28 replies to this topic

[Tatiana]

Hi Guys,
yesterday i had my post op review with my consultant (emergency surgery for rutured disc that was compressing the spinal cord-cauda equina syndrome).

I went along with my list of questions and came away feeling very confused.

At the moment my mobilty relies on a zimmer frame, elbow crutches and a wheelchair which i informed him of such.

He asked me why was i using a wheelchair? i told him
because i cant walk and he asked my why not...i then asked him i dont know-you tell me?

He said i dont need a wheelchair unless im going for miles and miles and that i have to be more positive?

I explained that i feel like my top half is dragging along my bottom half and he just looked at me over his glasses-no reply.
I went on to tell him that if i walk more than so many steps im exhausted and i drag along more.

He said i should try walking more and be more positive...

again...i explained my hands were already starting to hurt, should i not be concerned about them or them getting worse? and what about my shoulders..should i be worried that i will cause any damage and he said no just carry on.

I then told him i have 3 DVT's in my legs and that my physio wants to know should we be careful with regards to what she can or cant do with me with regards to them and my back ..he just said no..theres nothing you cant do now.

This was the 'jist' of the whole consultation,

i explained that i was numb in saddle area,back, sides of my legs and soles of my feet...and i have weakness in my legs.

He said 6 months post op the nerves will join up the 'bridge' again and thats when i will improve and he expects that by the time he sees me again i will be walking completely without any aid with the help from my physio.
My op was almost 4 months ago and i cant see anything changing yet?

I also told him that from my understanding, cauda equina syndrome has its best chance of recovery if operated on within 48 hours so maybe the nerve damage is more permanent? he replied that usually no one is operated on within that frame of time....i was left for over 2 weeks though?..he didnt reply.

So with this new found info i asked him to clarify how much recovery i will make and to that he said no one knows-has he not just contradicted himself then?

I told him that i had sexual dysfunction, so with the news from him that he feels i can fully recover then will that return.....he said yes but it may be impaired.

I told him that my left foot drags..do i need support/splints for which he said no.

I told him about the nerve pain in my foot which was now 'visisbly' (my skin is altered where i get the buring pain)travelling up my leg. He asked if i was on anything for it and I said no and he never mentioned it again.

He did a 'prick' test through my trousers on my one spot on my saddle area with a injection needle and prick tested the area of my foot where i have some sensation..yet i told him it was the otherside which was numb?

I felt like a fraud and came away totally bemused,it also felt very much like the period before my op when i was telling several doctors about my numbness and pain and loss of control in walking etc and it was falling on deaf ears.

Has anyone ever experienced anything similar to this with their consultant and can i be reassured he will actually know about CES? surely he most know.

Now im wondering why im still so unable to do all the things i cant.
I cant cook or clean. I caanot bathe myself without assistance, i need equipment to help me off the loo, off chairs..to help me get about both indoors and out.
Im getting nerve pain and spasms.

Yet in 6 weeks this will all start too improve?

So with my new 'found' positive attitude, on the way home from my appointment we stopped at asda.
From what he has said i should be able to shop with my husband on my crutches.
So..i made it as far as getting through the entrance (from our dizzy spot) and then my legs started to drag along slower and slower and i was getting exhausted.
Hubby looked at me and remarked that i was 'walking' into him..i hadnt noticed, i was too busy looking at where my feet were going.
'I cant do this' i said, ive got to sit down..and there i stayed whilst hubby did the shopping.

Im more confused?

Im back to see him in 6 months.

Sorry its a long one.

[jenny407]

Tatiana, very sorry to hear about your experiences.

I can't comment on the details at all - sorry.
But I CAN comment on doctors' and consultants' attitude at times.

When my husband had a serious motorbike accident with broken ribs, broken leg, etc., years ago, the doctor told him - after a while, after another x-ray - that he should definitely start putting his body weight on that broken half-healed leg now. That any fear of doing so was purely psychological and should be overcome! The x-ray showed quite clearly that the bone was ok now! The bone needed pressure to heal.

