No changes

The good news is I had an MRI last Saturday and it showed nothing. No rotator cuff tear (I knew that but everyone kept jumping to that), no bursitis (surprising since everyone's told me I've had that for ages). All good, and I am definitely relieved b/c if it was a tear then I'd have to contemplate shoulder surgery and who has the time (or energy) for that? I've already decided to push back my hand surgery till the new year so I will have a full FSA account and days off.

But the question still remains, what the F*** is going on w/ my neck??? I see Dr. Ahmed (the anesthesiologist/pain dr) on the 6th. The other drs think he will want to do another epidural. Fun stuff! But if it works then it's fine because the pain has actually been really bad this week, especially in my shoulder and upper arm. I am praying that it will work this time because tomorrow is 10 weeks and I'm seriously going to lose my mind, or what's left of it!

9 weeks and still (sadly) counting

Well I just don't know what to do anymore. I'm at a complete loss. Did the epidural injection work? It might have helped a little with the inflammation in the nerve in my spine, but I still have pain in my shoulder and down my arm, as well as pins and needles. My trapezius muscles are v. v. tight. I asked Dr. P what to do and he said I could try at home traction (don't have one), muscle relaxers, or dry needling. So I tried the muscle relaxers. Of course the next day when he got back to me he said which ones to try, and the one I used was left over from my hip surgery. All it did was give me restless leg syndrome and I was up all night from it, dry as a bone, eyes hurting from being so dry and dehydrated. Must remember to toss out any remaining pills. It was something w/ at T. Anyway then I rang my acupuncturist. He said that he could try some treatment that wouldn't increase the inflammation. I went last night, and felt a little better after, even though the needles hurt like hell - surprising because they don't really normally hurt. But today my neck /spine hurts and the shoulder hurts and the pins and needles are still the same. I'm am going to lose what is left of my mind. Mark did notice last night that my right side seemed weaker - I told him I'm not surprised b/c I've been guarding it and using my left side - which explained why when he touched my left trapezius muscle I screamed - it's been working overtime. Thank goodness it is Friday and I don't have to sit for two days at a computer. I am getting very worried though because time is running out to sort this before October and Italy. There is no way I'll survive that trip like this. Something must be done! Two weeks until I see the anesthesiologist again, perhaps I should see if I can get an appointment sooner. He might have to do another epidural. I also definitely need an MRI of my shoulder, so wondering if I should have that arranged because perhaps this is coming from there as well and a shot in there would be good? I don't mean the one Dr. P. did a month ago, I mean like they did with my hip where they really get into the joint. I have to ask someone and hopefully get some information because I am so worn out I could just give up at this point - and I'm sadly not even trying to be dramatic.

Beyond frustration

The injection so far hasn't seemed to do much of anything to my body. Last night I thought perhaps I had less pain in my neck, but that is probably because my shoulder was killing me it was taking all the attention away. This morning I have pain in my neck and also stabbing pain in my shoulder. I never heard back again from Dr. P about what to do w/ exercising at home so I've not done anything as when I was in PT they told me to not do anything if I was in pain. I am so confused. Granted I've heard it could take another week or so for the injection to kick in but yes, I'm slightly impatient. (At this point I have a right to be, it's been 8 weeks of this crap!) The pain in my neck does seem a bit higher today though and not in the joint where they injected it. I'm losing my mind. Part of me thinks I should call Dr. Kelly up and have him check out my shoulder, perhaps it is surgical after all, but then again, there's nothing I could do until after October because of my trip. I go back to see Dr. Ahmed on the 6th August, perhaps he'll have some ideas then. My head is spinning, as was the rest of my insides this morning when I had a massive blood pressure drop from out of nowhere. I hate when that happens. Feeling a bit better now but just want to rest, not be sitting in the office uncomfortably.
Ok, I am done with the whinging for now. I just want my life back!

Post - injection

Thankfully it all was worked out. Friday am I received another call from Dr. Wu's office saying I needed another blood test. I rang back and explained the procedure was set up for Tuesday and that unless the results would be back by Monday I wasn't going to have it. The assistant said to ring the dr at his Queens office. What a backwards place that is! I tried ringing and either got a busy or fax sound. I rang the assistant back to make sure it was the wrong number and told him and he said that you have to let the fax go on and when someone is there and the realise it's not a fax they will answer. Quite frustrating. So I finally gave up with that concept and sent a fax in big black marker asking the dr to ring me ASAP - which was about an hour or so later. He said there was one more test, but I probably was ok b/c of previous results, but to be sure I needed this one. I said all the other dr's said the test results were fine and he said most likely but he couldn't definitively say. By this time I had received a call from Dr. Ahmed's office saying someone cancelled for Monday am and I could have that slot. I asked Dr. Wu when the results would be back and he said Tuesday so I said no thanks, I'm just going to go have the test done. Truly there is only so much you can put up with. Just like I'm not going to have an X-ray taken to see if my neck is lax when we know it is already. No wonder the health system is such crap in this country. They overdo tests when you don't need them and the people that do don't get them! Anyway, I digress.

