' area of surgery from the other NS.

this IS what i would be doing john if i were where you are. and quite honestly, i AM just about in the same shoes as you. i just cannot FIND a really top notch NS who even WANTS to touch my c spine with a ten foot pole since my c spine is a huge liability, since i already just have spinal cord damage, to any NS who would even consent to do the needed stabilization i seriously NEED right now. my c spine is simply falling apart and has screws popping thru the floor of c 5 that are 'supposed to still be in c 6. lovely.

just go into that other opinion with alot more real knowledge than with your initial opinion and ask the good questions. i just really don't quite understand how this particular NS is only doing like the 'easier part' and not touching the areas where you actually DO just appear to have real solid cord contact at(if there simply was no real contact, you would NOT even have any true signal changes there in those areas, but it appears you do, and it is from what 'appears to be"mostly harder bonier osteos since it never actually mentions actual "herniations in discs" esp). he is simply 'leaving' in there what sounds like way much more than he could be fixing that would help you to better avoid certain potential issues down the road for YOU, not him, ya know?

like i mentioned above, i really do not know if this particular NS is simply not well enough trained/experienced or even ABLE to even GO into the spinal canal(that just DOES take some extra training to even breech the canal and go into it), or is too under experienced to even "try" to tackle this "whole' three level problem. but getting that second opinion in a case like yours really IS crucial john, so i am really glad you ARE going this route. its just exploring all options too. but once again, that report truely was NOT at all as good as it should have been either. and that is either film/scan quality, or the interpretting radiologist who did that report who maybe was not as experienced as he or she should be yet. the actual "specialists overall read" is kind of a second opinion ON the initial rad read too. just alot of variables involved in any real read there too.

hopefully your other opinion appt is much sooner vs later. good luck with that john, and DO bring in a good list of questions. i know i always do that with ANY potential surgery when there just are very specific things i either want or really NEED to know for ME. please DO keep us all posted, marcia
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Old 03-05-2012, 08:55 AM   #11
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Re: myelomalacia im terrified please help

Feelbad, Thanks for your interest and for replying to this. I cannot explain to you how much I appreciate any help in understanding what is happening to me.

Just to clarify. The ns has said that this is all caused by the 3 discs and has not mentioned osteos to me in his explanation. He showed me the mri on a screen and went down my neck in sections showing the discs etc. He also showed me where the bottom disc was pressing on the nerves running down my left arm. I think he was saying that the top two discs might heal by themselves.

He said that he is not convinced that the top discs have caused myleo in the cord. The original radiologist had said that it was present and that original post I put on was his findings. The ns has asked for a second opinion on the mri scan by a spinal radiology specialist. It is not the case that I have gone for a second opinion from another surgeon. I wouldn't know how to go about that at all. Where i live the is one private hospital and that is where I contacted this surgeon. It is a small community around here really. Id say that all the doctors in the city I live in are friendly in some way.

Ive been told I can swim but im getting a pain in my neck sometimes when im doing it. Do you think this is dangerous?

Also when I was shown the mri he explained that there is no fluid protecting my cord and I could see this on the scan pretty clearly. I must ask how this could possibly heal by itself. Can anyone shed any light on how this can happen please?

 
Old 03-05-2012, 09:50 AM   #12
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Re: myelomalacia im terrified please help

John,
I'm feeling ok at the moment. I generally just get extreme muscle tightness rather than pain, I take Valium 5mg which help. I'm in th US and did not have insurance but thank God I could get charity care at one of the best hospitals. Otherwise the cost for the surgery alone was $188,000. How is your medical care in the uk?

 
Old 03-05-2012, 03:25 PM   #13
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Re: myelomalacia im terrified please help

Quote:
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John,
I'm feeling ok at the moment. I generally just get extreme muscle tightness rather than pain, I take Valium 5mg which help. I'm in th US and did not have insurance but thank God I could get charity care at one of the best hospitals. Otherwise the cost for the surgery alone was $188,000. How is your medical care in the uk?
We are very lucky here to have the NHS (National Health Service) which was set up to provide free medical care at the point of contact to everyone. It is funded by the tax payer and the principle of it is really good.

There are some drawbacks. There can be long waiting lists especially for non urgent cases. There have also been some cut backs and more to come which is unfortunate. Some people are never done complaining about the NHS but im not one of them. I think its amazing that everyone gets treated. $188,000 is a serious amount of money for an operation. If I had to pay that well I wouldn't be able too and who knows what way id end up.

I know there has been allot of debate of healthcare in the USA and I have followed this as much as I can as it is of interest to me.

I do hope you recover well from your operation. Its a major ordeal to go through and lifechanging. I'm trying not to dwell on any negative things that may or may not happen to me.

Muscle tightness must be annoying but as you say its not pain so that's good. Im actually not long out of a knee operation and after that I couldn't make my leg muscles move. It was a strange feeling. I followed the physios advice and also using my own knowledge I managed to get my leg functioning properly again. Im really stubborn and determined. Nothing will beat me including this neck issue! this is the only way to overcome obstacles in life.

This forum is serving as a method for me to gain an education into an area that I know nothing about. With this information ill beat my neck issue and become stronger for it.

 
Old 03-05-2012, 11:23 PM   #14
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Re: myelomalacia im terrified please help

Quote:
Originally Posted by Johnbelfast View Post
I am in the United Kingdom. Really sorry to hear of your surgery. I hope you make a good recovery. I understand somewhat the stress you have felt leading up to the surgery as ive been feeling it too. I hopefully have a light at the end of the tunnel which is amazing but its now a matter of waiting for a second opinion. How are you feeling now? How has the last 4 weeks been for you? That sounds like quite an op you went through. I have to say that im really impressed with this forum. I have found this to be really helpful.
John,
I'm doing ok. My NS says my left hand won't get better... I'm hoping she is wrong. My postoperative upper right arm C5 palsy seems to be getting better slowly. How are the quality of docs in the UK? You don't have to pay for doctors/surgeries do you? How is the socialized medical coverage , do you have to pay for meds? Is it a long wait to see a NS for example? Anyways, my prayers are with you that all goes well. My name is John as well.. Bye for now.

 
Old 03-06-2012, 06:59 AM   #15
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Re: myelomalacia im terrified please help

We don't pay for anything here. Even prescriptions are now free. Sorry dentistry is only free if you are jobless or receiving benefits. I personally went private to see a consultant for my neck issue so that I could get attention really quick. I then got transferred onto the NHS. When it comes to something so serious its not work waiting a few months as would have been the case.


 
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Can somone (anyone) please help me Jaden090705 Spinal Cord Disorders 4 04-24-2006 10:01 PM




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