failed op, what next ?

HI Roseann,

I contacted you a few weeks ago before having a second opinion regarding a failed operation.I would really appreciate it if you have time if you could e.mail me 

Marilyn,

 

Hi. Roseann,  thank you for your reply.   I had my op. at the Walton Centre. Fazakerly, the surgeon was Prof. Eldridge.   I went to see him for my follow up - 5 months after the op. - as soon as I walked into the room he said " it has failed. "   Initially I said that I would have a second op.but when I received the copy of his letter to my GP. & actually saw all the possible side effects I wrote to him & said that on consideration I had decided not to go ahead with it.  He wrote & asked me to come & see him, which I did.  We discussed the issue & he agreed with my decision.  I was discharged as I didn't see any point in staying on his books if he wasn't able to do any more for me.  He did say that if I changed my mind I could ask my GP to refer me again.

Jean.

Hi again Jean.  I know that the Prof has a good reputation and that he has done some re-do's too (and with success).  Did he not give you another MRI scan?  That's the bit that confuses me a bit because I don't know how he can say that it wasn't successful without looking at a new MRI.  There are many people who have taken up to a year to be spasm free after surgery, but they have normally seen improvements in the first 4 months.  Just wonder whether it might be worth going to see Nik Patel in Bristol for a new MRI and second opinion?  If you decided to go privately it would cost you around £750 (MRI and consultation) if you could run to it?

Hi Marilyn, I will try to e-mail you later tonight if that's OK.  I shall be interested to hear how things are going for you.

Hi. Roseann,    I'm having a senior moment as to whether or not I had another scan ( I don't think I did ) It's just that 4 weeks after my op. I ended up in another hosp.  with something else & had so many tests/scans etc. that I didn't know whether I was coming or going.

The Prof. said "it's failed " as soon as I walked in the door, as I was spasming as I walked in, at first he said maybe the teflon wasn't long enough, but then said he didn't know why it had failed. He did agree to do the op again, but I got the sense that he was reluctant.

My husband - who tells people I have got a bit of a twitchy eye, if they ask.  never wanted me to have the op in the first place & was relieved when I changed my mind about having it done again, would be really unhappy about putting myself through it again, as I don't cope well with the anaesthetic & was vomiting for 8 days afterwards - I did have an anti sickness jab before the op -

I don't know what to do, I just feel so down.

Thanks for listening.

Jean

Hi again Jean, I really feel for you.  It must be so hard to deliberate between a re-do with all the potential problems and a 'do nothing' with the sure and certain knowledge of continued spasms.  Neither choice is exactly inviting, is it.  

My feeling, for what it's worth, is that it's definitely worth getting another opinion and certainly another MRI scan.  I know that Marilyn (below) is in much the same boat.  Many people speak very highly of Nik Patel in Bristol (including me) and I think you would get a very honest opinion from him as to the chances of a successful and safe second surgery.  I felt that he was 'risk averse' and that he would advocate doing nothing if he didn't feel he could help you.

I hope you'll find the strength to continue fighting the good fight against these damned spasms.  Take good care of yourself.  Wishing you the best.  Roseann

Hi. Roseanne,  thank you for your helpful input. I am going to have to think long and hard about my next move.         Jean

Hi Roseann. Can I ask, when you saw Nik Patel first time did he tell you what the success rate was for MVD surgery. I am under a London neurosurgeon and he has said that in 3-5 years perhaps 50% of people have relief. I am about to undergo another MRI and then book in for surgery but had realised that these are not good odds. Someone else said that Nik Patel gave 80%.  Did your surgery work ? I need to know this info as I am thinking of getting a referral to Bristol and would need to do it ASAP.

