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Hey new member

DiShDDiSh Posts: 8
edited 06/11/2012 - 7:44 AM in New Member Introductions
Hi,new to this forum having found it whilst googling some answers and thought I may as well register and post. I'm based in the UK and in my early 30s, oh and female.

Quick history of my spine issues:
In April I woke up with excruciating lower back pain and sciatic shooting pains down my legs. I lasted (mainly due to getting an appointment with a doctor) until the Friday on Codiene phosphate and paracetamol (both on prescription for endometriosis pain). On seeing my GP, he decided as at that point I'd had post operative constipation for 12 weeks and suffered incontinence once **blushes**, it was a wise move to send me to the A & E (ER) for evaluation by an orthopedic registrar. I ended up waiting 5 hours to see one, being sent for an x-ray, then waiting a further 5 hours for a decision. They kept me in hospital over night on the assumption I may have cauda-equina syndrome and I would have an MRI on the Saturday when they could fit me in. I saw in total 3 ortho's during that overnight stay and the latter dismissed me as wasting their time and not even being constipated (my GP was fuming). I was told I wouldn't be having an MRI that day as they don't do them and I'd be recalled to have one within a week. I received a phone call on the Weds to attend on the Sat an MRI (yup on a weekend when according to the nurse they didn't do them). So that was my first MRI and was an LS series where I went in feet first and lasted approx 25 mins. Hated and panicked all the way through having seen how close I was to the tubing. Was told details would be with GP and on the following Tues I was recalled for another urgent one with contrast on the Friday following the first (so that puts me at two weeks I think). I made a GP appointment to see if he knew any results and said they hadn't even told him I was having one **rolls eyes** did however get some valium to help during the MRI and my panic attack situation as I'm claustrophobic. So I went for the second and was told whilst sat in the changing/waiting room that it was to look at further areas (still not sure which) and that I had a spinal lesion. Was left for about 5 mins where I did my own head in basically over wtf the lesion meant and then went for the MRI. Went in head first this time with my head put in a cage and wedged in with giant cheese triangles (well thats what they looked like lol). I had my first scan which last approx 3 minutes, I've no idea what this did but it was pre-gadolinium. I was then whisked out and the IV done so I'm now with gadolinium. Had 45 mins in the machine and I think I counted 4 scans (ie banging and then pauses when I was moved). Left and told results be back at consultant that requested initial in a week. Turns out it was to the one that dismissed me, who I've since found out specialises in feet and not spines. Anyways I digress, after a week I ring his secretary and ask for results which she says she needs to check with consultant and will call me back when she knows. Nail biting day where I waited until 3pm then gave up and rang her. Results were all back and evaluated, she wouldn't due to privacy give me details over the phone and told me I'd need to ask GP to request them. She did tell me I was being referred to a neurosurgeon but no more than that (not even where I would be seen as local hospital persay doesn't have them only neurologists.
So I managed to get an appointment with GP following Friday (so thats three weeks) for results as consultant ortho secretary faxed them across. Results were not full, GP annoyed no pictures from MRI, just a scratty note from ortho stating I have a herniated l5/S1 and a 4mm tumour within the cauda equina area. I was put on amitriptyline but after a week I had to go back as I have to work (no sick pay) and it turned me into a bizarre zombie (that was week 4). Was changed on Lyrica and managed two weeks on that with codiene phosphate/paracetamol with no symptoms. I started on low dose of 50mg per day and was told to see gp if this was working/no side effects. So two weeks later on Friday just gone (taking me to 6 weeks) I went back and the lyrical is now upto 75mg a day which my GP was happy to agree to. I've had some relief from this with pain, its not gone but I've got to a point where I'm able to manage it within reason, however the parethisia I've suffered has become more random (not sure if this is due to pregabalin/lyrica changing signals of pain) where I feel I have leggings nettles all day/night stinging me like mad and indeed driving me mad.

So there we go my merry 6 week journey, I see the neuro on Weds and I've no idea what to expect. I also as stated I think suffer endometriosis badly, and have a thyroid issue of non toxic multinodular goitre with hyperthyroidism (although I've put weight on recently due to endometriosis hormone treatment, its possibly minimal compared to your average person).

Hopefully this suffices an explanation to my joining the forum, I look forward to reading about similar symptoms, medications and hopefully if anyone can offer any help that would be greatly appreciated.

