Opened the can of worms

julie47

Hi everyone,
Today I went for my rhummy appointment and I have re-opened the can of worms. :shock:

As alot of you know Last year I was supposed to have 2 operations. One was the C4/C5 fusion and the other was the odontoid peg (c1/c2)

Well after a lot of messing me around, I eventually had the c4/c5 discs fused in december. This was done in a private hospital as I had been on the nhs waiting list for about 24 :shock: weeks (if I remember correctly)
This op was supposed to have been done within 3 weeks :? :? from seeing the surgeon.

I went backk for my post op appointment 6 weeks after and discussed my 2nd operation. The surgeon who did the c4/c5 said that HE would wait and not have the C1/C2 done yet and that he would monitor me.

The trouble with his offer of monitoring me , was, that the hospital was too far to travel on a regular basis. SO, he said that he would Refer me back to my original surgeon.

I have been waiting since Feb for this appointment.

SOOOO today when I went to my rhummy app I asked if they could find out any information for me. (it was the rhummys that referred me to neuro surgeon in first place)

After spending some time on the phone to different departments, she has found out that NO i am not on an appointment list
and Yes the surgeon did send a letter to refer me back to my original one.
Apparently the letter has got either lost or just filed in the cabinet :roll:

I have been assured that the said referral has now been faxed to my surgeons secretary and I have to ring her on Tuesday to make sure I am on his appointment list.

When I get my appointment I have a good few pros and cons questions to ask, because the surgeon who did the discs said that he wouldn't do it yet if I was his patient.

I know I will have to be brave to question my surgeon, and it doesn't make my decision easy when 2 surgeons have different opinions :?

I will let you know when an appointment arrives.

Thank you for reading my long winded explanation.
(got a real head ache now with looking down at key board :roll: )

Have a good week end

Love Juliepf xxx

fowls48

dear julie p

you poor love i really feel for you . I am Often overlooked but now, knickers to it i ring up the hospital and make sure things are done .Good luck to you sorry i not been of much help , i am sure good advise and sympathies will be coming your way from the forum .Take care

lots of hugs(((())))
karen fowls

pinkbritishstars

Hi Julie

I really feel for you.

Sending you big hugs

Pink xxx

dreamdaisy

Oh my poor love, this is indeed a toughy. I cannot advise as I am not in your situation but I can send hugs: brace yourself! (((((((((()))))))))) I think you need a lovely clear list of the pros and cons, then base your decision on that. As I understand it you cannot look down now without pain, if you have the odontoid peg op you won't be able to look down at all: is that right? Invest in that voice recognition software anyway, it can only help. DD

PS If I have misunderstood anything I humbly apologise, I'm not at my best and even if I was I could still get things wrong. :oops:

stickywicket

It's definitely a tough decision, Julie. In your place I think I'd wait until the appointment comes through and only think about my options then. Well, that's what I say: what I would actually do is probably nothing like that. So, if you've recovered from DD's by now, here are a few more. Best grab a neck support first. ((((()))))

dreamdaisy

Morning, my lovely pink flamingo, I am thinking of you. DD

mig

Sometomes you have to open the can,hope it goes well on tuesday,will be keeping fingers crossed.(((()))) Mig

stickywicket

Morning my wonky-necked friend. Just a few more of these (((())))

tjt6768

hello mi lovely..
What a horrid decision to have to make.. I'm sorry but I can't offer any advise on this, just wanted you to know I'm here for ya hun.

Xxxx

elnafinn

Aw dear Julie

Just seen this, sorry, but life is happily manic in the elnafinn's household now that hubby has retired, so not looking in so much.

Wait until the appointment comes though but chase it if there is delay. Shame both surgeons can not be in the room with youwhen all this will be discussed. Did you trust one surgeon more than the other? It is awful having to make decisions, I know that but at least I only had one surgeon's point of view and with all the cards laid on the table, the choice was then mine. I hope hubby will be able to attend with you. I can understand why you did no chasing up when you heard nothing .....

Could this surgeon monitor you like the other one was kindly going to do but did not :shock: :? if you are not keen for another op? Or have I lost the plot already in this can of worms.

I truly sympathise my lovely, you and me both, mine for slightly differing spinal reasons.

Promise I shall be in touch and I am always thinking of you.

Love
Elna x

julie47

Good afternoon every one and thank you all for your words of advise and support.

Sorry I haven't been on earlier to reply to you all but I have been galavanting around B&* p*worl* a couple of other shops and pretty soon I am going for my hair cut :shock: :shock: Wouldn't be able to do all this if it wasn't Richards saturday off

Karen and pink Thank you both for your hugs , they did help

Mig. Thank you for crossing your fingers for tuesday in hoping that the secretary can help, can I ask you a favour ....Will you give me a shove to the phone and dial the number as this is going to take courage

DD and sticky, It is a big questionn to ask isn't it? do I ,don't I. I will ask when I eventually see this man the pros and cons and just hope his manner is a little more understanding this time. I have had a look on another forum for c1/c2 disc ops and although they are rare the few people on there who had had this op were positive. So that helped

Tony I know you are always there for me You are a good friend

Elna, I haven't been on here much either :oops: due to typing difficulties, looking at keyboard.
This surgeon is a little more arrogant than the one who did my 1st part so I am not sure he will want to monitor it and more likely want to just do it :? He is more a fix it now before it breaks type of guy.
I have been thinking on his wave length, that yes I may recover more quickly at 49 than I would if it lasted till I was 59 and adapt better to not being able to move head disability better.
Also.... I know the spine c4/c5 are secure now but has it helped the peg be a little more secure. :? As you can see, I am jotting questions down.

Also on the forum I went on, that I have menttioned in dd and stickys paragraph one person after having the op stopped having these terrible headaches. (they are like a knnife going up the back of your skull) Sooo thats another question


Right my lovelies....I have to log off now, (hair do then going to see R's mum in hospital) I apologise for not reading anyone elses threads today but it takes so much time to type.

Take care and thanks again
Love a very pink faced flamingo (with this heat)

xxxxxxxxx

dreamdaisy

Bless your heart, apologies are not needed, it's just lovely to hear from you. I hope that ma-in-law is behaving. Oh, btw, the hair looks great! DD

barbara12

Hi Julie
I really do feel for you, all these decisions, and the lost letter, not sure if you know but my consultant has just found a letter from last July, saying I should have another epidural, I do think they should give us our notes let us take them home and read them.... :roll: I do hope you get the courage to talk to your consultant, I know its not easy when they are arrogant..but we are all behind you.
Wishing you well with everything...and keep away from the keyboard for a while....or else...
Sending you loads of hugs (((((()))) xxx

Heather65

oh dear that doesnt sound good hopefully you will get it sorted soon thinking of you

valval

hi i know nothing of this op so can give no advice except do not let them rush you make sure it is what you want you can not go back but get the feeling that they would not offer to do it if you did not need it good luck val

tillytop

Hello Julie

Nothing I can say really other than that I am thinking of you and hope that between you and the surgeon you can come to a decision you are happy with.

Love and ((()))s

Tillyxxx

Heather65

Hi julie i fogot to say im having my first MRI on my neck on tuesday so am following your thread with great interest not sure what will happen but there has been talk of a operation which as you know can be a scary thought so i will have to wait and see ,and i would like to be able to talk to someone who has gone through it

julie47

hi Heather

good luck with this scan tomorrow, and I have sent you a PM.

love Julie PF x

Heather65

Thanks julie feeling a bit nervous but glad its here will let you know ,i work nights so dont usually post till later in the day my appointment is at 1.20pm so i should be able to get some sleep first