My story after all these years/ update/02/03/18 back surgery yesterday

[Alchemist]

Hi Bob,

Quite right you take what you can get.  Pain control is often very incremental.  I spent 16+ years of very out of control pain, body wide.  "Controlled" and "tolerable" are the hopefully realistic goals in pain management. 

Pain perception is not well understood.  Best of luck for both of you. 

[hammer]

On September 11th I had 7 nerves burnt that serve or work with the SI joint! I've been waiting to update my story to see if it was going to do any good or not. The procedure itself was not a long one but it did hurt! The doctor first numbs the area and if you have ever had numbing injections you know that in itself hurts or stings. That had to be injected little by little all the way down to the bone in 7 places.

Then what I believed what was an electrode was placed in all the way down to the bone, and I say this because I had said something to the doctor and he said that he hit the bone! He then would apply a little voltage the see where I was feeling it to make sure he was it the right area, and if he was then would proceed to burn that nerve. I couldn't feel the burning, however he said that it may get warm.

It took some time to just get feeling better from the procedure itself before I could start to even know if it was helping at all. Once the procedure pain was gone I found that it only took care of 1 (one) pain that I was having from the SI joint. That was the feeling of an oversized alligator clip biting deep on my butt!

Funny thing is after Debbie my wife fell down the stairs and dislocated her SI joint she had that same pain! PT has been able to help her, thank God!

Well, moving right along. I still have small of the back pain, hip pain, and pain that runs down my left leg that contributes to my near falls that my diabetic neuropathy does a good enough job on its own!

Yesterday I saw my back doctor and I had a feeling he may still want to blame this on the SI joint and if he did I was going to invite him to step outside the "box" and do some thinking there about other possibilities! To my surprise he already was outside the box with plans for a MRI and a series of xray's of the spine and lumbar! He's the doctor that did the 9 hour of back fusion surgery at the U of M, in 2009 and diagnose me with degenerative disc disorder then. He is also my doctor at the VA, and I do trust him.

Maybe in time there will come a day that I can at least be able to sit or lay down and be comfortable, I know I will never be pain free, it would just be nice to have a way to be comfortable! I know I'm not they only one that lives with this problem here on the forum, there are a few of you that know exactly what I mean!

Bob

[Alchemist]

Hi Bob,

So, on to the next chapter.  It's too bad that the gains were not higher from this last procedure.  Hang in there and keep on swinging.  Getting pains under control can be most difficult and complicated.  I hope you achieve that.  Pain free is not realistically achievable.  However, getting so that some positions are comfortable with manageable pain can make all the difference.  Have you ever tried a flotation tank? (Samadhi brand) That helped me tremendously when my pain was at it's worst over a 10 year period.  Also the ReBuilder (I'm about to buy my third one) I have found helpful, much more so than the usual TENS unit.

It was most excellent having 7 weeks at our RV site this past summer.  Now it's back to household outdoor chores for the next month.  Good luck to both of you. 

[hammer]

I always make a list before we get to this point of the year things that "need" to get done before deer hunting. I always want to have two weeks of rest before deer hunting, but until this year I've never been able to get that done! It helped that I gave away several thousands of dollars worth of radio repeater equipment that was taking up a ton of space in my garage and the addition on the back, plus I took two pickup truck loads to the dump this year of all that stuff I was going to use someday! Last year I had a scrapper take a bunch of stuff, that I couldn't pickup myself anymore.

My garage is 41x24 with the addition, and you could hardly walk in the addition area, and in the front I had room for the truck and the riding toys for what ever season it is, the others are "packed" in back! The repeater equipment was donated to me by all the law enforcement agencies that I did some vollunteer radio work for so I didn't loose anything on that, but gained my space. And admitting that I'm never going to use that other stuff someday is a giant step forward in accepting my disabilities!

As for floatations tank, if the pool counts, then yes! I was a driver in the Navy and really loved to swim, but I found out that just being in the pool leaves me in a lot of pain. I tried it for exercise too, just for walking to see if I could loose weight that way, but as I said, the resistance was hard on the neuropathy. I did find out that my swimming ability was very poor after all the years of dealing with the health issues as well!

[Alchemist]

Hi Bob,

A floatation tank has approximately 1.25 density Epsom salt solution allowing every body to float high.  The temperature of the water can be adjusted very precisely in the 93.00-95.00 degree range on 0.01 F deg increments.  Also the top is heated for no condensation or can be turned off and there is a very slight air circulation and fresh air system.  It is like a waterbed with no skin on top.  Ones' body is perfectly and evenly supported.  Because of my anatomy, I have to use a small bubble pack pillow to keep my head at the right level.

