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Jul 01, 2016 9:00 PM

Saw the Neuro-Ortho spine surgeon yesterday. My hubby went with me because we knew the doc wanted to discuss surgery on C3-C4. I was completely overwhelmed by the knowledge of information he gave us. He answered every question either of us had with great details. Not sure I'm liking all the knowledge. πŸ™‰He said flat out I cannot wait any longer to have the surgery, but I at least managed to put it off until August.

We have a trip to my dad's farm with our granddaughter the last weekend of July. He's got Alzheimer's, and he's forgetting even who he's talking to by phone now; we have to identify ourselves. My siblings, hubby and I are going down tomorrow for a belated 86 bday lunch. I don't think he'll know any of our names in another year, so we want to give out granddaughter one more good visit with her GGF.

Anyway, back to the surgery... I've had C4-5 fused in '92, & C5-6 in '95. This will fuse C3 to C4. But they'll remove the titanium plate & screws already there then replace it with a longer plate. It will be a front entry, hopefully close to the previous scar. However there are great risks with this, which has made me and my hubby very nervous. (1) the C3-4 level, if damaged could make me a quadriplegic. (2) the location is so close to the nerve that controls swallowing & talking ability, that if the tiniest bit off could paralyze my larynx & pharynx; no speaking, no swallowing. (3) If I fail to do the surgery and I'm in any accident I could be paralyzed. 😬 No nail biting here! Not much of a choice here, except to try and repair it (relieve the pressure from the disc pinching off the spinal cord).

The upside info we were given:. The damage at the C2 is minimal facet stenosis, so at a later date he will do the nerve burning (if I get brave enough to do it... Can't be sedated and I'm "chicken BIG" of needles in my spine). The C7-T1 facet stenosis can also be treated with burning the nerve. But if...IF the C3 surgery is successful, it could very well bring relief to the other levels, including the lumbosacral & sciatic pain. He explained this is because all lower nerves are branches off the nerves above them, which all start in the neck. Oh wouldn't that be a wonderful blessing?!?! πŸ™

The tentative date is either Aug 8 at the hospital, or if my insurance approves it Aug 10 at his surgical suite behind office. Either way I'm nervous! So please be keeping in your prayers, and my hubby too. Wishing everyone a good weekend with hugs, love, & prayers! πŸ™‚πŸ’•πŸ™πŸŒΌ

Jul 01, 2016 9:05 PM

Wow... flappys that's a lot of information. And I'm sorry you have to make this decision. I know your nervous and actually I could not imagine how worried yiu and your husband are. However, I'm glad you have him there for you. As u know we are all here for you especially me.

Jul 02, 2016 1:07 AM

I'm C3/4-6/7 Incomplete(T7/8Complete), as you may well know, and I think you both know what you're dealing with here, unfortunately there is no way to sugar coat any of the details. The biggest issue for me is C3 controls your diaphragm.... So I have a reduction in the capacity in which I can breathe, it's very hard for me to produce a cough, which again is something I need to be able to do. So this means chances of pneumonia are higher. I've had pneumonia once this year already and it likes to dig it's heals in!! The dreaded Automatic Dysreflexia can be hard to manage. Involuntary Muscle Spasms and Spasticity that is permanent is difficult too, but. What else can I do? It's done.... I try and get on with making as many memories as I can because, life is for living and sharing with loved ones. It's going to be a difficult time for you as you weigh all things up and make your mind up.....then change it, Obviously we can't decide for you, but I can tell from my perspective that life, although harder, has its doors wide open for us to re-discover what our bodies are capable of if we suddenly have barriers placed in the way. Of course I'll be thinking and praying for you both through this period of uncertainty. But also know that I am here if you want to talk about anything!! Best wishes 😊

Jul 02, 2016 5:43 AM

Hello flappy... wow that struck a chord... hi flutterby.. hello JAH... i hope u dont mind me adding to the thread...⚘⚘⚘

I too have had cervical fusion at C4/5/6/7... discs herniated so i have a titanium cage... my mechano neck!

i now have arthritis and stenosis around these fusions crushing my oesophagus from behind so i can barely swallow and there is talk of a pureed diet... so i would rather drink meal replacement shakes cos the choking got so bad.