So Monday I went to the hospital at 10 for an 11 am appointment. They put an IV in me for fluids and electrolytes, but no meds. I thought I would be out but when the doctor came down to talk to me he said they wanted me awake so I could tell them if they were in the right spot. This didn't sound like an enjoyable concept but I guess there is a better chance of it working if you can get the medicine as close as possible to the correct spot. I went up about half an hour or so later and the worst part was laying down on the table. They had a couple of pillows that went under my chest and this big foam cut out with a mirror under it to put my head on. This and laying on my back flat are the most painful for me currently. I told him so he said to try to get in a comfortable position, but I told him there was no way like this so lets just get it over with. He was concerned I wouldn't make it but afterwards said I was a trooper as he couldn't believe how I didn't move. I was too afraid to move, and also figured it would go faster so I tried to zone out.

First they put a local in my neck. That burned a lot but I've had worse so whatever. After that they put in the contrast, and then poke around, whilst continually taking x-rays, to see where they are near the nerve and spine. At times I had the strongest stabbing pain down to my right third finger and I told him. The procedure is quite interactive! That happened about twice I think. I also think it mean it was near where he wanted to get so it was good. The pain would go away pretty much as soon as he moved the catheter away from the spot. It was freaky having someone mess around with your nerves and feeling how they control different parts.

After he found the spot he had to push the medicine in. They go very slowly with this,especially, as the dr explained after, that the nerve area was quite narrow. The extra pressure can cause more pain whilst injecting it. Thankfully it didn't really with me and next thing I knew we were done and he was cleaning up the iodine. They sat me up carefully and I was feeling okay, a little light headed but not too much. The dr then showed me the images of my spine and the injection and explained what he did and what I might experience. He told me to rest the rest of the day and put ice on my neck if it hurt, and I could take pain killers if I wanted, but I usually avoid those like the plague. Some nice wine is much more preferable to me. Then I was wheeled back down into the nurses are where my parents were waiting for me. All in all not the first choice of things to do with free time but it's nothing compared to what I've been through. The hip surgery still remains the all time tops of nightmares, and the brutal ER visit last year the second.

I iced and just vegged on the couch for the rest of the day yesterday and came to work today. Taking it easy. Have some mid back pain on the right side but think that's more from being a couch potato the last 7.5 weeks as it's been getting worse for about a week. At this moment I'm icing my neck as it was hurting after going out for lunch. Should have had a liquid one! Ha!
So that's that and we will see if it (G-d willingly) kicks in and works in the next few days. So far I still have pins and needles depending on how I'm standing/sitting and stabbing in my neck depending on how I move, but as he said, it can take a few days. Fingers crossed!

Bit of a roller coaster

Yesterday I had an appointment with Dr. Ahmed, the anesthesia pain doctor. First I met with his assistant/resident and was asked a million questions and then examined. More agony. Then the doctor came in, he was very nice, but of course had to do his own exam, so more torture. I was a wreck yesterday with pain from all the twisting and moving and bending.

Anyway, first the resident mentioned something about having an electric stim implanted in my neck with a battery pack under my skin on my hips. My hips are big enough and I don't really like the thought of having things implanted in me that shouldn't be there. I said that sounds a bit too permanent for me. I was quite surprised he mentioned it even before mentioning the epidural. A bit fishy, perhaps he's doing some sort of study with it. He also told me he thinks I have a rotator cuff problem and wants me to have an MRI. I said fine, I've been trying to get the doctors to give me one for 3 years, but I can't do it until my neck is sorted because I can't lie down on my back flat. Then he asks if I've had an X-ray study of my neck to see if it's lax. I was like - dude! seriously? My whole body is lax - that is why I was diagnosed with HEDS/ hypermobility disorder! I told him I wasn't going to waste my time and money (and I don't need the extra radiation, Lord knows I've had more than my fair share) on something that we all know is a fact already. It's not like it's going to prove something and give us a magical solution to fix this. I passed along this info to Dr. Panagos who said, and I quote, "The name of the game is strengthening. Of course you are lax because of the EDS. There is a rotator cuff component to everything, but I think it is related to your neck versus a separate problem. Once your neck feels better, we will see how much pain is originating from the rotator cuff." I'm going with my trust in him, he knows my body slightly better.

