Monday, May 18, 2015

The Hunch Back of Notre Minneapolis?

OK, I was torn between the title I used, or using the tune from the Black Eyed Peas "My Humps", and just replacing it with My Bump. It would have been much funnier! I can hear Don groaning right now! I was singing it last night, and he made a bad face. Oh Don. 

I have a bump. A round, ugly, painful icky bump. I first noticed the bump a few weeks after I had my
second neck surgery in October of 2014. It was right at the bottom of my surgical scar, and my first thought was that it was caused from an irritation from the doctor taking a "punch" of bone out of one of my discs. They used the bone to implant at the C5 level to get bone to grow where the center of the disc had been removed and failed to grow during the first surgery. I had seen the x-ray, and it literally looked like they took a paper punch and punched out the center of one of the edges of the disc and left sharp rough edges remaining. I felt worried about it, and mad. Seriously, couldn't they have taken one of the files off of their equipment shelf and sanded it down a little?

When I went in for my two month post-op check up I asked the surgeon about it. He said that it was just scar tissue, and completely normal. It didn't feel normal. It hurt, and felt sharp. But, who was I to know better? Just the person with the bump.

Since the pain in my neck and shoulder hadn't gone away, I had started going to a pain clinic. I asked the nurse about my bump, and she suggested I have my primary care doctor look at it. So I did. I'm a good listener. Back in my car I go.

My primary care doctor also thought it was just scar tissue, but ordered an MRI and suggested I go to a fancy schmancy neck guru at Abbott Northwestern Hospital in Minneapolis for a second opinion on my neck. So I did. Again, I'm a good listener. No answer about my bump, but back in my car I go.

The fancy doctor in Minneapolis didn't even touch me. He ordered a CT and EMG and didn't really even tell me how or when they would be in touch. A week later I received a COPY of a letter that he had sent to my primary care doctor stating that the discs above and below the C5 disc I had surgery on were deteriorating, but weren't yet ready for surgery. "The patient" (that would be me) should proceed with cautious treatment for the time being.

The patient (me) waited to hear from someone, anyone, to figure out what that meant. I never did, so I took matters in to my own hands again. I called the guru's office and talked to the nurse. She said that there is damage in my neck, but doing surgery at this time isn't recommended (thank goodness) and I should try imagery, physical therapy, ice, heat...she went on and on. It was almost comical. It told me just how little she and the guru actually knew about me and my history. It also told me that they didn't read any of the eight pages of information I had to fill out in order to walk through their front door. The guru would not be seeing me again. But, now I had imagery in my hands, so I went back to the pain clinic. Back in my car I go.....

The nurse practitioner at the pain clinic took my images and spoke to one of the anesthesiologists who does procedures at the clinic, and suggested that it was time to do a Radiofrequency Ablation. The easy way to understand it is that they go in between the discs to reach the inflamed nerves with a cannula or large needle casing, and insert a radio frequency electrode to zap the nerve and burn it. The nerve will grow back, but usually not for 6-12 months. While it is dead, your brain will not receive pain signals from the nerves. The patient is thinking this sounds awesome.

In order for insurance to pay for this procedure, two tests have to be done first with just lidocaine to make sure they have the right nerves. The nurse thought that it should be the two discs below my surgery, especially since my friendly BUMP lived down there and appeared to cause me a lot of pain.

I went in for my first test and the doctor met with me a few minutes before the procedure. He pulled up my films, and for the first time in the past few years, he just talked and listened. It was amazing. He didn't agree with the placement of the test, and felt that the Ablation procedure needed to be between the three discs above my surgery. I then asked him about my bump. He felt it, and the first thing he said is that he thought it was a screw, even going so far as to say that he could feel the round head of the screw. He seemed very curious about it, and said that whatever it was we needed to look at it. It appeared very irritated, and almost bruised. He said that the procedure they would be doing would be done under xray, so he would have the radiologist move the machine over that area.

Guess what. The bump is a disc that has turned, most likely from all of the spasms and irritation in my neck. I have so much tension in my shoulders and neck. So the lump you see is the spiky part of a disc that should be laying or lying or even telling the truth horizontally with my shoulders. "Not cool"...said the patient.

