How to a Second Opinion (UK)

Brain and nerves
1

after some advice as to how to proceed. 

Ive had an appointment with a NS privately who has told me "I can have the decompression op if I want it". He didn't give me any indication as to whether he thinks I should have it or not or if it is medically recommended.

Now I totally get it has to be my decision but he gave me little confidence as to his chiari knowledge. I asked how many ops he had done and he wouldn't give me a straight answer just telling me that they do 100's of ops for similar things like tumours etc where they have to open the dura. 

Finally he he told me they do possibly 10-15 of these procedures a year at this hospital but still didn't tell me how many he does personally. 

He he may be very capable but the one thing I get from all the experiences from people is you have to confident with your NS and I am just not and don't feel I am in a position to make the decision on surgery ask just haven't been given enough information about the surgery, the process, the risks, etc. and same goes for not having it, none of the risks were explained I was just told it may be further damage. I wasn't told what type damage could happen or what the chances are or anything. 

I have a NHS appt with a NL in February as I didint cancel this when I went private. I want to see another NS that is experienced in Chiari am I best to keep this appt or go back to my GP and ask for referral direct to NS ?

INFO : I've had brain MRI and Cine MRI for CSF, it shows Chiari ( don't know measurement as I haven't been told ) and significant flow reduction to the posterior fossa. I only know this as it was in the referral letter form the NL. The surgeon did not tell me this. I ave also been sent for a full spine MRI after some persistence about some other symptoms. 

My my main symptoms are valsalva headaches. I have others but this is the main concern. 

 

2

Hi  htch,

First of all I would ask my self whether you are confident or not with your NS?, if you are not then go back to your gp, explain it honestly to your gp your concern?, where do you live, I live in Dorset, if you like you can ring me on my mobile than I can guide what to say come back to me...every one have the right to have 2nd even 3rd opinion about their health issue, unlike cancer or tumour in the brain CM is a rare issue, yes cancer and tumour are common condition that NS face it daily, but CM is only 1 in 20.000 - very rare and every one is different..keep your appointment do not cancel it, but you really would like to go back to your gp to get second opinion, you have to be assertive , THIS IS YOUR LIFE/YOUR HEALTH!!!!, ad CM is not a disease as cancer or hypertension is mechanical malformations..talk to Ann  Conroy Trust they will be able to discuss about your worry as well, there are some neurology nurses there, the problem in the Uk the primary care health care sometime are not aware about CM..hence you mnust be proactive yourself by reading the website about this condition as well as joining this type of group so that you have an inside informationabout it, I learned a lot from this website..I have got to know my neurosurgeon (2nd opinion) from this webite as well, and I live 3 hours from here!!, but do not be worry about what others think, you have to think about your self..is there any one can accompany you to see your gp? or your ns..whether or not you would like to have your operation it is up to you...each person is different..but all my health care professionals advice me: operation is not the answer, just like any other operation (whether is heart by pass, have knee replacement, or ours) all have side effect..they have a duty to tell us that..its not always successful..hence you need to know : how many people they have done?, what is the success rate?..NS might done hundreds but is the success rate is no good what is the point?, NS could only done 10 but if the success rate is 99% that would be excellent?, as each person is different , they could have complication etc..etc..in the UK as i said..the guide line is: 1st..they try not to operate if they can...have to be maintain by the drug, I will choose that too if that can be managed. Surgery is always the last result. My NS and his team basically already advice me that there is nothing they can do a part of giving the drugs (that do not work...) I used to be really bad , until I found a website and learned from it and took several supplements, cost me lots, but I am able to walk and mobile (as I never used to be before taking these supplements) and dropped 6 of the drugs, I am only taking 2 now.., my advice would be: if you can stand without operation (I mean you can live a normal life without jeopardize your quality of Life -- why would you have operation?) I would like to have operation because I would like to have my life back (I have to resign from my executive role due this condition): I am unable to provide support to family like I used to be, I miss soscial life with my friends,  hence for me and for a like wise people as me it is important to have the Op, plus to stop for getting it deteriorate. Well if you need any help for some one to contact your gp or anything or you wanna to talk let me know, I ll give you my private email we can chat and I give you my mob no.

3

Hi,

This sounds exactly like the nightmare I had last year! I won't bore you with it, but suffice to say I was left entirely on my own, medically speaking, to research and arrange treatment!

Anyway, I'm 4 weeks post surgery and apart from being on my third lot of antibiotics for infection in my wound I'm fine.

You don't say from which part of the UK you're from. I phoned my closest hospital with a neurology unit and asked who was their ' chiari person'! Then I did a bit of research - thank God for the internet!- paid for a private consultation, well worth it, and when he advised that I DID need the surgery he put me on his NHS list. I did have to wait 8 months for surgery, all the while getting more and more ill. That was because I specifically wanted him to perform my surgery. It was tough going, but it was the right thing for me.

