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Posted 8/28/2012 9:22 AM (GMT 0)
Hi all

Well I had my first post op appointment following my sacroiliac joint fusion in June.

The news was good and bad. The good news is that everything looks great on the side operated on in June. I have very little pain in that side, i have been able to lie on that side for over a month now. However it is looking like the op done in January has failed so I am looking at revision surgery. There is a possibity that there is another spinal problem too so we decided I should have another MRI scan.

I am claustrophobic so I was hoping it could be done under sedation. My consultant thought that would be OK however that was not to be. The MRI dept has only been open around a month so they are very new to it, sedation may be a possibility in the future but not now. I had the scan yesterday, brave soul that I was.lol My DH was in the room with me as well as the MRI manager, both holding hands. How ridiculous is that, a grown woman reduced to a trembling wreck!! After a poor start, where I was shaking so much they had to stop and restart, I finally settled down and it was done.

So now I await the results. The question is - will it be spinal surgery as well as revised fusion or just the revised fusion? My second SIJ fusion was done by a new method, the DIANA method, which was much less painful immediately post op than than first op. The doc only started doing this method three months after i had my first op. The first op was done by the old method which has a higher failure rate, and is now known to be more painful. Of course I didn't know all this. I have a great relationship with my surgeon so I don't blame him. I do research these things and I did know there was a possibility of failure, but you never think it will happen to you.


This will be my third back op this year and my fourth in two years so you can see why this has floored me. I really never saw it coming. the next question will be where I can have it done. We have private medical insurance. To those who don't know me I am in the UK. However my consultant doesn't think the private insurance will pay for the revision so I might have to have it done under the NHS. I have no issue with that other than the waiting time. I could wait months.

I am so weak and sore. I am trying to reduce my pain meds, mainly because I could sleep 24/7. I know some of you would love to be able to sleep. My problem is chronic tiredness and fuzzy head. It's a hard one. I was doing OK, down to 25mcg fentanyl patch, as well as 40mg twice a day OxyContin, but the pain is now reaching levels I am struggling with so reducing meds any more will have to wait until I am in less pain. I can see me having to increase it a little for the time being. I am fighting depression too, it's just a bad time. I have to remind myself I have little to moan about compared to some.

Sorry for the long post, I guess I just needed to get it out of my system. My daughter wants to blame someone but I just don't see the point in that. No surgery comes with guarantees, I was just unlucky. I don't think it would serve any point in getting angry. Thank you for allowing me to get it all out.

Best wishes to all

Jane
Posted 8/28/2012 9:46 AM (GMT 0)
Jane

I had a good laugh about your MRI. I have been getting mri's since I was 9 years old and I love them! Always found it kinda fun. So anyways thanks for the laugh!!

Now to be more serious, I am sorry you need more surgery but you are right, there is no reason to get angry and blame anyone. You can't live life that way. Just my outlook. Everything will be okay and you are right once again, there are people out there who have it way worse. Things like that get me through battle'n my brain tumors. I am lucky it is not cancer. You will be in my prayers.

Maryann
Posted 8/28/2012 10:08 AM (GMT 0)
Thanks Maryann

No wonder you laughed at my carry on, what an idiot. How you endure them regularly, I don't know.

Thank you for caring, it means a lot. You are right, there are worse than us. While I dread the results of my scan, I know it's not life threatening. I can't imagine what David will be going through. I love his attitude, it inspires me. He is quite a man. You have been through a lot too and you have a good positive attitude, you really need that don't you

(((hugs)))
Jane
Posted 8/28/2012 10:22 AM (GMT 0)
Yeah David is amazing. I always think about him before I come on here and complain too much. Of course he wouldn't want us to do that, but that's just the way it is! However, venting is always healthy. We just have to remember things are not always as bad as they may seem. And we have two choices in life- either do it with a positive attitude or sit around and feel sorry for ourself. The former is my choice :)

I have a MRI on Friday. I will be thinking about you in case I need a good laugh before they wheel me in that big ol' hole of a tube, lol.
When they do my brain scans they put this thing over my head that has a mirror on it and reflects outwards so I can see the room. But when they do my spine i don't have that. I normally just sleep thru it. Before I lost my hearing they use to play music for me.

Take care and no matter what happens you WILL get through it.
Posted 8/28/2012 1:43 PM (GMT 0)
 

      Morning Jane!