The wrap up:
Test number one worked great. I had amazing relief for thirty minutes. I had to wait for two weeks between the tests, so test number two is tomorrow. Don is busy tomorrow, so Andrew stepped up to the plate and is taking me. I am very grateful, and hopefully I will get the same kind of relief that I did after the first test. I'm not sure how soon they can perform the procedure after that, but I'm hoping it's soon.

I start physical therapy the first week in June to try to loosen up the muscles and tension, and maybe Mr. Bump will go back and live where he's supposed to. It will only be myofacial release (massage, woot woot) for several weeks. Nothing that will irritate it more. I literally want to hug that doctor right now. All it took was ten minutes of listening, and some compassion.

Maybe it was just some compassion.

Thursday, April 9, 2015

A Lot of Brew Ha Ha For Nothing?

It's been a busy few weeks for trying to get some answers as to why I am having such debilitating neck pain, and also just feeling so awful in general. Fun stuff.

The feeling yucky in general thing I think we figured out. At least kind of. For some reason my potassium dropped to a dangerously low level. After swallowing potassium tablets and eating bananas, beans and spinach like it was going out of style for two weeks, I am back in the way healthy level. Now I have to take NO potassium tablets and see what happens during the next three weeks. If it stays where it's supposed to be, great. If not, back for more testing. I already have a thyroid that doesn't function anymore, so she thinks that some sort of  lab panel that would test my adrenal gland as well as other hormone affecting bodily items would be the way to go. I agree. I didn't like feeling like that.

My neck. My neck is awful. I went to a physician two weeks ago at Abbott Northwestern Hospital
who has the reputation of being the "guru" of neck pain. What I didn't realize when I was referred to him was that if you don't need surgery, he really won't have any answers. Very frustrating.

After filling out massive history forms and waiting a month to get in to see him, I had about a fifteen minute appointment with him. He never touched me or looked at my neck. His nurse had me squeeze her fingers and made note of my loss of strength, especially in my right arm, and had me try to walk a straight line for her. She made note of my inability to do so. No drinking and driving for this girl, not that I have...for many many years. (Shhh Pam. We were children) I have been dealing with my balance being "off" for the past couple months. The doctor ordered a CT scan to get a look at my neck in addition to the MRI I had already had done, and also an EMG to test the nerves in my right arm. I have on and off numbness in my fingers and the palm of my hand, as well as my upper arm.

I didn't hear anything the first week, but this week I received a LETTER. Actually, it was a copy of a letter that was sent to my primary care physician who referred me to this doctor. Part of me felt offended. I am the patient. Once my feeling of being continuously disrespected by upper level physicians passed I looked at it for what it was. A time saving issue, and a lack of respect toward his patient, me. I was mad. Mad and depressed. I get frustrated when I spend so much time to go to a new physician completely prepared and get so little in return.

Basically, the EMG showed no permanent nerve damage which is a good thing. But what does the numbness mean? explanation in the letter. The CT showed that the last surgery I had was successful. The hardware was in place, and the bone was growing. That was good news, because I had been very afraid that there was a screw loose (Be careful about the jokes. I know that I have always had a screw loose!). When I had bunion surgery many years ago there was a permanent pin put in my toe, and my body rejected it. I kept telling Don that there was something sharp coming out of my toe. He didn't believe me until the pin protruded through the skin and he could see it. That was NOT COOL!

Anyway, the other thing the CT showed was that the disc above and below the fusion have degenerated since I had the surgery in October. It's pretty common for discs to weaken once you have spinal surgery, and it's one of the reasons that they hold off as long as they can to do invasive procedures. Once you have surgery, it will usually lead to more trouble down the road. Trust me, go with the physical therapy and injections as long as you can tolerate it! So, they are degenerated, but not enough for surgery, and the surgeon felt that at this point if he did surgery to fuse these discs, it would cause even more pain. He wasn't ready to do that yet.

Here's the clincher. He ended the letter with his recommendation: a conservative line of treatment. OK. What would that be? Hello? Are you still there? Nope. End of letter. What the hell?

I waited for a couple more days thinking that his nurse would call to schedule an appointment to discuss this conservative line of treatment. I couldn't imagine what it would be. I am seeing a therapist every week and we are currently working on meditation for pain and relaxation. I have done and will continue to do trigger point injections, epidural injections and facet joint injections, and I also take a cocktail of medications for nerve pain, pain in general and a muscle relaxant. My hope was that this specialist would have a suggestion for killing my neck, or at least the nerves that live within my neck. but nope. No suggestions, just a sign off. Not even a thank you for giving me thousands of your dollars.

