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? Hmmm...no 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.