Little update from me

Hi Jude,

Good to hear that your recovery is progressing so well and that you are now off all medication. You've hit the nail on the head about ongoing pain.....don't do too much!!! I'm sure that the numbness/crampiness in you leg/foot will settle down over time. I was told today that the nerve repairs itself at the rate of 1 millimetre a day! So it is early days yet and I guess that this is a good time to be short!!!

Just try to take it easy. I know that when you have children and work as well that is easier said than done. Make sure you get some \"me time\" each day.

Warm wishes

TFU

Hi Jude

I have been thinking about you and how you are doing!

I am now eight weeks post op and like you improving all the time, walking is great and I'm now back at work part time.

Have had a few more \"twinges\" in my leg this week and a bit of muscular pain in my back but like you I would have the op again without a thought.

Hope you carry on improving

Donna

Thanks TFU and Donna. Found that really interesting about the nerve repairing itself a millimetre a day, makes sense that :D.

The only other thing I get is weakness in my left leg, you know when you stand on that leg and it shakes? I also get a sharp pain in my knee cap, my leg slightly collapses. I'm assuming all this is to do with the nerve being compressed/bruised for so long and I only get it when I do too much like yesterday :roll:

Do you two experience any of this in your leg(s)? Just wondered.

Love and hugs to you both

Jude xxxx

Hi Jude

Can't say I have attempted standing on one leg lol!

I have been getting pain and a odd sensation in my knee that I didn't have before no idea what that is?

I had no pain or numbness after the op but had the odd twinge but today I have had a bit more pain, guess I am doing more.

When I saw my consultant two weeks ago he said some pain was normal in the healing process but I have really panicked today there is no way I want to go back to the way I was. i really hope this is just nerve damage being repaired! He said just take paracetamol!

Hugs to you too

Donna

Hi Jude,

I have had constant problems with my leg post op, but I'm not sure if it is because I am getting better or getting worse!! At present it is the pain in my toes and burning in my leg, from top to bottom that is driving me nuts. Also I still have a lot of numbness. The acupunture hasn't helped and the Musculoskeltal Consultant thinks it is more nerve than muscle related. No surprises there, but at least I gave it a go. I know that I still have more nerve compression from the latest MRI scan but no-one is planning on doing much about it, other than to adopt a \"wait and see\" approach. That is because I complained about the first surgery and the delay in the second corrective operation and asked to change surgeons. But apart from the Muscloskeletal Consultant I have also now been farmed out to a Pain Consultant and a Uro-gynaecological Consultant.

But I am now starting a clinical negligence claim and changing hospitals too, but the latter is complicated and is going to take ages to be seen. In the meantime the old hospital have just sent me an appointment to see the Consultant Uro-gynaecologist for a morning of urodynamic tests to try to get to the bottom of why since the day of the first op I have had no desire to go to the loo. Having decided on a complete break now I'm not sure what to do because a similar appointment at the new hospital is going to take months. My GP couldn't write asking for me to see four Consultants (as is the situation at the old hospital) but instead, I have to see a neurosurgeon at the new hospital and he then has to do the referrals. So now I don't know what to do.

My problem is that because of the complaint and now legal action, they have all closed ranks and I don't trust them in the neurosurgery department at all. At my last meeting there in May, the Neurosurgeon didn't know I had a copy of the latest MRI report and told me amongst other things that there was no compression. I said really, that isn't what the report says. Then he was all \"oh, um, yes, um, sorry I must have missed that, um\". but I don't believe he had missed it at all, he was just lying!!!!

So things rumble on and in the meantime I need to decide whether or not to go for these urodynamic tests at the old hospital. What is the hospital equivalent of restaurant staff spitting in your burger for complaining about the food?????

Personally I have accepted that the ongoing problems from the botched op are permanent now. It has been seven months and I think that if things were going to improve then they would have done so by now. And nobody at the hospital is going to own up to the mistakes willingly, hence the legal action. I would like to know if all the problems are because of the dural tear/CSF leak/pseudmeningocele, or if it was other direct nerve damage inflicted at the same time, or if as the surgeon mentioned she may when repairing the dural tear have stitched in a nerve ending that is causing some of this!!

I do think for patients who have had botched surgery and who have complained about that then if the situation has become untenable, they should be able to change hospitals, quickly and easily without it affecting the care plan. It was in February that the ball got rolling with the latest MRI and referrals, but after I complained, things got very slow and now I am going to a new hospital I am unlikely to get any meaningful care until December at the earliest, because my GP can't directly refer me to the relevant departments at the new hospital, only to the Neurosurgeon and that will be full 10 months after setting off on this plan of referrals and 12 months after the botched op.

Personally, I am inclined to walk away from all of them. The new hospital rang me on Wednesday, I spoke to two people, trying to book me in to see different Neurosurgeons, and only part of the GP referral is scanned on to the computer, the copy of a letter from the Consultant at the first hospital