My husband did as advised (much pain, but yeah! tough we are, eh?) --- and as a result, the long nail inside his bone broke, the leg broke, another hospital visit, another surgery. Oops, seems the x-ray couldn't really show bone density after all. So sorry.

A very good friend of us who is a doctor (and a very committed and competent one) said afterwards: "Ah we do learn from time to time: The patient is always right." Meaning - do listen to your patient.


Do I sound a little sarcastic, dear Tatiana? Yes, I am. I tend to get a bit worked up about this attitude - but trying to be fair: I guess doctors and consultants don't mean to ignore patients. It's just their preoccupation with all the technical details and data. But the results can be quite harmful.

Message from our experience: Dear Tatiana, listen to your body. Watch yourself, see what is really the matter - and DO make yourself HEARD! Doctors usually mean well but aren't perfect (ok, like none of us, me included).


I do wish you the best of luck.

Jenny xx

[esslouis]

Hi Tatiana
for a start consultants feel they have done a good job if you are still here and not got any worse. thats the reason consultants always say they have done a good job!!
Right can't commment on his attitude but listen to your body!! I would if you are still unhappy ask for a second opinion. firstly they can't refuse and secondly you will get a balanced report. speak to PALS in hospital or your gp as they both can refer you. ask to see a neuro surgeon who deals with lower backs and there probs. stand there and don't take no for an answer. Get your physio on your side and get him to send a report to your gp and surgeon and list all your probs - they can't ignore another professional its bad form. sorry not much help but this is the path i would go down if i wasn't happy. i am waiting to see a nuero surgeon who deals with trauma injuries to the lower back. esslouis - ps pm if you need to talk i have experience of people ignoring me and i've developed a thick skin as well as a loud voice!!

[Smileyblue]

Hi Tatiana..

I'm from another country, so can't comment on what routes to take.. What I can say is that they are only human, and humans make mistakes! You know your body, you know how far you can push yourself.. Trust your instincts! I agree with Jenny, get a second opinion!

I do hope you feel better and stronger soon!

[megatrig]

I agree with what has been said. Also from similar personal experiences with doctors!

You get good and bad and a mix in between. Some excellant too! Sadly some bxxxxxxs!!

Believe in yourself.

Ask for a second opinion imediately.

Write down everything said. Everything that happened so you remember.

Be nice first. Sadly you have too!.

Go see your GP. With letter and explanation. Ask for a referal to whatever specialist you should see.

Talk to your physio. He/she should be on your side and say no ... use a wheelchair. Build up slowly.

It is like someone deciding to run a marathon and instead of training and building up to it just turning up on the day and only getting 2 miles around a 26 mile course.

Your body needs time, patience, care, etc to recover properly.

Ignore him he is an idiot!!

[sh1wn]

I'm going to guess this was at OHSU? I went there about a year ago to get a j-tube and I was not impressed with them at all.

While I was there I started to pour sweat from my head whenever it was lowered below 35 degrees. I kept telling them it was new and I wanted to know why it was happening and that I didn't want to go home before they figured it out.

The doctor kept telling me it was part of my injury and I should just get used to it. I knew that wasn't true but they decided it was time for me to go.

We got all packed up and I was in my chair just waiting for the nurse to clear us to go, then she came in and said your not going anywhere, you have MRSA in your blood and we need to get you on antibiotics.

I don't think I will go back there, I am so glad I went to Emanual when I was injured and it was way better than OHSU. I would try to talk with another doctor if you can.

[wheeliebear75]

Condolences on meeting up with Dr. Jerkyl! As others have said.....there IS a fine line between working hard & pushing your body past it's NEW limits.

I'm from the U.S. so I don't know how easy it is to get a 2nd opinion in the U.K. but if you can I would make it a major priority. Your GP, physio & every other Dr. should be working as a TEAM to treat you. My Dr.s each take their experience in each specialty & work TOGETHER to agree on how best to treat me. (I've got some non SCI related conditions though they CAN complicate things)

Hope all this gets sorted out for you soon & you that get some definitive answers.

[Tatiana]

Thankyou for the replies and advice, i will certain act upon the advice.