          ...It's quite alright to rant here when needed....and we certainlly understand. HealingWell has been wonderful for many who suffer from CP, especially when the general public and or family members just cannot grasp what it is all about. I have always been greatful to be able to come here and seek support or answers. It is so improtant to reach out for help especially when you are a bit down. Four back surgeries is enough for anyone. I never want to have another back surgery like the last one.

    MRI...can be a bit hard to get through, and I'm sorry they could not sedate you. A warm washcloth over the eyes may help if you have another one in the future, but by then, they may be able to sedate you.

 

     Take care, and I hope everything works out for you,

 SE wink

    

Posted 8/28/2012 1:43 PM (GMT 0)
Jane I understand the claustrophobia, I hope I never need another MRI. I guess you are stuck waiting to see how this is going to be redone and of course when. It's a shame that money comes into the picture at all, if it's a nessisarily surgery it should be just done.
Can you tell I am a spoiled Canadian? Yes we might have extremely long waiting lists but we usually do not loose our homes because of hospital/medical bills.
Did you already have an idea that the January surgery failed or were you shocked. I know you will have much more to endure so try to sit back and btw I agree no blame because anger will not help.
Posted 8/28/2012 2:10 PM (GMT 0)
Hi Jane,

I hope your feeling a little better. Your statement about being claustrophobic reminded me of something my boss asked me at my interview 9 years ago. He asked me if i was claustrophobic because i would have my own office and during certain hours, the office door was to remain closed. I told him that i am actually the opposite, i don't like wide open spaces, i feel lost. The smaller the space for me, feels more cozy. Hope you don't mind me sharing that. 8-)

Take care. D
Posted 8/28/2012 5:20 PM (GMT 0)
Thank you all for your kind replies. How anyone can regard an MRI scanner as 'cosy' is beyond me lol. I can think of many words but cosy is not one. No D I don't mind you sharing that, it just made me laugh at how opposite we are....

Rose, I had wondered if something wasn't right as the pain was getting worse instead of better. So no, I wasn't shocked, but I was shocked about the surgery. I had thought it migh be a case of 'let's give it more time', not a definite 'this needs revision surgery'. Having had such good results from the op I had in June, I am hopeful that with the new method, I can have good results again. I just didn't anticipate another op so soon. I'm just hoping that the scan doesn't show up too much as I am not sure I could cope with such a large op just now, in my weakened state. Having said that I am having spinal pain and spasms so it would be good to know why. I don't relish the thought of another three to six months of doing so little. My poor husband has been amazing, thank God I have him. He realizes I am going to be so limited in what I can do so he has employed a cleaner. That makes me feel a bit better and gives him more him time, as he is working ten hour days. He has a hreat job and amazing employers. He has been able to work from home when things have been bad.

I am a bit spoiled too, in the UK. I know that the NHS will pay for this op if our private insurance won't. The NHS takes care of everything, no money needed. We have to pay for dental work but there's capped limits. We also have to pay for optical exams but we are so lucky, I would hate to be under th US system, it just seems scary and sometimes cruel to me. It must be such a worry for many just wondering if they have enough to pay.

How are you Rose - are you feeling any benefits from your op? How is the little one doing? I have been thinking of you.

Jane

Post Edited (Fusiongirl) : 8/28/2012 11:25:05 AM (GMT-6)

Posted 8/28/2012 5:32 PM (GMT 0)
Hi Jane,

Sorry to hear about this new update:(...

I'm a bit confused on why your Dr. couldn't have just prescribed an anti anxiety medication for you to take right before the MRI. My Dr. did this as for some reason I have been perfectly fine all my life for MRIs but the last time I all of a sudden got claustrophobic...So they prescribed some Ativan that I took about 30 minutes before the test and I did fine...

So I am sorry that they couldn't do this for you but hopefully if you ever have to have this test again you can ask for this type of med to take.

Being in the UK....can you request 2nd or 3rd opinions about this next surgery to make sure it's the best choice? Or are you bound to this particular Dr....

I certainly hope that if it has to be done...then the new type of procedure can be done as well. You certainly have gone through so much and continue to have such an amazing attitude which I admire!!!

Sending you some gentle hugs (( ))
Posted 8/29/2012 2:37 AM (GMT 0)
hi jane, i just wanted to pop in and tell you i'm sorry for your bad news you recently received. I hope the mri doesn't reveal further trouble for you. Try to take it one day at a time, stay in the NOW and be positive. You can do this and you will get thru it. You are stronger than you know.

