just need to vent/whine/complain a little...

[cookiebaker]

so... had my neck MRI yesterday, and the results are a bit discouraging, but I am going to wait and see/hear what the ordering doctor has to say about things before I get too crazy about it..

Part of my reason for wanting/needing to whine is due to the fact that I came out of the MRI feeling worse/in more pain than i was in before the MRI
I know many here have had MRIs and can relate to the noise level being problematic.. and the headphones they give you being virtually useless. That part is bad enough...
But for me.. lying on that hard table, on my back, is the hardest part.. with my lumbar issues, and an overly pronounced arch it becomes very painful, very quickly - even with a pillow under the knees (not high enough!!) By the time they were done running the scans, i was in so much pain that i was in tears.. and my left leg had gone numb. I had to sit for a couple of minutes waiting for feeling to come back... managed to walk out to the waiting area, but requested a wheelchair to get back downstairs to the main lobby to leave.. just did not trust the leg enough not to fall (even using my cane!)
I know I have mentioned it before, but the clinic i go to is HUGE.. 4 plus floors of medical offices, radiology, lab, etc.. everything all in one location. They also have a large overflow parking lot with a shuttle bus that will pick you up at your vehicle, take you to the main entrance, and back again.. this is where I tend to park so I dont have to walk quite as far and risk falling (lumbar issues make it difficult to go any real distance)... anyway.. by the time i got back to my car, leg was doing a bit better, and I was able to go pickup a prescription refill and get home ok.

Yesterday's MRI had been scheduled since mid September since I had been having more issues with arm pain and headaches in recent months.. This was aggravated even more after my recent fall a couple of weeks ago... my forearm is healing very nicely, even the torn skin is taking hold and looking good, but the nerve related pain has gotten much worse.. numbness, random sharp stabbing pains, etc. The hand arthritis is also flaring up in a major way, making doing much of anything difficult.. even typing.. have to take frequent breaks. And to top it all off, the weather is changing, getting much cooler, which tends to make things feel even worse.

But, back to the MRI results.. (this clinic has a "patient portal" where patients can schedule appointments, refill prescriptions, see their test results as soon as they are posted - sometimes even before the doctor sees them, etc)
I knew I had some arthritis in my neck, what i did not know was just how bad it was.. C5-6 level shows "severe" left sided facet arthropathy and a large synovial cyst, also on the left, and C6-7 is listed as "very severe" left sided facet arthropathy, with mild spinal canal stenosis and severe bilateral foraminal stenosis (the area where nerves leave the spinal column)
the rest of the neck also shows mild to moderate arthritic changes, and a small central disc protrusion at the C2-3 level.

I am trying very hard to stay calm, and stay positive about things... but the terms "severe" and "very severe" are concerning.. we have already tried some non-surgical PT and, to be honest, it did very little to relieve my symptoms. At this point in time, I am afraid...nervous, anxious.... yeah.. I know I need to just calm down and breathe.. wait and talk to the doctor, find out his thoughts on course of action, but at the same time.. easier said than done.

 

[sunkacola]

Sorry you are going through this. Pretty hard to stay calm, but I know that you are aware of how important it is to do so and know how to do it.

One thing that comes to me is that you may know the words they said (severe, very severe) but you do not at this point know what that actually means. It reminds me of a blood test I had this year. It came back with my kidney values just slightly raised, although the previous test was well in the normal range. Looking at the test results I was not concerned, especially as those values had been slightly high before, and then went back down. But when I was with the doctor she said that the higher number on my test was what doctors call "stage 4 kidney failure".

Now, if that had been the first thing I had heard or read, I would have had a strong reaction! But I didn't because I knew what the numbers were and they were not very high, and now I know that that is just a phrase they assign when a certain value is over a certain number. It doesn't mean that is what I have, and sure enough the doc said she was not concerned either because it goes up and down again.

So....just saying, information is power and any time I am scared I seek good reliable information (not just what people say on the internet). Often things are not as bad as our fears will tell us. Wait to see what the proper interpretation of those words is.
All the best of luck to you!

 

[cookiebaker]

information is power and any time I am scared I seek good reliable information

As ever, you are such a calming influence, Sunkacola.. and for that I am very grateful.. your comments are EXACTLY what i needed to hear at this time..

As long as I dont think too much about it, I will be fine until I can have that conversation with my doc.. it's just the waiting to have that conversation that is HARD! I am trying to be patient...
I really need to stop looking at test results and imaging reports ahead of time, makes me crazy but it is so easy to do.. just log into my account and there they are..

