Hello Noelle,

It hurts to just know and understand in a small way the pain you are in. My thoughts and prayers are with you Noelle.

Noelle, you certainly have tried many ways to overcome the pain you are in. Obviously some thing of things are not right that need to be made right or at least greatly improved.

Do I understand correctly that you live in the UK? Have you had an MRI recently, and if so did the images give an indication as to what is wrong? Lastly, have you received "second" opinions from several spinal surgeons? Sorry for the questions, I'm just trying to better understand things.

Take care.

RichT

Hi there,

Thanks so much for your reply, sorry it was such a rant, I'll try and answer the best I can, bec of all the meds don't remember much of the last 10 yrs.

Firstly yes I'm actually living in London. Over the years I've seen many surgeons under diff disciplines, had many CT and MRIs, and have heard many varying opinions....one doc actually told me 'I should put some lipstick on, a pretty dress and pull myself together and try to get out of bed'.... great!!!! Finally I was lucky and sent to a wonderful orthepedic surgeon who stated 'of course there's something wrong wth you, let's find out what it is'. My last MRI, just bef 1st op (where to my best understanding) they discovered the disc had split and the fluid inside had leaked out causeing damage to the nerve, a lot of scar tissue was also djscovered. After my 2nd op was unsuccessful he was a bit stumped. Things got worse so I was then referred on to various pain clinics where they played about with my meds, tried diff types of nerve blocks but not much long term help there so finally sent me to the iput programme. There I was taught techniques such as pacing, relaxation, positive thinking, setting goals and how to approach 'set-backs and relapses'. I've found ways of fitting these into my daily life, not very well if I'm really truthful. But nothing seems to help during my really bad relapses, esp this one.

My GP has presently put me on MST for a week to see if that calms the pain down and then will refer me to a neurosurgeon but unfortunately that takes time over here and I don't have the funds to go to a private clinc. So begins again the waiting game.

Thanks for your thoughts and prayers and I'm truly grateful for any help and understanding.

Regards. Noelle

Hello Noelle,

Thanks much for answering my questions. Much appreciate, as it helps me better understand your "doc history", etc.

I was SOOOooo very glad to read that you have an appointment to see a neurosurgeon. That is the best person to see in my opinion. May I ask when you will be able to see the neurosurgeon? Hope they can work you in the near future. Whoops, just noticed I misread what you had written. May I suggest that you call your GP on Monday and have him make an appointment for you as soon as possible. I certainly don't think he should wait/waste a week to see how the MST works for you.

Please do keep me/us updated.

May the good Lord give you some peace from your pain.

RichT

Hi there,
Sorry hvn't been back... WOW.... MST sure knocked me out for few days...Pain's eased up bit except when I move so improvement on how it was anyway. Trying to hurry things along with GP, 'NHS' long slooow process over here so keeping fingers crossed. If anyone esle can make any recommendations for some great/understanding neurosurgeons over here in London, sure would appreciate any help.

Thanks again for yr kind thoughts RichT.

If you don't mind me asking and if I'm not being too nosey how are you doing?

Regards, N.

Hello Noelle,

Glad your pain has eased up a bit with the MST, but knocking you out for a few days isn't a very good "side effect". I remember when I was taking hydrocodone, I literally slept the days away. After a couple of weeks I decided I wan't going to live in that "state", and slowly began cutting down on the medication.

Is MST a narcotic medication?

Good for you in trying to hurry your doctor along a bit regarding an appointment with a neurosurgeon.

You asked if someone living in the London area could make a recommendation to you for a neurosurgeon. Noelle, may I suggest that you start a 2nd thread and perhaps title it "Help - London Neurosurgeon Needed", or words to that effect. It would hopefully catch the eye of those from the London area who know of an expert neurosurgeon.

How am I doing? On Thursday morning I received my 2nd epidural injection. By the afternoon the pain in my lower back was disappearing. Friday, Saturday and Sunday I felt great. Then about 5 am on Monday the ole back was hurting. Did some gardening, etc. on Monday and the back was feeling much better. Then last night back to the lower back pain. The pain is mostly gone now after moving around a bit. Must be my arthritis acting up with this lousy cool damp rainy weather we are having. No complaints though my ole back is much better than it was the first part of this year thanks to my pain management doctor.