The problem is, as i see it now,is that no one is working together.
My doctor is afraid to treat anything that i have related to my SCI as there is impending legal action.
I went to see my doc because of burning nerve pain that is 'travelling' and they told me to discuss it with my consultant on my next visit.

The consultant is on his own agenda.

The only person who has tried to liase was the physio.I am now going to ask her to send copies of my assessment to my physio and consultant.
Four months down the line and im only just being assessed for my neuro physio.Next week she is assessing my motor power.

[brockit79]

Tatiana,

This is what you need to do; go to your GP explain all of this say you need an urgent referral to another spinal unit/consultant.

It is your GP who can arrange such things. My case is, obviously, different to yours BUT in my case I don't understand the reasons that it is not possible to operate because it wasn't explained to me. I need too know what my options are and why SO DO YOU. If ask a consultant what your options are to improve/manage better, they will have to respond. At the end of the day consultants are great but they deal with statistics and SCI is so different in each case they can't possibly know each and every case. My consultant has actually told me a number of times that the outcome is unknown for a few of my issues (which is fair enough I suppose).

It is APPALLING that you are deteriorating if you shouldn't be, you, at least, need to know what your options are with the various outcomes.

This is the state of the NHS which we pay national INSURANCE for. we are given no option to pay it else where for good and proper treatment. It p!$$es me off.

Brrrrrrockit
Where is your spinal consultant based?

[Tatiana]

Thanks Brock..
My consultant is based at royal preston hospital in lancs.
He said that i am at the best place already because at my appointment i asked if i could be referred to someone more specialised.

I went armed with a list of questions and he didnt appreciate it. I also asked why was i not told during or upon being discharged from hospital that i had a spinal cord injury called CES.
He said its sometimes too much info for patients to take in?? but i had a right to know surely and to know how it may affect me.

Everything i have learnt is from googling and this forum.

I am going to ask for an alternative consultant this week for def.

[pinkcloud]

You walk. Your cured. Be grateful for him doing this. Go away I got loads of patients to see. Thats their answer.

Its not they are being nasty, they really do believe that they have done a great job, saved you from full paralysis and like to discharge you as soon as possible.

Thats some consultants. Hes possibly the kind who loves to have lots of ticks on his 'nhs score card that gives them a bonus and brownie points'. Easy to say you are not 'positive enough'....then its you, not him.

You and many on here know me operating surgeon said i had nothing to moan about and discharged me with 1 Amitriptylin tablet.He didnt even know i had sci. Not all consultants are the same.

Gps dont like to be responsible for prescribing hard core meds. I dont blame them. If you have not already get referred to pain management, they can give you injections and do care about pain.

Go with ya gut instinct, ya dont have to listen to all he says....you want a chair, you use it. Its true a mobile back is better than an unmobile back, safely walking indoors is a great start..but tell him you want to get into horse boxes and live an active life..he will think 'what'.

Dont quote me on this but i think their definition of a full life is living it at 1 mile an hour like many of society does..just a hunch i get from his description.

see ya other thread...asking which consultant to see..until then presere what you got, and you are positive...hes a pillock xx

Edited by pinkcloud, 17 July 2011 - 12:43 PM.

[Iain]

Tatiana,

The problem is that it sounds like you are seeing an orthopod (albeit may be one with an "interest" in spinal surgery. It is likely that your GP would be sympathetic to a referral to a spinal injuries consultant - who may be better placed to give the wider rehab advice you seek. Your nearest unit is in Southport

What's the difference between an orthopaedic surgeon and a rhino? One is a thick skinned, horny, bad tempered, stupid creature, and the other lives in Africa.

With apologies to any othopods on here but it is a fairly common medics "in joke"

[pinkcloud]

[quote name='Iain' timestamp='1310906930' post='241474']
Tatiana,

Hey iain, I'm an orthopod fan, seeing as i worked as his private med sec for years...I aint herd of that one..I call them the butcher/carpenters of the meds world man, how they can move them legs about - they are strong

I totally agree except I put neurosurgeons in the mix here - too many hours staring at a grey cauliflower means they get distracted from other parts of the body sometimes.