This also impacts my C3 so i have about 60% of lung capacity due to diaphram... and all this also leads to bouts of pneumonia and i cant cough for toffee! ;) i have spasms in my trachea that make me unable to breathe at all at times... to the point that i think this is it this time.. i am gonna die! And then i hit the deck!

I had cervical denervation a few weeks ago, for the 2nd time... it has got better with time... but only reduced some of my symptoms in my neck but all of my arm symptoms are gone. ..the latter being really good :) ...it wasnt pretty... but be brave and u will get thru it, if i can do it, i am sure u can too flappy. U r such an inspiration to me sweetheart... u can find enormous strength within that big heart of yours, that i have no doubt ❀ All of this i somehow deal with by adapting to it ...as and when it changes.

I also had my husbands mum come to live with us when she started to show signs of dementia. She was blind as well... and she was my best friend. She was here with me when her grandchildren were babes and they brought her so much joy in the final years that she knew who we were. (I used to work in care on an elderly mentally ill unit) it is ALL about making Memories... i hope u can make good times for your dad... i so understand what ur going thru xx

Jul 02, 2016 6:13 AM

Lulabel, I've just added to thread with you and Saz on πŸ˜ŠπŸ˜‚

Jul 02, 2016 9:35 PM

Thank you Newfibrogirl, Jahmac, Lulabel, & Invisiblepain! It is scary for sure. We had my dad's late birthday dinner today and trying to explain it to my dad was hard. I think it's rather take the chance to replace the bad disc than do nothing and wait for it to worsen. I've already been in 5-6 auto accidents in my lifetime, not to mention all the falls I've taken. There are risks with any surgery, but I'm willing to go for it. I just have to stay positive, trust God & trust my doctor.

Jahmac & Lulabel, the doc did mention the diaphragm being controlled by C3. I already have asthma and I've suffered from cooking bronchospasms for the past 6-7 years or longer. I can get too hot, or choke on saliva or four and then I'm choking & gasping for breath. I have tessalon pearls/benzonatate that helps gain control of them. Like Lulabel said, I'm wondering if "this is it" at times. I'm not sure what the autonomic dysreflexia is. I've had chest & upper back spasms since a 1997 auto accident so I have an open muscle relaxer rx to help. My hubby and I have wondered if my bladder & bowel control issues, which started at different times over the past 3-5 years. My bowel tract has become sluggish yet i lose control. Over the past year my bladder is the same, but before that it was overactive and I'd have accidents when I sneezed, coughed, or laughed. The doc said this disc nerves could be at the root of it all. And then my hand tremors started last year, so we're wondering if this is also from this disc. The C7-T1 address, & C2 has lots of OA growths & facet or foraminal stenosis. He said they will shave off any visible OA when they do the surgery.

I love your outlook Jahmac. And yours too Lulabel. I believe thinking positively and doing the best with what we have is very important to coping. I have one family member who wants to wallow in self pity, and another too proud to accept reality, help, use assistive devices, and adjust. I can't live like that. Don't get me wrong, sometimes I need a good cry too. But then I do whatever has to be done. I just hope the surgery will help relieve some of the pain I get just from turning my head or looking up & down. Thank you all for being here for me!! Hugs love & prayers for each of you! πŸ™‚πŸ’•πŸ™πŸŒΌ

Jul 03, 2016 12:50 AM

Oh my gosh, you guys!
I think, first of all, I don't want to lose you flappyslady81. You are a 'backbone' of this community. I don't know you, but I think you're smart and wise and well spoken. I'm so glad you are getting this done.
Sounds like you trust your doc. Envision strongly, a positive outcome and hold onto hope. I know you can do this. You inspire countless people in this community alone.
Thanks everyone for the reminders. Each of you understands what I do, that memories are what survives us.

Jul 03, 2016 1:45 AM

Autonomic Dysreflexia Is when the blood pressure spikes to severe highs which can be from something so simple as my catheter being blocked,my caters have a checklist to go through when it happens to find out what the cause could be. They elevate me on a ramp then us my tilt function on my powerchair and this helps bring the BP down. It a potentially life threatening, but it's pretty easily managed, most of the time. Like you say Flappys, positivity is the best thing, but we also have to remember that we are human, and it's OK to have those shitty days.😊

Jul 03, 2016 5:49 AM

Oh my... hi flappy... much good karma coming ur way sweetie.