If he is not specifically telling you that you need surgery I would consider whether or not to proceed. It does carry a lot of risk.

Keep your appointment with the NHS neurologist but remember they are not chiari experts. The one I saw was vile and dismissive.

I hope this is of some use! I'm by no means an expert on chiari but a year of seeking out treatment has taught me a lot!!

4

Hi Clarey1 which part of UK are you?, which hospital are you going to have an OP, please post us how are you doing OK after the OP, good luck and god bless, I am sure every thing is going to be oK,  are you on medication at present, what are you on?

5

Hi I am in Midlands area, currently seeing a NS privately as I am lucky enough to have private health care. 

My local hospital has a large neuro unit but none of the NS list Chiari as a specialist area of interest. But I will ring Monday and ask I never thought of doing that so thanks ! All of my research to date has been on the Internet and trying to get feedback from other UK patients. 

My preference would most definately be to not have surgery as my symptoms are currently manageable and do not drastically affect my daily life. However I am worried about how things could change and how quickly, I know my CSF is significantly restricted but in reality I don't know what this means or what possible damage this could do so how do I decide on surgery or not ?

I was only with the NS for all of 10 mins and he really didn't give me any indication on what his medical opinion was on whether surgery was needed or not. Just said I can have surgery but I need to decide if I want it.

I see him again next week and I am compiling a list of questions that I am going to print off and give to him as asking him questions didn't seem to get me anywhere hopefully if they are in I writing and I can just hand them over he can't avoid answering them ! 

 

6

Hi,

I'm in Glasgow. My surgery was 4 weeks ago at the Queen Elizabeth Hospital neurological unit.

7

Hi,

Is the NS that you saw / are seeing again at a private hospital? My feeling would be that it may be better to do some research and see someone that specialises in chiari, even if you have to go somewhere else, rather than again see someone who doesn't appear to have been particularly helpful! (This is speaking as someone who was told by an idiot NL that flat shoes cured all and 'why should he bother a poor NS with people like me'!!).

The size of the chiari is not particularly relevant, it's more about your symptoms. You should be able to find out the size of it from the source of the referral letter or by calling wherever you had your MRI. (Mine was 8mm)

You're going to hear a lot of negative stuff online for people about chiari, so brace yourself! I think some people enjoy the drama. Keep grounded, and focus on doing the best thing for you x

8

I see you have many responses 👍

I am 8 months post op & doing really well. Just had a check up last week & all is great!

I was diagnosed 7 years ago with CM, as time went by, symptoms got worse! My NL blamed stress, eventually symptoms got so bad, I turned to the Internet & did a LOT of research.....my GP referred me, at my request, to The Walton Centre, I saw a NS that specialises in CM.

I had 2 consultations & full brain & spine MRI's. I arrived armed with a lots of questions, as time is short, given my symptoms, horrendous valsalva headaches & much more, I decided that my symptoms were affecting my life enough to warrant major surgery. My NS said it was, of course, up to me, but if left untreated the symptoms would probably continue to worsen & I might not be as fit to under go the surgery in years down the line, as CM runs the risk of syrinomyelia/syrinx. Once damage occurs in the spinal cord, it is irreversible.

The surgery aims to halt the progression, hopefully stopping the typical valsalva headaches. Mine have gone, I never would have thought it. I also know that some patients are not as fortunate as me in their recovery.

Now, for the surgery....a good NS with experience in CM will tell you, there is no cure, just hope of stopping it getting worse. It is major brain & spinal surgery, the recovery is bloody awful I won't lie. I was told for 3 months you will feel like absolute sh*t, so true!! I will not bore you with the ins & outs of the op, but, if you do want to know the reality of the surgery & recovery, I am happy to discuss it with you. I have some tips at the very least to aid your recovery.

The treatment I have received at The Walton Centre has been incredible, I couldn't have had better if I had gone private ( and I am quite a fussy pants!) 

Three other women on my ward were also having the same op...Posterior Fossa Decompression, I also had laminectomy of C1 & part of C2. We all had suffered differently & all recovered differently....

I did so much research on it, my NS was surprised with the questions I asked, so, if I can help in any way, please just ask..... I know how scary this can all be, very overwhelming to absorb all the info, but ultimately, the decision is yours. Good luck, be positive 👍

 

9

Hi Hayleybell,

Sorry to jump in on someone else's original post!

I hope you don't mind me asking.......I'm 4 weeks post op and though my recovery was amazing at first - no nausea, nurses amazed at how well I was doing etc - I'm on my third lot of antibiotics because of wound infection. I've been in my bed for 3 days in an attempt to let it all heal! I suspect that because I felt better than expected immediately after surgery I came home and did too much!! The in laws did expect Christmas dinner 2 weeks after surgery, after all! I was expecting to be back to normal by now. Any words of wisdom for me?