I totally agree a spinal injury consultant referrals great, i suggest that you contact the spinal injury association..unfortunatley, a operating consultants letter stands a lot of weight.....a paid referral to an othopaedic consultant whom specialises in spines or neurosurgeon- who has an interest in lower spine rehabilitation/pain managements a grand idea to get the ball rolling as he will probably write a letter suggesting whom to refer you too.

Dr Iian, your a good GP with confidence, I will say what you cant - not all GPs are as good as Iian....and are scared of being seen as a fool for referring a patient classed as 'just needs to be more positive'.Especially to a spinal injury unit...which is seen as the 'holy of holys' and rightley so - they are great Tatiana, get to Sheffield - they are THE best

[Kelsey]

Hi Tatiana

As you know, I too have CES and found that any consultants, physio's or other medical professionals, really don't know how to deal with our condition as it is so rare. We are almost like a 'learning aid' for them all.

As Esslouis has said, really consider speaking to PALS and explain the exprience you have had with the consulant.

Listen to your body and only do what you are able to do as only you know your limitations.

Like you, I use crutches inside the house and my wheelchair when outside. If I walk far with the crutches, I find that my legs dissappear and I virtually collapse as I can't feel them.

I am now suffering from carpal tunnel syndrome and my gp is talking about an op to sort it. It is one thing after another isn't it? It isn't just us it affects though is it? Our families suffer too.

We all need to stick together with the CES and support each other. I find it really helps to know that there is somebody to talk to who understands how we feel.

[pinkcloud]

hi kelsey, sorry i thougt you was soryfarm as i saw the labrador..keep awake miss cloud lol.

hey i didnt realise ces was so rare....makes ya think they would actually take notice of your complaints ggguuurrrhhh thats why I dont understand why they boot you guys out the door for just GPs to look after, not fair on GPs at all I say.

I'm glad your sticking together as a group and bought awareness of what sounds an awful condition.

[greybeard]

It's always "pot luck" with GPs. In my local practice I must have seen seven or eight different practice doctors and locums, none of whom seemed to understand what I was telling them about the limiting effects of my Ll2 to L5 central and foraminal stenosis. The only specialist I have been referred to - and that was a good four years after I first reported the symptoms - was a rheumatologist who arranged a MRI scan, confirmed the diagnosis, and referred me for epidural injections that did nothing.

Fortunately I still have B & B control, so I don't have full-blown CES, and while I can stand and walk with support, this ability only lasts a few paces before the legs give out, but because my symptoms have been getting progressively worse lately, frequent scalding/burning pain etc., I wanted to discuss the options again. When I made the appointment I specifically asked if any of the practice doctors had experience with damaged spines and neuropathic pain. Luckily, a new addition was a former military doctor who seemed to understand what I was saying and he was the first GP in almost 10 years who actually performed a physical examination to see for himself the extent of my movement and what hurt and what did not. Wow!! Needless to say, I shall be seeing him again.

There seems to be a severe shortage of doctors who actually have experience of dealing with our condition. I know I'm rambling again, but I suppose my point is that if you are registered with a multi-doctor practice, it doesn't hurt to ask which of them is likely to give the best treatment. I've also found it helpful to learn as much about the condition as possible. Armed with this knowledge you can sometimes steer the GPs in the right direction. Thanks to Apparelyzed for making this possible!!

Edited by greybeard, 17 July 2011 - 03:20 PM.

[Tatiana]

Hi, thanks again for the support and replies.

Im in a sticky point with my docs at the moment. I can only see two out of five of them for legal reasons.
One of the two i have already seen regarding burning nerve pain and she admitted she didnt know much about how to treat it.Its probabaly SRD (have i got those the correct way round?)she agreed but rathered i spoke to my consultant about it (which i did but to no avail).

I asked my consultant if it was the numbness stopping me walking and he just said no.......so i asked was it the saddle area problems that was stopping me walking..he said no.So im presuming its the lack of muscle power? He did that buzzy test on the inside of my ankles and i could feel it (considering that i already told him im not totally numb on the sides he did it on) and he said that becuase of that i should be able to walk.