I've no idea what my small tumour actually means, if this is an issue, or whether my pain is predominately from the herniation.

thanks in advance

DiSh
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Comments

  • Welcome to Spine-Health. You'll find a lot of good article and videos throughout the site that will help you on your research, and the members of the forum are friendly, knowledgeable and supportive.

    You really have been put through the gamut of things and I think that you timing is not going to surprise many of us. Our spine journeys usually take time, some shorter, some longer. I'm sure you'll hear about that. For me, my onset of cervical symptoms began in May 2008 and had my surgery by October 2008. That's considered a relatively short amount of time, but for me, it was very clear from my MRI, for both my GP and my surgeon, that I needed surgery and nothing else would help. For others, the journey was much longer than mine, having to try conservative method after conservative method, or even just trying to find out the source of their pain.

    A couple of good things going for you is that for being in the UK, things seem to be moving pretty fast. Also, it sounds like you have a knowledgeable and caring team of med professionals that are doing everything they can to find out exactly what's going on. Too many here can't find a diagnosis to their pain and the unknown is far worse than knowing because when you know what's wrong, you can get a treatment plan instead of months or years of test to find the source of pain.

    Take care and let us know what the neuro says Wednesday. Oh, one thing to keep in mind is that it's really important to have confidence in your surgeon and completely trust him or her to treat you.

    Cath

    Here are a couple of links that have question suggestions before meeting with your doctor. I got them out of the FAQ section at the top of the page in the Medical Information area. You'll also find questions to ask before having surgery (if you need them, but I'm hoping not), the difference between a bulging and herniated disc, as well as many more informative links.

    http://www.spine-health.com/forum/alternative-treatments/questions-ask-your-doctors

    http://www.spine-health.com/treatment/back-surgery/preparing-meet-a-spine-surgeon-or-spine-specialist
  • When I read posts like this..I am glad I live in the U.S.
    Yes I have to pay for my healthcare..and have many medical bills..but I can see a specialists quickly and have a choice on who I want to see.
    I am sorry for the run around you are getting.
  • Tonya that's exactly what I was thinking. I get angry when I have to wait two weeks for a PM consult. I can't imagine being suffled around like that. I think Canada is even worse. Who was it who was waiting like 6 months for an MRI and then another 6 months to see the specialist to get the results? Not sure what the point of the test is at that point.

    Well Dish it would seem you are headed for some surgery for the tumor and herniation unless they want to try something else first. The tumor would worry me more. THe nerniation might shrink on it's own or ESI might help. But I would want to know what the tumor was.

    Let us know what happens next. And Cath is right, you are moving incredibly fast for the UK
  • Hi thanks for the replies :)

    I'm guessing the main reason things have gone so quick for me (from the googling I've done) is down to the initially suspected cauda equina situation, and then the fact theres a tumour albeit small in there, but I won't know til Wednesday. I've not actually worked out if this tumour means I've cauda equina syndrome or not, or if its the very start and could pending develop into it. So many questions you get when you think of something you just don't know.

    My GP said its probs a neuroma, and more than likely benign, but on googling (the nearest thing is a schwanoma) I find theres really not much good from either if they grow etc, I've found more about tumours in the conus medullaris and filiam terminale.

    I've even tried to work out how big that tumour is in relation to things to little avail more possibly as a peace of mind kinda thing, but obviously you still get that niggle that if it were completely normal or nothing you'd not be seeing a neurosurgeon.
    I've sussed the rest of the spinal nerves are held within a sheath of 1-2cm in diameter, but nowhere does it specify tha cauda diameter. Likewise on the nerve size to compare 4mm to the nerve its attached to. I guess size and stuff unrelated all of which are things I've got on a list to ask, I also need to be asking its exact location.

    I've written a diary of varying symptoms I've been having such as nettle legs, but I haven't actually got much further as its one of the things I'm doing tonight, putting it in a list format (I've got to write one for my gyne appointment so doing both at once).

    Many thanks again and I shall go and look at those links now.

    Di :)
  • I have just realised, I blame my addled mind that I didn't give any info that preceeds the above.

    So a very quick blurb on what I believe has led to the above situation.

