frustrated

[dealsniffer]

Hi-was waiting for the results from my ct scan that was supposed to determine what treatment I need (4th surgery or something else) but I got a call this week that my specialist saw the ct scan results and now wants me to get an MRI. His assistant is the one that called me and talked to me and she couldn't give any info really on why. the thing is, the wait to get in for an MRI is months. one friend has been waiting 3months and she still has yet to get a date booked and then once the date is booked it will probably be another month or so. Another friend's husband is considered non urgent and he could be waiting 6months. I don't know what I and considered but I am pretty sure it isn't considered urgent. fine I have to wait more but the most difficult part of the waiting is the amount of pain I am in. I go into town for a couple hours and the pain that comes with it has me stuck recovering for 2 days that I can't do much of anything. I am not trying to complain but I am just frustrated with my limitations and that I have to wait longer. It took 3 months for the ct scan and results (well sort of results). if I do need more surgery it could likely be another year of my life spent kind of in limbo and in a lot of pain. I am trying to make the most of it and I am reading lots but it would be nice to have a little variety. plus a relative of ours died and I can't go to the funeral because my back is in such bad shape which is incredibly not fair. maybe somehow I will get in sooner than expected. I can always hope right?

On the plus side, I feel it is nice to know how the next few months should be in terms of limitations and stuff. I feel I can at least make some plans with not too much concern that they will need to be changed. Before I got the call this week, the next several months were really up in the air because I didn't know what would be happening and what plans I could make safely. so oddly it is kind of nice feeling I have some control over the next few months.

[vesper]

I am so sorry to hear that.

the thing is, the wait to get in for an MRI is months

When I left Banff a few years ago, there was talk of opening private MRI clinics in Alberta Not sure if that happened or not, but if they did, might want to consider that. get results in days rather than months.

I totally feel horrible folks have to wait so fricken long for healthcare!

[MakeCents?]

Awww. I know your pain a little too well. It was originally thought that I developed PolyNeuropathy after going thru Cancer Treatments.(one of the worse side effects)
I have severe nerve damage in my CNS (Central Nervous System) and it feels like my soul is on fire 24/7. and on days when I flare up it's like a lightning storm from head to toe. I blew out my L4/5 while working in a Butcher shop 5 yrs ago and nothings been the same for me since. It takes a series of tests to determine what the problem is when it comes to nerve damage and it sounds like that is what they are testing you for. Sad tho you have to wait so long in btwn. Sometimes until "the right" symptoms show up they aren't always able to diagnose what is wrong. It took me several months to get in to see the Neurologist I have today. For years i was told it was Chronic Pain/Fibromyalgia and there wasn't much that could be done for it, turns out it was actually LUPUS I'd been living with undiagnosed for almost a cpl decades! Its well managed for the most part but Winter/Summer (esp where I live) make it nerly unbearable at times. Hopefully it's nothing too serious maybe a bad case of Sciatica (again easier to manage) Limitations are something that will change/vary day to day sometimes. I can go months (knock on wood) without a flare~up and be somewhat productive but when it hits, its gawd~awful. Near blinding Migraines/Ataxia (trouble walking)/hurts to breathe you name it. Sending you some positive vibes that everything is known soon!

[dealsniffer]

thanks Vesper and Makecents.
Vesper they actually did open one but as far as I understand, it is a private clinic if I am thinking of the same place that has their own MRI machine? but I think the cost is close to 5000 a year to be a patient and I sadly do not have that kind of money. maybe I should look into it further though
Makecents-so sorry to hear that you have gone through such tough stuff. the first three surgeries had to do with my back because of Kyphosis. the first was to put rods in, second was to refasten a rod where the screw came loose, and the third was because the rod broke last year. I am thinking it is to do with nerve stuff as well. Between my second and third surgeries I was getting spinal injections for extreme pain and I am thinking it possibly had to do with something where the scar tissue forms around the nerves and pinches them and causes terrible pain. but I am not sure. my specialist is amazing though and I am hoping he will find what is wrong. I have the sciatica as well and it sucks when it flares up.