I can (with support) put one leg in front of the other..its carefully co ordinated and im dragging along lifting my feet very unaturally.
If i lie on my side in bed, i lie with one leg on top of the other because they are dead weights and i manage to keep control of them better this way.
the leg which is on top i have to lift/pull off, if i let go it would plop back down..

CES is very odd indeed.....there is a common theme with it but then no common pattern it seems.

Yes, its our family who suffer,my mum bless her is besides herself with worry...and my sister is a google queen, it was my sister who told me i had CES,thats how i found out because she read my notes at the end of my hosptital bed.

My OT wont come and see me now until i am 6 months post op.

Hey ho...i wont give up..il be on the phone to people again tomorrow.

I googled my consultant and seems he was a surgeon who then went on to gain his qualificatione in neurosurgery and immediately took up a consultant position in the neurosuregeon department.

[pinkcloud]

hi greybeard, thanks for sharing i never did know why ya was sci, your a knowledgable bloke, thanks for sharing.

Brock, this is top advice..thing is nhs is a lot about money, politics....

Pals is the greatest ever Tatiana, and also phone up brain and spine foundation neroscience nurses too.

Physios are fantastic - well the fantastic ones are, things is in me experience - doctors dont listen to physios who are 'below' them.

Ya gp needs to buck his act up really, doing sweet f.a. is what got him into trouble the first time i guess?

hes ignoring you again?...........

seriously go pay for a private consultation - you need a solid letter to stand up against your newly qualified neuro...

and apart from this website..that the sheffield consultants know about and respect from what i believe- mention 'i read it on the internet' is death by them taking you seriously...ask anyone here who worked in medicine

huge hugs xxxx

[Tinbasher]

If this is the same consultant who did your surgey then there are very good reasons to see somone else preferrably a neurologist.



Tom

[Tatiana]

No he didnt do my surgery.

My surgeon said that if nothing comes back within 6-8 weeks then nothing probably will.

My 2.5 hour operation ended up 5 hours..thats all i know..said there was a lot of cleaning up to do.

[brockit79]

Tatiana,

If I were you I would only go to your GP as a way of getting a referral for a spinal consultant on this matter, you have time and time again got confusing and unsatisfactory advice and treatment from them. They have the power to do it and it will be your quickest way of doing it. It will help you if you have a specific Dr's name at a specific hospital/spinal unit. YOU CAN HAVE ANY ONE IN THE UK....(I CAPS'D that btw lol) it helps to know that but if going to the nearest one you are happy with that is good. Why not ask about Sheffield? I know with the spinal centre I am going to the consultants are named on the internet site.

I took the name of the Dr I had been recommended AND the address and produced it happily when my GP asked if I had any idea where I would like to go for a 2nd opinion. My GP is golden, in my opinion, however if you go in KNOWING your right's it is an advantage. You have the right to a. a 2nd opinion and b. that said 2nd opinion at any spinal centre in the UK....PATIENT CHOICE and all of that. You have SCI so you need to be seen by a SCI consultant.

Now, it is in your GPs (any medical professionals' for that matter) interest to get you sorted asap so that you don't deteriorate further. They can not justifably delay you any more.

If you get no where fast then it's time to get a new GP practice and if need be the SIA involved. It seems to me they are fobbing you off when they are not even trained in SCI!

Sending love n hugs,

keep strong,
Broc

[ajl338]

Hi
Just realise that consultants might be highly qualified but they dont live in your body 24/7 therefore you also know a lot about yourself.

Go with what you think is right.
I can drag myself round on a set of crutches and I did that for a while. My doctor was against my chair from the start, I was told it would make me lazy. Which was a good comment considering i was spending all day watching tv because it was too much effort to go out. I got my chair and have never been in ever since. It meant i could go shopping, cinema etc. They dont seem to get the fact that getting about takes up so much energy so you have none left to enjoy yourself, then they say you are depressed.