By the way, Htch, apologies for hijacking your post!! X

10

Hey, no worries, nice to be able to help a fellow 'zipperhead' lol.....

firstly, the fact that you can even function whatsoever in the first few weeks is amazing! 

It took me 5 days just to walk from my bed to the loo in the ward!.....

I could not even roll over in bed in week 2 without vomitting, so how you even ate Christmas dinner, let alone cooked it is a bloody miracle 😳 I trust the in-laws bought you an ace pressie.....

As far as wound infection goes, I can only suggest the common sense norm, no shampooing, no touching, clean pillowcase every day, get nurse to check regularly & air it?......has the hospital that treated you seen your wound since you were discharged?

You have no fluid leaking from it I trust?

Temperature?

Swelling?

My advice to all having this surgery ( which I was kindly given & did not always follow) is, DO NOT OVER DO it.....no hoovering, lifting, straining, swimming, not even emptying the dish washer, not yet!

Trust me, one day you feel better, do too much, then spend another crappy few days in bedat the very least, It isn't worth it. on good days, gently be up and about, but rest. Don't forget The anaesthetic is still in your system. I still cannot over do things now, 8 months on, I get very tired and feel a bit funny.

I strongly advise doing the neck exercises they gave you on discharge, it is so important to get things gently moving, even though it hutrts, gently, gently does it..... Drink lots and lots of fluid, no alcohol, sorry, but you won't want it anyway! This will really help with the new pressure in your brain. Oh, and if on pain meds, take laxatives, trust me, straining is a no no for a few months! 

Hope this his is of some help.....🤕😷😴 👍

11

Yes the NS I seen privately, I didn't choose him personally the NL that sent me for MRI and found the Chiari referred me to him. 

I already have the follow up with him scheduled as he has asked for MRI of spine (after I asked). My plan is to go to appt but also ask for second opinion and this time I will choose the NS myself ! 

Ive done a lot online reading already and I am trying to stick to the facts and what I can validate on reputable medical sites as well. 

I'm not naive as to what this condition could mean but I prefer to think positive whilst also ensuring I am not "sticking my head in the sand" if yesterday makes sense !

12

Thanks for the input it would appear there are some hospitals very experienced at treating this condition and others that are not. As my Local hospital has a neuro centre I'm not sure my GP will refer me to another unit but it won't stop me trying ! I just want to be able to feel confident that my doctor knows what he's talking about ! 

13

No problem ! We need to get help wherever we can ! 

14

No problem, glad to be of some help. 

I had a new GP that kindly agreed to refer me to The Walton Centre, Liverpool. I refused to go to any others as I had to be confident I was in the best hands. Which, I was, still am. I am a 3 hour drive to Liverpool, Mr Buxton very kindly, was pleased to treat me. He knows his stuff and will give it to you straight. 

Stick to websites from the U.K., too dramatic and negative elsewhere.

Before my op, an ex-nurse said to me, "gosh, you are so lucky that you are able to have such an amazing operation to help you" I needed that, positivity is a must! 

let us know how you get on!

15

Hi Hayleybell,

Yup, I definitely over did it!!

I didn't get any exercises from the ward, but I got some online and have been doing them.

No fluid leak, yes to temp and swelling. I've been seen both at the ward (briefly readmitted 12 days post op) and at our local out of hours surgery. Now vomiting and bad headache so will call again in the morning.

16

Get phoning round on Monday to find your closest 'chiari guy'. Or lady! I found that most surgeon's secretaries are helpful, and have slightly more time to talk than a general Neuro department. Believe me, I called them all!!

17

Thanks... Did you just call and ask to speak to secretary of each consultant ? Do they share secretaries or op have different ones ?

our local hospital has about 10 NS's ! 

18

This sounds more time consuming than it was.......

First of all, call the Neuro departments and ask if any of their NSsspecialise in chiari. That information is freely given.

What I did then was research each NS online. The good ones are proud of their work and its really possible to easily find out what their specialty is, recommendations from patients etc. I know, I sound like a mad stalker but it's all out their in the public domain!! I also called a few GP surgeries and asked to which NS they would refer their chiari patients.

I've just realised that I sound mental!! I've always been know as thorough when I do something!!

Anyway, that allowed me personally to narrow it down to a choice of 2 NS. Then I found where he does private consultations and paid for one appointment. It also turns outbreaks gut feeling was right and he is highly respected.

Perseverance!! Keep me posted. C x

19

Sorry to hear that......I hope you can get some rest & call the ward.

Do let me know how you get on once you feel up to it.

Take care

20

Hi Hayleybell, just like clarey1 I LIKE TO JUMP HERE as wwell, I am seeing my NS on the 14th of jan for 2nd opinion as I WOULD LIKE him to do my op,...pleaese can you write it down for me any other suggestion what to ask beside do/don't after the op, side effect etc, etc, what to expect, woud appreciate very - very much.... THANKS