Hmmmm...i have lost all bowel sensation and mostly all bladder sensation too! My drs like to go back n forth over whether its my MS or spinal causing it! Im sure its spinal... i take oxybutynin for overactive bladder that likes to empty in the middle of sainsburys! I cant feel it but at least that doesnt happen anymore! I time when i need to go... and bowels once s day... but it took many accidents to get to this place.

I dont have any feeling from under my boobs... thru to my undercarridge! No hunger... no thirst... i can go days without remembering to eat anything but a handfull of pills 4 times a day... i take movicol to push things along with fibre... but im always a little constipated... just so i dont leak!... only my drs know this.. i have never told anyone... not even hubby knows how bad it has gotten!

Im now blowing another disc at sacro1-2.. under my last fusion... and now my special button has swollen twice its size and i have no UTI or bacterial infections down there.

All of this is a constant tug of war... being constipated can really cause confusion... i cant feel it ckming till its too late! We never go out to dinner... i never cook (cant stand long enough)... i have lost over 200lbs (14stones!) So i look great... but i never enjoy a meal... so i avoid it! Hubby has a very good job at SKY so he eats there cos they have wonderfull food! I can only swallow a soft diet anyway... i choked at the Harvester once... they called a bloody ambulance! I avoid them like the plague! So i cannot eat in public... people get scared! I really thought my chips were down that day!

Its all just a learning curve of adjusting to the symptoms... and pushing on... i cry at least once a day tho... not so much since meeting all u fabulous peeps... i have accepted its ok to have those moments, they relieve my stress by letting it flow!

Hope u all realise just how special u really are, by just being here and sharing ur experiences... because i have learned so much already x

Jul 03, 2016 5:53 AM

No pain in my digestive tract.but unbelievable pain in my back, hips and down one leg to the knee!

Jul 03, 2016 5:54 AM

Lulabel- type in the search section on here for 'Embarrassing can't hold it' you'll find a thread where we have discussed this issue

Jul 03, 2016 5:56 AM

ThanQ JAH... i will look, sorry for going off on one there hehe x

Jul 03, 2016 6:31 AM

Flappys - I'm thinking of you. Lots of hugs and hopes that you get through this xx

Jul 03, 2016 12:30 PM

Not at all Lulabel, I thought you would find it really interesting to read the particular comments in that thread!!! 😊

Jul 03, 2016 12:45 PM

Prayers and hugs to you!!! You will do great!!!!!!!!! πŸ˜ƒ

Jul 03, 2016 1:23 PM

Good luck Flappys!πŸ’–

Jul 03, 2016 2:16 PM

Just woke and thought of you. Said a prayer and wishing you all good things. Stay strong @flappyslady81, you got this.

Jul 03, 2016 5:43 PM

Oh my, I'm so blessed to have you all! Thank you so much for all the support! We all learn from each other, so thank you everyone for sharing in any posts. Thanks for explaining that AD Jahmac, and for mentioning the old post. I think I'll go back and read it. I'm really having trouble getting regulated again since the stomach surgery in May. And Lulabel, thanks for the additional sharing. I'm not familiar with movicol though. And I totally understand the low back & leg pain. Between it and the C7-T1 pain In not sure what is worse. It seems as one calms down the other flares up. With all the support, prayers & positive thoughts this should be a breeze... Except my knees are knocking! Lol πŸ˜‰. I love you all!! πŸ™‚πŸ’•πŸ™πŸŒΌ

Jul 04, 2016 4:40 PM

Flappys, I am sorry I have been so busy getting and picking up donations that I totally missed reading this!

WOW!! I am so sorry that you are even having to make this tough decision! I can't imagine how you must feel right now! Enjoy your time with your family and your visit with your Dad and granddaughter and You will have alot of extra prayer's from my family and me! Take care and I will keep up with with thread (if I can remember the name) to see how you are doing.

