Update On My Crazy Week

I wanted to update everyone on the roller coaster I have been riding this week. I only started to feel better yesterday. It has been a real trial to me trying to wait out this last injection. I have really questioned myself and my judgement in not wanting to have any more invasive procedures done such as the SCS or the pain pump.
I am really getting sick and tired of the "band aid" fixes as I call them. It seems by the time they start working, its no time until they are wearing off. I am really tired of all the trial and error things that the pain management specialists want to "try and do" I am going to have to sit down and have a serious talk with my specialist about some long term solutions!
Even though I had relief from my back pain yesterday, I ended up with a stomach virus so I spent most of my day praying to the porcelain throne! If it is not one thing, I swear it is something else these days! It SUCKS to be me sometimes!
Today I am weak but not having to hug the throne at least. My pain is manageable. I had to keep my meds at a minimum yesterday so I could function. I hope by tomorrow I will start to get my energy back!

Sulking on Sunday

I very rarely sulk. However, today I am doing that very thing. I am still in a LOT of pain and feel that the pain management physician either did more than he should have or that he did not prepare me for the amount of inflammation that he was going to stir up with the added injecting he did on Wednesday. I had a Girl Scout meeting yesterday. I went to it but by the time I had sat there for an hour I was totally miserable. I came home to spend four hours in bed in severe pain! This is not my idea of having a fun weekend!

I have done a lot of research on both the Spinal Cord Stimulator and the Pain Pump. The results of my research are that I should know pretty much immediately whether the SCS will help me or not. The SCS does seem to work better for the sciatic type pain, or the pain that runs down the hip into the leg and foot. The SCS may or may not relieve all of my pain. In some people, it took away approximately 40-50% of their pain or changed the intensity from sharp, burning, and intolerable to a dull type of ache that was much easier to live with.

The pain pump got really great reviews by those who were using it as well. They were able to use much less pain medication and got much better relief from their pain by using this method. The main issues I found with both products that could cause problems were issues with infection at the site of implantation and also possible migration of the leads into an area that they were not supposed to be in.

To work properly, the leads have to stay in place. To keep them in place, scar tissue needs to form around them. Physical activity is very limited for at least six weeks after surgery in order to allow the scar tissue to form and to keep the leads from migrating.

The SCS and the Pain Pump both require a hospital stay. The trials were mostly done via outpatient surgery. The main implantations were done and hospital stays ranged from overnight to 3 days. The battery packs were different as well. There are new rechargeable batteries available now that do not require later surgeries to remove and replace the batteries. This was one drawback to the earlier SCS implantation. The old batteries wore out after 12-18 months and required further surgeries to replace the battery.

They even have devices that are partially inside and partially on the outside. It is a lot to take in. I have also read that part of the decision will depend on how much energy or stimulation you will need as well. Certain modules provide more amps than others.

So is your head spinning now? I know that mine was when I first read all of this. However, I do feel better about talking to my pain management physician about the different options now. I know that I do not want to be in the hospital more than overnight. I hate being in the darn hospital!!!! I worked in one for over 10 years I know what can happen in those places!!! LOL!

OK, I will update when I learn more!

Thursday's Child Has Far To Go!

So yesterday I went for my third Sacroiliac Joint Injection. I was not really sweating it due to the fact that the first two had gone pretty well. I was sore afterwards for three to four days but then I felt much better. Well, yesterday for whatever reason, the pain management doctor decided that I needed some extensive injecting done.

Normally they find the right spot, inject and get out. It takes less than 5 minutes from start to finish. Painful and some pressure, well yes. Unbearable, not hardly. Yesterday he kept prodding and prodding with his catheter. I kept feeling him moving and injecting, moving more and injecting some more.

Me being the poor paranoid soul that I am due to the fact that they had yet AGAIN put the wrong procedure on my consent form and we had to get that all straightened out before I could go back to the surgery area, started panicking, thinking is he doing the other procedure? This should not take that long!

So I piped up and said what is going on? Why is this taking so much longer than before? You are doing the SI injection right? He assured me that he was doing the correct procedure but he wanted to give me some extra coverage that he had not done before. He then proceeded to ask me some questions about my symptoms again. I told him yes that my leg did go numb, yes my leg pain was much worse than my back pain. He asked had I had an EMG done?

I said yes but it had been several years ago before my last surgery. He wanted to see the reports. He then tells me that he feels strongly that the hardware in my back is pressing on the sciatic nerve and the SI joint causing inflammation and irritation and the pain that I am experiencing.