Anyway, Dr. Ahmed was very nice and at said I could have the epidural. I asked him how soon and he said he'd check the calender. First he came back and said the earliest was the 20th! I looked right at him and said there was no way I was going to make it that long. (Today is 7 weeks of this crap!). He went back and then a few minutes later returned saying he could ask some other doctors to shuffle around so he could get the OR on Tuesday afternoon (not his usually scheduled time). I was so so grateful.

Then of course something had to happen. Right before I left work last night I received a message from Dr. Wu's office that he wanted to do one more test. I flipped, especially since I tried to ring back directly and they had the service on already. I spoke to his office this morning and the assistant knew nothing and said I could ring Dr. Wu in Queens after 11am. I have to find out what this is about because now that I'm scheduled for Monday morning (oh - did I forget to mention that? Dr. Ahmed's office just rang and said they had a cancellation for Monday am so they gave it to me!) I am not wanting to delay the procedure for some blood test when everything else has come back perfectly normal.

The stress is killing me! Fingers crossed it all works out and I can have this sorted on Monday!

Results of some kind

After driving Dr. Wu's assistant insane for the last day I finally have the results from yesterday. I rang him again at the end of yesterday (Tuesday) and he said he'd ring again and then I rang him this am (yes I'm persistent) and he said they were meant to come through this am but had not yet. I guess he rang them again or the lab has ESP as a few minutes later I received a fax with the results. I knew all would be fine, but whatever, it's done. I faxed them and the earlier results over to Dr. Panagos, sent him an email saying I was faxing them, and then rang his office to speak to his assistant. I realised I hadn't thought about if I need pre-approval for the injection or not and I was sure the dr's never thought about it, so wanted to find out for sure, I am trying to avoid any more delays. I told them I needed a CPT code so they said they'd ring the insurance company to find out. Poor Dr. P probably can't wait to get me sorted so I stop sending him emails constantly and driving his staff batty. I just need this sorted and quickly, Friday will be 7 weeks of this rubbish. I know there are people worse off than me but enough is enough. I have one medical nightmare after another and I'm just so over it. I've also lost humongous amounts of patience with everyone and everything (not that I had that much to begin with). I just want to feel like myself again and have my life back.

So, here's to praying I can get the injection without any more complications or delays by the end of THIS week and that it works! Please.............

Blood

They took about 4-5 vials of blood from one arm, then cut my other arm and waited to see how long it took to stop bleeding. Thankfully only 5 minutes - and they said that was good. So...waiting for the results of the platelet test. The lab said they should have them today but the haematologists office insists it will take 4-5 days - so I'm trying to not get my hopes up that I might actually get an injection this week.
Waiting for results to be faxed to Dr. Wu so he can fax to me so I can fax to Dr. P.
Time is going too slow at present.

Just as a reference - came across this article on ehow
http://www.ehow.com/how_5006778_cervical-radiculopathy-due-bone-spurs.html

Insurance and doctor hell

I won't bore you with the varied and numerous details about trying to get a lab and a doctor work together with ones insurance company when there is a daft blood test that is only done at particular places, but think of a very frustrating thing and then multiply it by 100! I swear, the more ill you are the more difficult it is to get treatment. Something has got to give in this bloody country with health care!

Just to give you an idea - the blood work taken a couple of weeks ago, one set cost over $700 - UHC paid $30 of it. (this was w/ an in-network lab, G-d only knows what would've been charged for an out-of-network lab) WHY CHARGE SO MUCH FOR A TEST THAT IS ONLY $30, if that??? The other set was over $800 and UHC paid $40. Now this is great if you have insurance, but for those millions of people who do not have medical insurance, why are they getting charged these exorbitant costs? It's no wonder you can go bankrupt and lose your home from being sick. Congress better sort this out and properly soon!

So the long and the short of it and what should probably be a few valiums later, I am going to Mt. Sinai tmrw am to the Phlebotomy lab for a bleeding test and a Platelet test. Even though Dr. Wu doesn't have privileges there, they are (Thankfully) letting me have the blood tests done there. Most hospitals won't let you do that - because everyone in the medical field are evil horrid people. Sorry I do have a few dr's I like but at the moment I hate the whole field.

Oh - and the pins and needles are worse so nerve damage is progressing - hopefully by the time we sort this out it won't be permanent. ARGH!