Love,Hugs, and extra special prayer's and Sunshine πŸ˜˜πŸ’•πŸ™πŸŒž

Jul 04, 2016 5:29 PM

Flappsy, I don't know how the hell I missed this and I am so terribly sorry for that. I guess I've been breezing through and didn't see this. Shame on me!!πŸ˜•
That being said, I am sorry that you have to make such a decision. As you know I have many cervical problems and they begin at C1. My spinal cord stimulator which was replaced 5 times and is broken is so scarred in and there is so much damage from the surgeries, they can't get it out with it paralyzing me. All of my cervical discs are herniated and I'm all bone on bone. I've had laminotomies, laminectomies and facet injections and nerve burning. All to no avail. I got no relief from the nerve burning but he warned be from the start that it's hard to pinpoint the exact nerves to offer relief. At any rate, they want to fuse from C2-C7 and I got all of the information you got and it scared the living shit out of me. The migraines from the neck issue are getting closer and closer together and lasting longer.
I have to say, I am glad that they are able to get you in quickly. Since you can't put it off and run the risk of being paralyzed without the surgery, it leaves little choice. From my heart, my dear friend (my twin separated at birth), I pray that this surgery gives you the healing and stability you need back in your neck and that it does, indeed, help the other areas of your spine by taking pressure off the nerves. I'm sure it won't be an easy recovery but God will see you through it and you have your pain family all standing by your side praying for your well being.
Please enjoy the time with your Dad. I know it's hard watching someone you love decline like that as you know, I just went through that. Enjoy the farm, your granddaughter and being with family. Be safe.
I'm sending you lots of love, positive vibes, well wishes, gentle {{{Hugs}}} and prayers that everything goes according to plan. Love you my friend.πŸ’•πŸ™πŸ»πŸŒ»πŸ˜

Jul 04, 2016 5:32 PM

I know how you are feeling. I have to go in for C3-4 surgery for the second time. Already had C3-7 operated (in separate operations) on. I'm hoping for some pain relief. πŸ˜πŸ€•

Jul 04, 2016 5:46 PM

Best of luck gnine0326, I hope that it works for you and that you do indeed get some pain relief. I think we could ALL use some right about now. {{{Hugs}}}πŸ’•πŸ™πŸ»πŸŒ»

Jul 04, 2016 11:34 PM

Gook luck flappys, I hope everything goes smoothly for you. Keeping you in my thoughts....

Jul 05, 2016 9:15 AM

Moparmom & AlwayZ, it's ok you're just seeing this. We all have so much going on. I haven't been on all weekend, trying to get things done & spend time with our granddaughters. Thank you too RavenRose. I'm not going to deny I'm more worried about this one more than I've ever been with all my other surgeries combined. I think it's because unlike all the other docs who were too scared to touch me stated the same risks. But I don't think there nerve burning will do any good. I'm keeping headaches more and I'm sure it's from the discs. I'm also concerned the bowel & bladder issues may be too. And knowing how worried my hubby & children are isn't helping. My daughter wouldn't let me tell our grandkids the risks, but I did tell them it's going to be a long recuperation. My youngest suggested I use her "princess" tray, to place on the kitchen table and raise my plate of food where I can see and eat better after surgery. What a smart child!! I've just got to dig deep for my calm & strength this time, so maybe if I seem brave they won't all be so worried.

Gnine0326, I will keep you in my prayers that your surgery goes well. AlwayZ, I knew you'd had problems with the implants. But I didn't know you'd had laminectomies or laminotomies. What are those?

To share a good memory... we played several games over 2 days and the oldest granddaughter (C) won every time. Then yesterday we played "Life.". The youngest granddaughter (K) was coming in last so she took revenge on C, sending her back 10 spaces. C landed on revenge so she took I'd $100,000. I reached " millionaireacres" first. My hubby tried for Tycoon and ended up in the "Poor House". When K reached the end she decided she'd try too because she had very little money. She won by spinning her number!!! Omg, the look on both granddaughter's faces was priceless! πŸ˜‚ The oldest doesn't like not winning.

I pray everyone has a better week this week than last! Hugs love & prayers to all! πŸ™‚πŸ’•πŸ™πŸŒΌ

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