The tank was probably the only thing that got me through a terrible 10+ year period when I was only able to sleep a few hours per night.  I typically spent 2-4 hours at the beginning of each night in the tank and got totally relaxed and then would shower off and go to bed for a few hours of sleep.  While the literature speaks of "floatation state" I would speak more of a form of samadhi.  It is certainly a meditative state.  I found the only relief I had was being in the tank. 

We have the task of emptying out 2 houses.  Would you like some old computer collections?  We have between us 50-60 years in the computer programming and consulting business and I have no idea how many old monitors, computers, tape drives, optical disks and oddball hardware occupies significant areas of the houses.  At one point we were supporting customers on 3 or 4 generations of hardware and several different development systems.

Right now my neurological pain is on the increase again after a decade of decreasing pain.  I hope you have some good success at getting the pain managed.   I've spent too long in the healthcare system.  It has cost me my belief in medical research methods and the ability for doctors to deal with many of the things affecting us. What would it be like to have something like a 90% probability of success.  Hell, 50% would be pretty good. The longer I've been at this the lower my expectations.  I don't think I would well as a doc who is only slowing down the disease or trying to alleviate some of the misery.  As a programmer-analyst I have to believe a solution is possible for what I take on. 

[hammer]

I have found great peace using meditation with the help of music! I have several thousand songs in my phone and when I'm at my worse I put on a very good pair of head phones and get lost in the music. I have enough music that I can listen for over a week without hearing the same song twice unless I program it to hear them again. Music has always been an escape for me, but only when I'm in meditation with head phones on and into the music. Other then that I hardly turn the radio on even when driving.

[Alchemist]

Hi Bob,

How is it going? Is the pain getting under control?  When my pain is high my mood is low.  I hope you don't have that coupling.  Are you at a University Pain Clinic?  I might be able to check with my docs and find out who they think is the best pain doc in your area or any of the docs that have been through their fellowship in pain medicine.  I think they do a good job.

[hammer]

I don't go to the university anymore, I'm at the VA. I'm still waiting to hear about the results of my MRI and series of back X-rays that I had done! I finally got an appointment made yesterday for the 8th of December.

I do have a great relationship with a chiropractor that was doing my acupuncture at the VA before I had the nerve burning done. That was helping in some degree, but I do have a co-pay at the VA of $50.00 so each treatment was $50.00 so eventhough I have no monthly premiums, just co-pay, they still add up! My co-pay for RX is $9.00.

You are right about pain levels going up causing mood swings as well! I fight them as well as I can. Debbie says I do a good job at it!

Thanks for asking, I hope all is going well for you!

Bob

[Alchemist]

Hi Bob,

My doctor of the past 11 years of healing is retiring from office practice to a hospital only practice. You understand the anxiety about this for those of us so dependent upon correct helpful healthcare.

For the 20 terrible years my chiropractor was more helpful in controlling a lot of the pain than anybody else.  After the right vitamins did their work my muscles normalized and stopped twisting my spine out of line.  After the car crash a person could see and feel the "crease" in my spine sticking out and I was almost 2 inches shorter.  It also caused all sorts of pain.  When somebody convinced me to finally try a chiropractor I did.  In 3 years of 3 days a week adjustments, which was done on a single negotiated monthly charge basis, that "crease disappeared, I got my height back and the pain was very reduced.

I've made a no-copay "wellness" exam appt (benefit in insurance plan)to use as a get acquainted visit to see if we can agree to have my prescriptions continued and monitored and that changes will be evolutionary, not revolutionary.  I hope I don't have to go through dozens of docs this time.


My partner has her own set of wear and tear damage, injuries and pain issues and a 2 level fusion in her neck.  Between us sometimes we have a fully functional arm and hand, and sometimes we don't.

We try to eat well.  Neither of us can tolerate many packaged foods for various reasons.  I make an excellent baked chicken with herbs from the garden  There are days neither of us really feels up to cooking. Last night we made roasted herbal chicken,  brown rice and squash soup.  We will be eating that and salads for several more days.  So making sure of good leftovers has become important.  There was a 7 year period I had to give up my French chefs knife.  That is going to happen again.  I very much dislike loosing parts of my life.

I hope both of you can keep things good and not let the pain and disability tear your lives apart.

[hammer]

You are very right about eating! Debbie and I don't like to eat "prepared" foods either! We both like home cooking with fresh food and at one time most was home grown, but when I had to stop working and Debbie went to work our garden stop producing! Not that we didn't keep the garden, it stopped growing!

We aren't ones to eat fast foods either. We are sit down eat right and take care of your insides are important kind of people. Debbie is also one to always to remind everyone to enjoy in moderation as well! I guess that's why she can still fit in the same clothes she wore in middle school!

I went deer hunting last Tuesday with my older brother who is just 3.5 years my senior. He did most of the camp set up because of my limitations, but still in the end we packed up Wednesday morning and went home as I was to beat to even get on my ATV and go out, and the temperature had dropped down with the windchill cold enough that he was fine with calling it quits! My back had got so sore that I couldn't stand up straight, so with tears in my eyes I did what I could to help him pack up.