 

[Cutiegirl]

What a challenging day you had yesterday. That's a lot of maneuvering that you had to do. So glad you got through it! And now the wait is on to see what the doc has to say. I also find it hard to be patient. Usually I have to distract myself with other things (a good book, puzzle, planning a special meal, or calling a friend). If things are really bad (please don't laugh) but my husband and I put on Christmas music or watch a Christmas movie. Since we both love Christmas it works well in our home.

 

[cookiebaker]

and of course the doctor's assistant tried to call me yesterday while I was enroute to a different appointment.. and by the time i got back home and was able to return the call, I got voicemail.. arrrgh!

waiting (somewhat impatiently) for a return call this morning (i hope)

 

[JayCS]

Oh dear, you have got a lot on your plate at the moment!

Part of my reason for wanting/needing to whine is due to the fact that I came out of the MRI feeling worse/in more pain

Hope that didn't take too long to stop as completely as possible and doesn't leave you anxious about a possible next time!

Since I'm in the tube once a year cos of my (harmless?) spinal tumour I've built up a little toolbox. Don't know if anything out of it can help you next time, or anyone, and I do realize this is the moan & vent forum, so: sorry if this is daft....
For the noise I imagine I'm dancing to the rhythm. For the claustrophobia I never open my eyes, imagine it as cozy and do relaxation exercises, esp. Yoga Nidra (like at the dentist's). For my bladder I (will...) make sure I go immediately before and drink less. For my back I do stretches before and after, for my arch I ask for or bring a small cushion for under my hunchback (I try out at home what might work). For the draught (I get a sore throat/cold otherwise) I put on a loop scarf and if it's cold outside long johns. For the diagnoses I apply the Serenity Prayer.

but the terms "severe" and "very severe" are concerning

P'raps this is also a bit comforting:
We'd think that scans are something factual at last.... but I've often had scans and other tests that have been interpreted very differently by different docs to the point of completely denying something (like osteoarthritis of the hip; the according sharp shooting pain I got down by trying lots of different kinds of PT). Or a neurosurgeon "of course" as some other people recommended to get the spinal tumour out, so it doesn't make me worry. I talked with at least 10 people, docs and otherwise, who supported my way of focusing on what I can change & keeping it checked. So I like putting things into perspective by asking several docs and for back (10+ diagnoses alone) etc. many types of PT...
Music is like for @Cutiegirl also one of my dearest forms of "distraction" or hopefully "pure enjoyment". Any binding, praps best emotional stuff, why not Christmas!? . Looking thru worldwide internet radio I was surprised how many pure Christmas radio stations the US has!

 

[cookiebaker]

No call back as yet.. still waiting.. *and the anxiety level is climbing*

Hope that didn't take too long to stop as completely as possible and doesn't leave you anxious about a possible next time!

by the time i got back to my car the leg was much better.. still have moments of pain in the pelvis (SI joints) but eh, i have had worse at times so not a huge problem at this point.

Don't know if anything out of it can help you next time, or anyone, and I do realize this is the moan & vent forum, so: sorry if this is daft....

LOL, Nothing is daft, dear @JayCS - your comments are completely welcome, and appropriate if they help someone.
The noise is the hardest part for me - it is just SO loud.. and having tinnitus makes it that much worse. (loud noises in general are bothersome)
Claustrophobia is not an issue for me at all, but i know it is for others. Like you, i just think of it as a cozy space... altho it could do with being a bit more comfortable... nice cozy blankie would be great! the head cage was new, tho, and not the most comfortable thing.

I've often had scans and other tests that have been interpreted very differently by different docs

yeah, and this is why I am trying my best to stay calm until i can speak with doc/doc's assistant about things, and find out the recommendations and/or course of action.
however, this is the first time i have seen comments suggesting "severe/very severe" anything.. all the other imaging reports have read "mild" or "moderate" (even if things "feel" worse than that) Even the x-ray reports of the neck read as "mild" degenerative changes.. But, like you said.. different docs doing the reading, so, yeah.. different results to be expected. (and yes, i am aware that x-rays often do not show some things like an MRI will)
the MRI was not compared to the x-rays from last May - no comparison MRI in my history either.. so this is a completely independent image and report.

I will say that what I feel physically has definitely gotten worse over the last few months, and even more so since my fall 2 weeks ago.. that seems to have caused a major flare... not really surprised by that, however.. falls seem to do that. Both arms get random stabbing pains, anywhere from the shoulder on down to the hands.. even slight pressure in the palms (like walking with a cane) can cause major pain..

I want to thank everyone that has commented/supported me here.. just talking about things really helps a lot.. maybe more than you realize.