[i_forget]

No advice here. Just wanted to tell you I am sorry for your pain and I hope you get in soon.

[avoncallingu]

Oh dealsniffer, I'm so sorry to hear you are going through this. I remember you talking about the rod breaking last year. You've been through so much! Have you ever tried any "parallel" therapies such as meditation or reiki? I hope you can get some answers soon and then move forward towards total health. Thinking about you!

[abbasgirl]

Aw!!! That does sound really frustrating! I really hope things get better for you soon.

[dealsniffer]

thanks i_forget, avoncallingyou and abbasgirl. other therapies might be something to check into for sure. I hate taking painkillers unless absolutely necessary because I can only imagine what they do to my body. but most days I have to take stuff. I really appreciate all your kind words

[MakeCents?]

That sucks Dealsniffer Esp when the rods slip or fail more than once.
There are soo many things I miss out on doing. Esp w/the kids the last 5 yrs. (sometimes that hurts more than the pain)
I <3 my Neurosurgeon! He's the Dean of Neurology at UofM and is st the forefront of trial medicines and procedures!
I'm doing everything humanly possible to put off surgery as long as I can!
I'm mortified b/c my body attempted to reject the Mesh Implants I had when I had an Ememrgency Radical Hysterectomy and Bladder/Vag rebuild (Cervical Cancer)
From what I understand it's the same type of encasement Material they use.
Did they use adjustable rods to help stabilize your spine? I don't know much about Kyphosis other than its a degenerative condition that severely curves the spine.
Hoping to push off surgery another 7/10 yrs. at least. But I also know I am one bad fall away from it too!
Winnipeg Winters are brutal so I am somewhat housebound as long as it's -30 or lower. B/c of the PN I have limited feeling in my hands and feet, should I get frostbitten I wouldn't feel it, smaeway I can't feel being sunburnt
Once my girl has graduated high school and is on her own safely and securely then I'll consider it.
But one of my worst fears has always been to permanently lose my ability to walk.

[dealsniffer]

that sucks Makecents. I definitely understand the missing out on stuff part. it definitely can be worse than the pain like you said. It is so great that you have a wonderful neurosurgeon! a great doctor makes a big difference. the rods are not adjustable no. I hope you are able to push off surgery as long as you are hoping as well.
I have heard how bad winnepeg winters are and I know that here in Alberta it isn't as bad but our winters are all over the map. rollercoaster ride temperatures. it can go from -30 to +2 in a couple days and back again. it is hard on the body to go through the drastic changes in temps.
it is weird you mention loss of feeling because when i had my first surgery I lost feeling in the skin on my thighs and it never came back. the nerves were cut for the surgery and I had lost a lot of feeling temporarily but some of it came back and some didn't. my back (the skin and probably just underneath it as well) had not feeling for several months but sadly the muscles and stuff did so I had to deal with post op pain. I sometimes wished that the loss of feeling had gone a little deeper so that I could have avoided some of the painkillers. lol I remember when I started getting feeling back in my back and feeling clothing against my skin really threw me for quite a loop because it was like I forgot what the sensation was. it took a bit to retrain my brain almost. when hair brushed against my back (after it started getting feeling back) for the first time I screamed. but the feeling in my thighs has never come back and I have burned my legs a few times with my laptop. lol I don't feel the heat of the laptop till it has gone deep enough past the part that doesn't have feeling. not a terrible burn though. not like blisters but just minor.

[Natalka]

Aw, deals, sorry you have to wait to deal with all this. Perhaps you can really stress to your doc/specialist how important it is that you are classified as an emergent case and need the MRI asap.

Wishing you all the best, as always!

[Dee09]

positive thoughts and wishes sent your way deals

[dealsniffer]

thanks Natalka and Dee