    I didn't have back issues until I was pregnant with my 2nd child. He was born 6 years ago but during his pregnancy I unfortunately developed symphis pubis disfuntion, which became so bad towards the end of pregnancy I was bedridden or wheel chair bound. I was told this would be instantly relieved once I gave birth. This for me was not to be, I frequently had issues of lower back ache and being female they got worse at that "hormoanal" as my DH calls it, time due to ligament loosening around this time. I also since the last pregnancy have hypermobile hips and shoulders which cause me no end of issues and the shoulders cause me neck pain. I've had PT for both hips and shoulders twice (seperate occasions for both) in the last 6 years with no relief and in between those I tried chiropractic assistance which had some relief but cost me a fortune and the issues returned rapidly on ceasing treatment.

    I've always attempted to remain fit and have a home gym of sorts that I've attempted at least gentle excercise on. I did have a treadmill but as it caused too much grief on my hips it was sold to be replaced by an eliptical trainer which would be "easier" on my hips (this was after discussions with gp).

    Pre christmas having had this for several weeks I did my usual 30mins of slow erm whatever its called, and was tired, slightly stiff but fine. The next day however I couldn't walk and ended up at my GP. He decided that my legs were at a different angle to my hips and such excercise obviously wasn't a good idea as it would constantly put extra strain. (I'd draw a picture to mimic the one he did in the office but can't add pics on this forum (at least I don't think I can?). Basically though I hope the below thing helps give the idea?

    o o
    \ /
    | |

    This has led in more recent times to three more occasions in the last year where I've required time off work, with the most recent being in February. The doctor I saw was not my usual and decided I had a sacral illiac issue and was to see him if anything else occured, sent away to rest for three days and then return to work. Obviously it did hence the above initial post ;)

    Through the hypermobile joints I have some fantastic popping and clicking with no assistance (don't think it impresses others but I can't do anything about it) where the joint is actually partially dislocated, this was observed by one of the physio's that decided I was hypermobile as they joints at this point are out of the degree of scope of the normal person.

    So there hopefully is a bit more if anyones interested as obviously sometimes the preceeding episodes can help with the current, though I may just be unfortunate and have them all running at the same time dragging me along in a whirl of pain.

    Di
  • Ask your GP if the tumor is a hemangioma which is benign. I have one on the L2 vertebra and my doctors just keep an eye on it since it is considered stable for now.
  • Ask your GP if the tumor is a hemangioma which is benign. I have one on the L2 vertebra and my doctors just keep an eye on it since it is considered stable for now.
  • Hi thanks for the reply, will as Neuro as I will be seeing him before I see my GP :)Can I ask if you suffer anything from having the hemangioma? I did a quick search and it says blood vessels and I'm assuming if GP says neuroma mine is on nerves, not that its here or there if they just watch them. Also do you have to have further MRI's to observe it? I had to take a sedative for my 2nd MRI I'm already not looking forward to the prospect of a future one for my endometriosis :( thinking if its a watch and see growth, then whilst its a better outcome, its not fun having an MRI every so often (how often?) at least for me its not lol
    Thanks again

    Di
  • hi and welcome to the forum! :H we are here to offer you support and answer what questions we can. i have several good spiney buddies from over there. one from Wales and one from Northern Ireland. good to have you stop by!! i hope you find the help you need. good luck and stop by anytime. Jenny :)
  • Thanks for the welcome x
  • sentiments exactly! I am so sorry to see what you have to go through just to get mediocre care at best. It must be very scary and frustrating. Please do keep us posted with your progress and good luck.
  • Quick update my tumour is a neurofibroma which will be observed for the next year via mri. My herniation at l5 s1 is according to the neuro definitely the cause of my pain. At the mo I am in the great wonderful place again of the UK nhs limbo as the neuro wants me to see an orthopedic doc again and despite being referred to him via an ortho I have to wait whilst he gets my gp to re-refer me due to nhs funding. Leaving me in the interim with 2 answers and lots more questions. I do from the little extra I gleaned at my neuro appointment know that the disc at l5 s1 is degenerated and that the rest of my discs on the t2 weighted scan were black showing degeneration but no idea what it means.

    I see my gp on Monday for blood work results and to discuss neuro appointment and a gyne appointment as insaw both last week (have endometriosis). I am hoping the neuro letter will be with gp as atm I am struggling to function in my normal life with kids and full time job. Not helped by having a severe vertigo flip out at work due to pregabalin dosage increase.

    Thanks Di
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