Hope your day goes well.

RichT

Hi there,

MS Contin or Morphine Sulphate is a controlled-release tablet containing morphine, typically taken every 12 hours--only twice a day. (that's the official blurb anyway), I know it's not so good to be on these types of meds but it sure feels good to get some sleep finally and at least i've stopped being the scary,shouting,weeping, madwoman to my family for a few hrs!!!

Grt idea about 'thread'....nxt project after nxt nap.

Glad to hear things are going well for you....mostly.,,,and grt to hear you've got yourself a helpful and understanding p.m doc. Hope some better weather's on its way soon.

Stay in touch. Take care,

Regards. N

In response for your request for other peoples input and suggestions, I’d like to butt my nose in here for a moment and say hi to both Noelle and RichT, I’d also like to say that while I can’t add much to what has already been said, so much of your history resembles my own that I do have some food for thought and a couple of recommendations that might help.

You mentioned that you have obtained some relief with exercise, pilates in particular? The biggest tool in my box of pain management toys and tools (and you know the ones that I’m talking about), is exercise, pilates in particular. Exercise is secondary to my meds, which I can’t move or function without, is the greatest and best of all my tools.

Several years ago, I had the good fortune of working with a UK trained (Ilive in the USA) physical therapist who had crossed trained as a fitness therapist. Our goal and treatment objective was to make my muscles stronger than my bones and although the process exacerbated my symptoms and there were periods when if I wasn’t in therapy I was in bed, there came a point where we started to gain ground and the stronger that I got the less severe the pain became. Although it hasn’t eliminated my pain it has reduced it and like you, I’ll take anything in the form of improvement that I can get.

Since most people living with back pain become physically degenerated as they decrease their activities, most people, especially those with back pain, can’t tolerate the pilates for beginners programs and will require the assistance of a physical therapist, fitness trainer or a certified personal trainer (one who has obtained the necessary training to prescribe for people with spinal issues) to modify and ease them into a pilates program. DO before you begin any exercise program; obtain a full medical evaluation and approval of any proposed exercise program with your doctor.

Since you have obtained some relief during your MST trial will or has your doctor started you on a regimen of Oxycontin or MS Morphine? If so, you might want to talk with your doctor about any bothersome side affects. Most people, including myself, are bothered by “fuzzy” headedness, mood swings and the feeling of being fatigued and tired all the time while taking MS morphine. The same people, myself included, don’t usually have any noticeable or bothersome side affects from Oxycontin. Both are opiate based, time released formulas, nearly identical to one and other in terms of pharmacological uses, they simply have different side affects.

Sorry for the lengthiness of this, but just one more thought for you to consider. Once you do get to an ortho or neurosurgeon, depending upon their findings, you might consider asking him/her about your candidacy for a neurostimulation implant or pain pump options.

Good luck and best wishes,
Tyton

Hello Noelle,

Thanks for the info on your pain medication, MST.

I truly hope that the medication is only a stop gap measure until you can see a neurosurgeon. MST is one powerful narcotic medication and can become very addictive very quickly. I am gald it helps you get some sleep, however -----. Good that you also know its not good to be on such medications.

I'll look forward to your new thread, and HOPE people in the London area respond.

RichT

Sorry it's been an age before I've replied to you.I've been trying to get another thread going re a london based neurosurgeon so that's taken over a bit.

Thank's for all the advise. I started pilates thru a friend's recommendation, she bought a machine from qvc (now don't shudder) and I took the booklet along to my trusted oesteo, who studied it from cover to cover, thought it might help and showed me what excercises not to go near. I bought a machine (next model up infact) and another friend who's a personal trainer worked with me thru the dvd until I got used to the exercises, after that I was off ....I love it....and the weight loss was a great added bonus.

Unfortunately MST pain relief wearing off, so another chat with GP in order, will mention the 'oxycontin' (tho we might not hve it/or it's under diff name in uk). I was recommended for internal nerve stimulator many years ago but was on wafarin at the time and the op was too dangerous apparently. I've heard good/bad things about these so I'm bit wary. What's a pain pump?

Anyway hope this finds you having a 'good' day. Take care and thanks again,

Regards N.