Thankyou very very much

Denise

Hi 'Harleygirl', I remember you from this forum from a few years back before I had my surgery!  The success rate you have been quoted is definitely NOT GOOD ENOUGH.  Was this Mr Thorne by any chance?  Others have mentioned that he quotes this success rate.  Nik Patel definitely quotes 80% complete cure with a further 10% seeing some improvement, and I truly believe these stats because I've now seen at least 30 people who have had surgery with him and I would say that these stats are about right in those 30.  About 30% of people are spasm free immediately with others taking either weeks or up to 12 months to be spasm free.  In my case I was spasm free in 6 weeks, whilst friends have taken the full twelve months to be completely free of spasms (but with gradual improvement and less intense spasms post surgery).  The important thing seems to be whether you see improvement in the first four months - that is an indicator for eventual cure.  

If you do decide to go to Bristol then you might choose to do the same as I did.  See Nik Patel privately (take a copy of your MRI with you) and pay £250 for the consultation.  If he feels you are a candidate for surgery he will transfer you to his NHS list for surgery.  I think there's about a 10 month waiting list for surgery at the moment - he is very popular because he does a lot of this surgery with success.

Just as a pure statistic, there is a doctor in the US (Dr Sekula in Pittsburgh) who boasts a 90% success rate.  He does seem to be the guru of this surgery, but this demonstrates that 50% is a pretty poor show.

Let us know how you go please and wishing you all the best whatever you decide to do.  Roseann

Hi Roseann.

Thankyou very much for your reply. The surgeon I am under is Mr Andrew McEvoy at the National Hospital for Neurology and Neurosurgery. Did you contact Nik Patel privately or did you get a GP referral ? I am waiting to have another MRI as the last one was done 6 years ago !! long story.

By the information you have kindly given me I am going to go to Bristol for sure.

The last  Dysport injections have been terrible , have them every 12 weeks for past 15 years. Sometimes get a bit of double vision but this time has been horrendous. complete double vision so cannot drive and if I go out I am taking a stick so I can gauge where things are to my right. If I am honest the injections have only worked maybe 3 times in all those years. Does knock the edge off but does not stop them.

Does hearing get monitored during the op do you know.

Thankyou very much for all your kind help and will let you know what happens.

Denise

 

Hi again Denise

Sorry to hear you're having such a rough time of it; it really is time to try to get this sorted.  I did get a private referral via my GP but it may just be worth ringing Nik (Nikunj) Patel's private secretary at the Spire Hospital in Bristol to check whether you need one.  If you do a search of Nik Patel if gives his private and NHS contact addresses on his personal website.  I can confirm that they do monitor hearing during the surgery and, touch wood, I haven't heard of any of Nik's patients losing their hearing.  It is always spelled out as a risk but this Lateral Spread Monitoring that they do seems very effective.  They give you loads of tests before the surgery as part of your pre-op assessment and this also includes the lateral spread monitoring.

Please get in touch if there's anything I can help you with.  I'm happy to give my e-mail and phone number via a private message.

Take care and good luck!  Roseann 

Hi Roseann.

Am going to see my GP on Tuesday to discuss with him and hopefully get the referral I need and today I am going to e-mail Nik Patel at his NHS and private website. I asked Mr McEvoy before about the hearing monitoring and he said he didn't do it so I was a bit concerned about that.

Wanted this op before I was 60 but due to health and mother in law problems could not have it done. So now at almost 63 it is a now or never thing. Also needed to see new Granddaughter in New Zealand before op. Now that is done I have run out of excuses.

Thankyou so much for your help and support and yes, e-mail would be great . Not sure how that works though.

Kindest regards

Denise

 

Hi again Denise - sounds like you've done all that you needed to do and now it's time to put yourself first.  Your age won't be very different to mine when I had the op (I was 62) and I really surprised myself by coming through it really well.  I think you're right to avoid a surgeon who doesn't monitor hearing before and during surgery.

I will send you a message on here with my e-mail address.  It will be at the top of the page under Messages I think.  If you do e-mail me then please put a clear subject heading in it so that it doesn't get lost in the junk folder!

Look forward to hearing how you get on - good luck girl!  Roseann (real name Angela)

Hi. Marilyn. Thank you for your reply. Botox didn't work for me. I'm always the awkward one. If you do decide to have a second op. I wish you success & a speedy recovery.       Jean