I dragged myself round on crutches for a long time because the docs said so. The result is a set of messed up shoulders and carple tunnel in both wrists. So i am waiting for surgery on both of them. I so wish i hadnt tried to please someone else rather than do what is right for me.

I can still drag myself round on sticks but i choose not to. I use my chair all day every day and feel much better for it. Do what ever is easiest for you. getting an AFO for your dropped foot is also easy. Ask your GP for a referal to the surgical appliances dept at the hospital. My first AFO was a cast of my leg and then they made a plastic afo to fit my foot. I now have an off the shelf carbon one. The other option is a soft rubber cuff that goes round your ankle with a piece of elastic that goes from your ankle cuff to your shoe laces to provide support. They arent very much money and might help you.


ann

[sherbs]

Tatiana

I dont understand why you didn't see the Consultant who did your surgery, your surgery was not very long ago, any you would usually go back to see the surgeon who performed the operation, I saw my Neuro-surgeon each time i went back to Southampton Neuro, right up until he retired, i then saw a succession of sho's, some were good some not so, Thats when i decided enough was enough, and got a referral to London

Please do as Brockit suggests and get a referral to an SCI, or if they cannot oblige, a Neuro Hospital to see a Neurologist

Take care

xx

[Ginny]

Oh, where to start here? I can completely relate to your story. I had great surgeons for my spinal and ortho injuries. However, when they released me to my 'rehab physician' I got no help whatsoever. In fact, I think I taught him more than he helped me.

The folks that helped me the most were my PTs. I had a very experienced PT who'd seen it all. When I couldn't get answers from my doctor, she figured it out with me.

Just comparing to my own experience, I was in the very position that you are in when I first got out of my wheelchair. I could only stand at the kitchen counter for a half-minute stints last December. When I started walking with my walker (zimmer), I could go 20 feet at a time. It was exhausting. My feet dragged. Nothing felt right.

My physio helped me work out a way to strengthen and got me progressing to different walking aids. I used AFOs at first to help with the dragging feet. My physio gave me exercises using resistance bands. I did them like a religion. Pretty soon, my feet weren't dragging anymore and now I can get by without the AFOs. I started getting stronger, went to crutches, then canes, started adding more distance. Now, I can use a treadmill for 40 minutes at a time and use the bike trainer for that long, as well.

Your doctor is telling you that you can walk but your body isn't ready. It needs lots of work in strengthening and flexilbility. You also need lots of practice with walking. Start small and work up, bit by bit. Don't tackle the big store yet. Your progress may not go as fast as you want it to. But, keep track and you'll see changes.

Nerves recover at 1mm per day. A lot of days are needed to rebuild the connections lost from your SCI. It won't all come at once but you will see improvements over time.

Giving the impression that you should be able to walk perfectly, right now, was incorrect on the part of your doctor and probably made you feel as if you were failing, somehow. This isn't so. You are still early in the healing process. Give it time, work as hard as you can, watch the progress.

I don't think I'll ever walk as I once did. However, it's still getting better and that gap between where I am now and what I consider to be normal is getting smaller. I hope the same happens for you!

[Tatiana]

Thankyou again guys for the advice. Its been very very helpful.
Whats a PT?

I really wish that i would have seen my surgeon at my consultation visit.

I am waiting to see my doctor with regards to a referral to a more suitable consultant/clinic.

Ive also decided that im not going to push myself beyong my natural limit just to oblige my consultant. I already have a painful lump on my right hand from using the crutches so im going to take it a little easier.

As brock advised, when i get assessed by my physio tomorrow for my muscle power im going to ask that the assessment is sent on to my doctor and consultant.

As mentioned earlier using a wheelchair allows the freedom of getting out more so today i have spent almost the whole day out thanks to my wheelchair...and had a very good but tiring day.

Ginny, i will work as hard as i can and hope it pays off as it has with you to make improvements.
I am in the very early days of my post injury period so i want to achieve as much as is possible.
Only one problem is that i dont think i can yet use any supports on my feet/legs as they are swollen from DVT's?

I realise that i have to much more pro-active in changing things for the better for myself.