OKIE, ummm DOKIE, ummm so where do we go from here? I talked to him about how long I can expect the SI injection to give me relief. He said maybe weeks maybe months, it is different with each person. He then tells me we may need to go in surgically and remove some of my hardware to stop the pressure especially if there is enough nerve involvement to warrant it.

Needless to say, that was NOT what I wanted to or was ready to hear! He then said we might try a spinal cord stimulator instead as I told him I was not keen on surgery atall. I might do the SCS but still not even sure about it. The last time I researched it, they were averaging about 50% positive results. Not great odds in my book for what you have to go through. They do a trial though so if it did not work, at least I would not have to go through the whole surgery.

I have just joined a yahoo group to hopefully talk to others who have had this done. I hope to be able to find out more about the specifics and what types of experiences other people have had with this.

I was totally miserable with my sciatica yesterday The pain in my hip and leg from the procedure was fierce! I really and truly am not a wimp! That was a very very bad experience! I do feel somewhat better today. I still get some horrible twinges down my leg when I get up and walk or after sitting for any length of time. I am limping pretty badly today. I look like Chester from Gunsmoke! I hope that this goes away soon so I can get some relief.

So if you are reading this, some good thoughts for healing right now and this inflammation getting better soon would be sincerely appreciated!

The Mental Toll of Chronic Pain

Sometimes the mental toll of chronic pain can be as bad if not worse than the physical ramifications. While western medicine mainly focuses on treating the body only, there should be more focus on the treatment of the body as a whole. The Chinese and other Eastern cultures have known for thousands of years that you cannot treat the body without treating the mind and the spirit. I feel that modern medicine needs to learn this! Some pain management clinics do have psychologists or other mental health professionals available to their patients but the vast majority in this country do not.

Most Family Practitioners and Internal Medicine Physicians are not equipped to handle any type of acute pain situation very well much less a chronic pain problem. They try and bless them they are the patients first line of defense in this poor maze of jumbled facade of errors that our medical care has become in the U.S. today. However, the statistics show that hardly any of the physicians that are in practice today are even aware of what pain protocols are! If they are ill equipped to treat the physical symptoms, how on Earth do they attempt to start to conquer the emotional and mental problems that chronic pain can cause?

As a chronic pain patient myself, I ask this hoping to get insight for myself and others as I do not have a good answer for this! I really wonder if there is a good answer in our standard of medical care today. If there is I for one do not know about it. I have found some others who are advocates for people who are in chronic pain.

There is a great site called The American Pain Foundation. If you have not visited them in the past, I highly recommend you give them a try. They have chats, a message board that you can get information and advice from Nurse Practitioners and Physicians Assistants who work in Pain Management as well as support from other people who experience chronic pain. They also hold frequent chats with some well known people in the Pain Management world. You can sign up for email alerts for upcoming events or chats there.

Decisions, Decisions!

I decided to take some time off to try to enjoy the holidays.I felt I had spent my whole year spinning my wheels, being miserable with my health problems and the aggravation from the insurance company, and very little to show for it. I wanted to have at least some time without worrying all day every day what was to come next. I resumed my search for treatment including new options in late January, 2006. I was happy to find a couple of things that were available to me that I had not really considered before.

One was surgery in Germany I found out that many other people that were in the same boat as me were mortgaging their houses, emptying out 401K's, their savings, taking out loans, etc to finance their way to Germany to have one of the worlds most renowned spine surgeons do the procedure on them. Dr Rudolph Bertagnoli was one of the first surgeons in the world to do this procedure and has done thousands of them over the past 25 years. He takes patients from all over the world on a cash payment basis. Surgery in Germany is considerably less money than it is here. At the time after the money exchange it came out to be around $35,000 for the surgery, trip and stay there. Unfortunately our finances could not stand the additional burden at the time. Now I think back and wish that maybe we had taken the plunge. Of course hindsight is 20/20. I was considering this but it was last on my list due to the financial burden.

I also found out in the meantime that there was a surgeon here in the US that was performing a hybrid surgery one level fusion and one level ADR that was being approved by insurance companies for the most part. The patient might have to pay for the disc itself which cost $4,000 but this was much better in my eyes than paying $35,000 and being out of the country for 3 weeks.

So I found a patient advocate in Mark with Global Patient Network. He helped me get all my records to Dr Fabian Bitan in New York and I consulted with him later. Dr Bitan told me that at the time he felt I was a candidate for the surgery and that he was willing to do it once I was ready to go ahead with the procedure. I was not able to travel to New York until June as no one could care for my children here for two weeks so I had to wait until they were out of school.