 

[JayCS]

having tinnitus makes it that much worse. (loud noises in general are bothersome)

Ouch! That makes my wife extremely noise sensitive and she.also hates ear plugs, altho she's only tried 2 kinds I think, but does use the wax sort when she hasn't a choice. For some the inner noise sensations then get more irritating. I use ear plugs most of the time in most summer nights, but got a bit annoying with the wax towards the end, had to work on getting it out again. How do ear plugs work for you?

the head cage was new, tho

Whoo... new to me too, even tho I've had my head alone which found out that my focal seizures comes from cortex in my speech centre.
No, does not look comfy, I'll need a new tool for that one! . But I have managed to transfer the lovely tingly feeling in my toes from Yoga Nidra to my finger tips, and trying to get it in my head too. That reminds me of these metal wire head massage tools, where's mine, I need it!! Anyone remember them? Made me go "aaaaaahhhhhh"..... and yet then they got put away into the corner - from disregard of (self-)care?

even more so since my fall 2 weeks ago

That wakes my / quite a bit of hope that it'll be reversible , even tho a flare from a fall would in my case linger on weeks to months...
Local pains quicker as soon as I find the right trick - but yours may of course be "deeper" and so tougher if connected to something more chronic.

 

[cookiebaker]

That reminds me of these metal wire head massage tools,

Ha! I do remember those.. and they were "interesting" lol

Finally got my call back from the doc's office.. I am being referred to pain management to schedule nerve block injections in the neck...
going to be very honest here.. not looking forward to this.. having them done in the low back was bad enough.. but this is what doc seems to think is the next step (PT did not help), so this is what we do..

 

[Cutiegirl]

My husband has nerve block injections done to his neck a couple of times a year. It does a great job in providing relief. And he is finally having surgery done around his thumb joint this week. The surgeon is taking out the osteo-arthritic bone and replacing it with tendon taken from his arm. The tendon will allow him to have mobility. Prior to this, surgeons just fused the bone and he wouldn't have had any thumb movement then. Fingers crossed that it will be successful. He is tired of being in pain around his wrists and thumbs. His doc has him on slow release morphine. It would be good for him to cut back as he has been on it for years (we've been waiting for this surgery for a long time.)

 

[cookiebaker]

My husband has nerve block injections done to his neck a couple of times a year. It does a great job in providing relief.

thank you for that, Cutiegirl! that is something i needed to hear!
the only part that bothers me is having to have it done a couple times a year - my partner has to take time off work every time i need something like this done - thankfully he has a very understanding boss... I would really prefer to have something done with longer term results, but we have to start somewhere, right?

 

[cookiebaker]

well, phooey... was hoping to get a phone call today to schedule the injections.. but nada... then partner reminded me it is Columbus Day here so hopefully tomorrow..

did not sleep all that well last night, feeling a bit shaky today (as in weak, muscles not wanting to cooperate)

been kind of thinking of getting a 2nd opinion on the neck issue.. there is a very good orthopedic clinic in the area.. they did a fantastic job with my wrist when i injured it a few years ago - had torn the TFCC (triangular fibrocartilage complex) in a fall. Was told by the big clinic there was really nothing they could do for me besides physical therapy (which did basically nothing) I went to this other clinic for a second opinion and was offered arthroscopic surgery to clean up torn tissue that was causing irritation and pain.. After surgery and about 6-8 weeks of rehab, i had 95% function back.. but yeah... there was nothing they could do at the big clinic...

 

[cookiebaker]

wow.. i am just gobsmacked... and REALLY disappointed..

I called pain management this afternoon about my low dose N prescription.. finally able to get that process started...

and while i had them on the phone, i asked about a supposed referral for injections in my neck.. come to find out, the referral had not been sent over.. after a few minutes of checking, the nurse did confirm and get me over to the appointments desk so we could schedule things, but holy cats, i cant believe the doc had not sent in the referral right away.. that should have been done by last Friday at the latest.. MRI was last Wednesday.. I was called on Thursday afternoon, initially.. did not actually get to speak to the assistant until Friday tho.

 

[JayCS]

supposed referral for injections

That and answering @Nickimclean's first post just now reminded me that I'd actually asked my GP months ahead if he could get me a quicker referral to a rheum, and he'd said yes. 3 months later (summer hols in between) I asked again, and.... he'd forgotten.... . Embarrassed, he made a suggestion which actually did lead to a workaround, however not to the final diagnosis....
My wife was so angry, she wanted me to switch GPs, but I don't know one I'd trust more at the moment, after my previous one had gone in retirement....

 

[cookiebaker]

My wife was so angry,

lol, I am the angry one here.. but yeah, i get it..
and even if I do decide to go for a 2nd opinion, that will take time as well, so either way, this is taking longer than i would really like..

however - I just got a phone call pushing the first test injection to two weeks sooner than we had originally scheduled (due to a cancellation) so I am feeling a bit better about things.. still in a lot of pain in the meantime, but having the appointments made is something to look forward to, rather than floating in limbo waiting..