Thankyou everybody for taking the time to read and respond

[Trinity]

Tatiana, on 19 July 2011 - 07:34 PM, said:

Thankyou again guys for the advice. Its been very very helpful.
Whats a PT?

Physical Therapist, same as a physiotherapist but American!

[Tatiana]

Thanks Trin

[pinkcloud]

Tatiana, hi

Theres something going on with the Patients Choice stuff, not sure as I dont work in the field no more.

When I refused to go back and be operated on at any of the two hospitals locally....I had to go thorough PALS, to get operated on out of the county i live in, lets say for pretends sake i live in london and i wanted to be treated in liverpool.

Now I got permission for this only because for I had sufferd neglect and had complained before about these two local hospitals beforehand.

If you wish to see your operating surgeon....you can..you call his secretary and tell her you are happy to wait util an appointments comes up..then at your cinic appointment you say you want him and no other.

I feel it will be worth you getting ya mri reports and your post-operative notes from our hospital and you keep them with you. Not just for now.....for future reference as back up to new doctors you see.

Sheffield..in my opinion is THE BEST by me experience and all whom i have spoken with agree..you will not go wrong with these guys at all. But it was going to be near wales as thats me closest..but i couldnt travel there so lucky for me..sheffield it is

I still say again..in me experience a physios letter dont stand for much weight (sadly)......as Brock said..SIA is excellent.

good on ya and ya wheels, why walk when ya in agony....walk around in home so ya dvt dont b getting worse. And maybe check with ya dvt nurse to see how to contol it with more limited mobility.

Hugs xxx

[Mrs Wisteria]

Hi Tatiana

So sorry you have had such conflicting info from your dr especially as you would have been hoping to get a clearer picture for yourself - having your questions ready etc. You must be so frustrated - especially thinking that it could be several months before you get befopre him again.

I dont have ces but I did have surgery less than a year ago and have had varying experience of the drs/consultants. Its only NOW that I feel I 'belong' to my neuro consultant and feel more confident about him and his advice - and that is because my surgery was done by a locum consultant who just basically wanted info for a research paper. I am very happy with what he achieved in that I have recovered more than was expected, but he was always only ever a locum. Now that the new consultant has been appointed,and I have seen him a couple of times, I am really happy. Whilst I was in hospital I was advised that I was being referred to Southport and would have to stay there for probably a couple of months. I agreed with the neurosurgeon and the multi-disciplinary team that I would do whatever was required but from home - sounds daft (especially since being home I have found out more about southport and what it could have done to help), but we got it sorted - my neuro rehab team assessed me 2/3 weeks after I came out of hospital and worked with me at home and later in the clinic gym for about 5 months. My physio also referred me to the orthotist for assessment of my feet/balance and had lifts made for my feet - they will also do other appliances that you may require. Again, I found these to be quick referrals and quick resolutions. I dont think the physios carry much weight politically as has been suggested, but I do think that they can get closer to the problems and help you find the right route through. Maybe you need to push for quicker appointments / referrals etc.

I love my GP but she is dumbfounded by my condition but makes no apologies about that and is quite open about her learning process, she is quite happy to be 'lead' by me and my condition. You have said that there are legal issues with your GP's - is there any chance that you can move to a totally different practice? ALthough your current gps will no doubt be treating you extremely professionally, there will always be that underlying problem.

Sorry, Ive rambled on again - I just cant bear to see you so bothered by it - i do think that you have had excellent advice from everyone telling you to listen to your body - it really does knwo what it can and can't do. My physio always said 'if it hurts - we dont do it' she was all for getting me to push a little bit further each time - baby 'steps'but we didnt push so hard that there was pain. Just rememberd tho it bl****y well hurt when she was showing me how to get up from the floor and my hypersensitive knee was SCREAMING and I was SCREAMING and she said 'it doesnt matter cos you still have to get up off the floor!!!!!

Please get anotehr opinion - even if you have to pay for a consultation (they dont like it when you do that though) but at least hopefully you will have better guidance for getting properly better so you dont have to worry about getting in and out of your horse boxes any more!
Good Luck and take care
V
aka Mrs wisteria