In the meantime, I continued going through pain management. One of the things I found that really helped my chronic pain and sciatica was a radio frequency ablation. This is a procedure that is done under sedation where using guided imagery, the physician goes in and burns certain nerves coming out of the disc spaces. This can stop the pain response from going to the brain. It can take anywhere from 6 months to one year to start to grow back so a person can get long term relief from sciatic pain with this. This helped me for a period of about 10 months before I noticed that type of pain coming back again

However, since there were several components to my pain generators, the pain management physician had to use a combination of treatments in order for me to be able to even function during this time.
Image courtesy of kwest19 at stockxpert.com
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And The Beat Goes On............

By this time, it was late October 2005. I was physically,mentally and emotionally exhausted. I did not know what to do or where to turn. The only options that I had at the time were to give in to the surgeons here and have a 2 level lumbar fusion or pay out of pocket $53,000 to have a 2 level ADR done since insurance would not cover it.
My pain was constant I was seeing a pain management doctor trying one protocol after another. All the injections, pain medications, steroids and aggravation just seemed to be like trying to put a band aid on an arterial bleed. I would get a bit of relief usually temporary but nothing seemed to work for long. In the meantime the chronic back pain and sciatica plus the leg and foot pain was really taxing on me!
I think I got almost as much relief from some alternative therapies such as using moist heat and ice alternating them, neuromuscular and deep tissue massage, acupressure and acupuncture, herbal therapy and MSM. These things were all a big part of my life at that time and again today!
For people who are not familiar with some of the terms above, I am going to explain several of the alternative methods in detail in my blog tomorrow. So stay tuned!

Feeling Like A Hamster On A Wheel

For the next several months, I felt like a hamster on a wheel. I was prescribed one medication after another, tried physical therapy which made my problem worse, and as each week went by, my life changed more and more. Chronic pain takes its toll on your not just physically, but mentally and emotionally as well. Each day I would wake up and wonder if I had the energy to get through the day. I never knew from one day to the next if my back pain would be such that I could not work or take care of my family. To say I was frustrated and angry is an understatement! I had worked in nursing for over 15 years prior to becoming a massage therapist and I was truly saddened to see how medical care had become what I considered a farce in most cases. Doctors want to pat you on the head, tell you it will be OK and hand you a pill, hoping you will not come back! When you do, its lets try this test or that, only to be told there is no hope for you other than major back surgery that you do not want to have. And, who could blame me after my previous experience? Chronic pain management seems to be almost nonexistent here in the U.S. and even the programs that are available are not the best.
I did hours and hours of research to find that there are more people in the same situation. Many suffering with chronic back pain, more than I would have ever dreamed of. I found support groups and information on new treatments that I would have never found if I had not taken a proactive approach to my own medical care!
One of the most important and absolutely fantastic support groups for people with chronic back pain and considering surgery is The ADR Support Group. I met many people there who were just like me. Sick and tired of crappy treatment at the hands of surgeons who either were not knowledgable of the new treatments for spine care or just did not care. Unfortunately, most surgeons seem to have the bedside manner of a toad so if you are looking for someone to be caring, this is not the place to find it!!!
I also found out about a new surgery that looked very promising for those suffering chronic back pain called Artificial Disk Replacement. This type of surgery had been done for over 20 years in Europe with very promising results. The beauty behind this type of surgery was that it required much less recuperation time than a lumbar fusion did. Lumbar fusion is the "standard" here in the US for problems like mine.
ADR as it is called does not place stress on adjacent disc levels that can cause them to herniate or degenerate in the future like fusion can. ADR has been successful according to the studies done in Europe when doing multiple levels. The success rate of fusion goes from 80% at one level to a less than 25% success rate when doing multiple levels.
So, armed with this knowledge I approach my family physician about this new surgery. Luckily for me, her brother was an engineer and had actually worked with the artificial discs development in this country. She told me that if I wanted to pursue this she was OK with it.
I found a surgeon in a well known and reputable spine center in Texas that had worked in clinical studies doing over 100 of these procedures and made an appointment for consultation. Now I am in Tennessee, so we braved a 12 hour car ride to go see this surgeon. Before I went that far I had called my insurance company to be told this procedure was "covered". Otherwise I would have never made the trip!
Image courtesy of redbaron at Stockexchange.com

My journey continues tomorrow!