So, after the pouting and self pity were over, about 48 hours later, I called the office of said guru and asked to talk to a nurse to help explain to me where to go from here. Another day passed before she called back which was understandable. She said she needed to think it over because she wasn't used to dealing with pain. WHAT??? She suggested all of the above things that I was already doing through the pain clinic that I go to, so I suggested that she send a copy of all of the records and reports to my pain clinic so they had more to work with. Apparently they are going to have to be my advocate in this game. It doesn't make me very happy. I was honestly thinking of leaving the pain clinic because it is such an uncaring and desperate place to go. I tried to explain how awful it was to even sit in the waiting room to Don, but he couldn't really grasp it until he had to sit there for an hour while he was waiting for me to have a procedure done.

It is a thankless job, and the staff must burn out so fast. I would think that people would be so grateful for having their pain relieved, or their medications filled, but many of the patients are so uncomfortable and miserable that they can't see beyond the fact that they can't stand to wait for their appointments. The government restrictions on narcotics have made it even harder for these patients to take care of themselves. Many of them don't drive and are in wheelchairs. They have crabby taxi drivers or services that drop them off and pick them up. They are at the mercy of others to help them, and if those others aren't being nice, it is miserable. They can literally only get their prescriptions filled on the 30th day. I know, because I am one of those patients. I once had my appointment 29 days after my last appointment and after my appointment I drove my prescription to the only pharmacy that I am allowed to fill it at. I had to drive back the next day. It is no ones fault. It is a government regulation in Minnesota, and I have to be seen every thirty days. I also have to have a drug screen to make sure that I am taking my medication. Fun stuff. I am no different than anyone else sitting in that room as far as the government regulations are concerned. Thankfully those are just random, and I have no problem with it. I'm not selling my meds on the street so I can feed my babies. I digress. And I'm going to digress some more!

The biggest thing I have noticed in the waiting room is that no one seems to have any respect or care for those around them. There are big signs all over the place that say "No cell phone use" and "No E-Cigarette use" and "No Perfume Use In Office Due to Patient and Employee Sensitivities". I have never seen anyone trying to smoke an E-Cigarette, but it never fails that I will be sitting in the waiting room with a pounding headache, and two people will be talking in full volume on their phones. And there is always stinky perfume. I absolutely hate it. My sister and her husband have a pain clinic in a different state, and she has said that she will walk out from the desk and tell people to turn off their phones, but at this clinic no one says anything. I was hoping to some day be done with this, but it looks like I have to learn to just be patient. Maybe this is where my meditation will come in the most handy. Ohhhmmmm.

So, that's where I'm at. Riding in the car for more than a short distance is still impossible. Any further and I end up with a headache that nothing touches from my neck being jostled (yes, I have a neck brace) and a numb arm. I somehow have to figure out how to make it work. I refuse to spend my summer stranded. It makes me so sad to see Don leave every weekend and go to the lake by himself. I am beyond happy that he is willing to go to the bar on the lake and play pool with his friends, but I would like to be there once in a while too, and see the remodeled basement. I haven't seen it since he started to tear it apart.

I want you to know that I don't just lay in bed. A lot of the time, yes. I don't move, usually because I am recovering from the other days when I had to get up and go to appointments, get groceries, do laundry and housework, make dinner, and of course, let Brutus out twenty times a day! I am trying very hard to not completely give up on life and everything I do. I know that keeping somewhat active will help my muscles to stay strong, or to at least get a little stronger. I will do whatever I am told to do, even if it hurts, but I am not going to do something unnecessary that is going to cause me to have a big set back.

To my friends who I love and never get to see, please understand and know that I have been through a lot with three spinal fusions in the last three years, and with my first neck fusion failing and having to do a repeat through the back, it's really taking a long time to heal and move beyond the extra stuff. I'm bummed that I have degenerative disc disease, but my neck has been through more than its share of trauma over its lifetime. Now I have to learn how to care for it and protect it so it doesn't get too much worse. Maybe someone should develop a wine that has a super duper amount of calcium in it! There's a challenge for you.

Thank you for listening. I love you, and am looking very forward to figuring out how to get my life back so I can kiss your sweet faces. In the meantime, I am going to rock it out. Maybe even Snooki style.