Keep posting with us. We do care and we are here for you anytime you need to vent or share.

Suzane
Posted 8/29/2012 10:43 AM (GMT 0)
Hi Jane...

Just a quick note to let you know that you are in my thoughts, too. Along w/ everyone else... I'm sorry, though, for the news you received... and just the things you are struggling with... the pain, the tiredness and the depression that accompanies all of that. :( I've been in those shoes and it's just not a good place to be.

As others have said... keep posting and venting any time, Jane. And, as another member mentioned - I really admire your attitude and the strength you've shown, dealing w/ all the things on your plate...

Re: the MRI - I'm with you - 1000%, lol. The last couple of MRI's I've had - they have had to yank me out. Ugggh. I won't have another one w/out something to calm or sedate me.

Anyway - you have many friends here that care about you... yeah ---Tina
Posted 8/29/2012 11:47 AM (GMT 0)
Suzanne, Snowbunny and Tina

Thank you, it means a lot to me that you have taken the time to reply, and to know that you care and are behind me. Pity we are from all over the world, wouldn't a get together be lovely!!

Jane
Posted 8/29/2012 3:27 PM (GMT 0)
I agrre Jane. I wish we all lived a little closer to one another. And yes a HW get together would be awesome. I have been fortunate to have met a few of the members irl. A very exciting occasion it was.

Suzane
Posted 8/29/2012 3:30 PM (GMT 0)
I love listening to my books on Audible...and the latest one I have downloaded is Winter Solstice by Rosamunde Pilcher. All of her books are about England and Scotland. They are so descriptive and the audiobooks are read by a British narrator which makes it even more fun!! The books are about friendships, love, and life.

So, it makes me think of all my UK folks..

Sending out some hugs today (( ))
Posted 8/29/2012 3:43 PM (GMT 0)
I have read all her books Snowbunny, I love her style. Really makes you feel you are there. Scotland is a beautiful country. We are on the castle trail, loads of castles in a short distance.

Funnily enough I love reading books based in Nantucket and Hyannis, seems so beautiful. I just picture sea and sun. And of course your wonderful department stores......oh I feel wistful now, can't wait for my next holiday!

Only problem here is the weather. We have had the worst weather ever this summer. It has just rained and rained. No wonder we all want to holiday in the US and Canadian holidays!!

Hope you are having a good day

Lots of ((((hugs)))) which you deserve, you are always so helpful

Jane x
Posted 8/29/2012 3:54 PM (GMT 0)
:) That is great that you have read them all! I did a long time ago but it's so much fun again with the audiobook version. I listen every night on my phone when I walk my doggy, and then every night before bed with all the lights off. It's so great to feel like a kid being read bedtime stories...LOL

That is funny that you are reading ones about New England! It definitely is beautiful up there! It is fun to vacation in other countries...

I'm sure it gets tiring with all the rain....I can imagine that is tough sometimes mentally with not seeing the sun:(

When I traveled to Greece...Athens and then the island of Kephalonia....there were mostly British tourists there and a few of us Americans thrown in. Most of the restaurants specifically served "eggs and chips" for the after "nap" meal when they reopened in the late afternoon because of so many British tourists...hahaha.....

I have also been to London...but would love to go back and get to other areas of the UK like Scotland and Ireland!

Anyway...don't want to go too far off on a tangent on your thread...

Thanks for the kind words...you are certainly so helpful to others on here as well with your sweet and caring attitude:)

Smooches!
Posted 8/30/2012 1:35 AM (GMT 0)

Fusiongirl said...
Sorry for the long post, I guess I just needed to get it out of my system. My daughter wants to blame someone but I just don't see the point in that. No surgery comes with guarantees, I was just unlucky. I don't think it would serve any point in getting angry. Thank you for allowing me to get it all out

Jane

You never need to appologize for venting on here! I think its very therapeutic to get it out. My husband sometimes gets into the mindset of your daughter, wanting to blame a dr when things dont work exactly the way we expected. In my situation, getting angry only serves to make me more frustrated. I would much rather use my energy in figuring out how to deal with the hand that was dealt to me and function to the best of my ability.

Sorry to hear you are expecting another surgery, you are a strong woman and will over come anything put in front of you?

Big hugs,
Shell
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