We decided that from now on we will stay in a motel/hotel and then I just need to unload my ATV as that is my legs when we hunt and we need to bring the warm clothes, no food, tent, slipping bags and all the other stuff!

Sad part about this is I look forward to this all year and prepare for it as well! This is my biggest thing I do for myself every year and I don't want to loose it or give it up.

And you know what makes this all so hard? I have 46H boobs, lol! Really I don't give a damn about the boobs!

[hammer]

For several months I have had sores on my butt (I'm not one to run to the doctor right away) and Debbie and I thought that they might be pressure sores, (bed sores) being that I spend so much time on my butt being unable to walk far or stand long. We tried to heal them every way we could with no luck!

On Tuesday I went to my primary care doctor who thinks they are Psoriasis! After some research we agree and think it might be Fexural or Inverse Psoriasis! My doc is going to send me to dermatology to confirm and help, but from what I read and see on TV I don't like the sounds of the medications for this crap!

On a positive note! When I first started at the VA the doctor who did my intake told me that I had to stop wearing my support hose because being a diabetic it was not good for me! That did confuse me some, as my old doc told me to, and he was a Endorinologist, this doc also was a Endorinologist. I did some research and found both that I could and that I shouldn't wear them!

Tuesday my primary tested my blood flow in my legs and said that I could wear them and ordered new ones for me! The support hose help both my legs and knees! My legs feel heavy and fatigued and the knees just hurt and are weak! The hose do exactly what their name say, support! And when I can't put them up, they don't swell up with the hose on!

I'd like to wish everyone a safe and happy Thanksgiving!

Bob

[hammer]

I saw my back doctors intern yesterday and got the results of my MRI and series of back X-rays. First thing he said was that I'm not an easy case! (No shit, I'm living it) He also asked if I ever fractured my back as there was evidence that I did, I've had many great falls and accidents that could have done serious damage, however I was always able to walk away from them.

He then told me the things I all ready know from my previous back surgeries like I have arthritis. He showed me that below the fussion that I already have on the right side the spacing between the vertebrae is normal but on the left side it is crushed. This is the side that I have the pain on of course, in the low back and down the left leg.

The plan of action will be injection, pain clinic and as a last resort surgery. This type of surgery is done by going in from the side and fill in the space to bring it up to normal spacing and fuse it. It's a hard surgery in his own words so we will try everything else first! I'll do the surgery if needed but I'll try everything we can before hand, as this will be surgery number 8, and I'm not looking forward to another, but I hate the pain!

On a positive note! When I saw my primary last time about the sores on my butt, we stopped one of my diabetic medications and by doing so the sores on my butt also healed up! I haven't even been to dermatology yet, so I'll be canceling that appointment! The medication was Glucophage (Metforman) that I've been on for at least 16 or more years, go figure.

[Alchemist]

I saw my back doctors intern yesterday and got the results of my MRI and series of back X-rays. First thing he said was that I'm not an easy case! (No shit, I'm living it) He also asked if I ever fractured my back as there was evidence that I did, I've had many great falls and accidents that could have done serious damage, however I was always able to walk away from them.

He then told me the things I all ready know from my previous back surgeries like I have arthritis. He showed me that below the fussion that I already have on the right side the spacing between the vertebrae is normal but on the left side it is crushed. This is the side that I have the pain on of course, in the low back and down the left leg.

The plan of action will be injection, pain clinic and as a last resort surgery. This type of surgery is done by going in from the side and fill in the space to bring it up to normal spacing and fuse it. It's a hard surgery in his own words so we will try everything else first! I'll do the surgery if needed but I'll try everything we can before hand, as this will be surgery number 8, and I'm not looking forward to another, but I hate the pain!

On a positive note! When I saw my primary last time about the sores on my butt, we stopped one of my diabetic medications and by doing so the sores on my butt also healed up! I haven't even been to dermatology yet, so I'll be canceling that appointment! The medication was Glucophage (Metforman) that I've been on for at least 16 or more years, go figure.

Hi Bob,

Metaformin causes B12 (MeCbl) deficiencies and maybe folate too as a consequence.  Lack of either or both can cause all sorts of lesions because new cells can't be made fast enough in the areas getting the most wear and tear because of the lack.  No kidding.  Lack of MeCbl also can increase chronic pain considerably.  Really.  Been there done that except it wasn't caused as a side effect of one of many drugs.  Good luck.

[hammer]

Some very good info Alchemist, thank you!

It fits why my butt is healed up with stopping the medication then. It was a pain in the $&@ having it hurt and bleed and continue to peel off. I never knew I had that many layers of skin! It's funny it took so long to affect me like that!

[igotum]

Hang in there Bob. Maybe you can get relief soon.