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RABG
05-02-2014, 09:07 AM
I have had a wound at the base of my spine for 1.5 years. What started as a very small stage 2 wound eventually turned into a stage 4. I intend to write down all that has happened; surgical debredment, PICC lines, hyperbaric chamber, wound care and the treatment of three doctors. It is important to me that my story may help others, reduce fear, find they are not alone.

This wound started shortly after I broke my hip. I did wonderfully, healed well, and followed the doctors instructions. One restrictions was keeping your leg at a certain angle. To get off the sofa I had to "scoot" along the cushions until I could get up. What I was doing wrong was wearing tight jeans and shearing my skin. Several months of this was enough to create a very small wound. I ignored it completely but eventually there was pain at the base of my spine upon getting up. Of course I knew what was happening: the wound was getting larger and there was more pain.

I went to a walk-in clinic where a very skilled wound nurse said it was Stage 3 wound. I was trilled, how crazy is that, This was around January 13. My next post will continue this story.

RABG
05-03-2014, 01:20 PM
Hyperbaric Chambers
In order to heal my Stage 4 wound a team of three doctors worked together.
They are the surgeon, the wound doctor, and the infectious disease doc. The hyperbaric chambers are in the Wound Center, there are 2.
They call going into the chamber as a "dive" because they are much like a scuba diving experience. Each dive lasts 2 hours but there is more time involved; drive to and from Center, getting undressed and dressed, having the APRN look into your ears and check your lungs pre & post dive. It took 4-5 hours every day!
The experience is different for everyone. My ears felt full, needed to pop them frequently, felt cold. You can watch TV, watch a movie or sleep. That is it. No books, cell phone, or talk with anyone.
The hardest thing for me was the no underwear policy. I just hated the feeling of no underpants under the scrubs which is what everyone wears.
Lastly you must be committed. I had 40!

lenvegas
05-04-2014, 08:42 AM
Hi, so did it work?.......Did 40 sessions of compressed oxygen heal your wound?

RABG
05-05-2014, 04:51 AM
Stage 3 to 4 took only 2 months. I found it hard to understand the ramifications of Stage 4. Was it really a big deal? Yes it was. It was time to get serious.
My wound is located just at the base of my spine and presents itself as a hole that I could easily get my finger into right back to bone. What I didn't know was that this wound started to grow. Undermining and tunneling means that the wound doesn't just go straight back but creates pockets and tunnels. When I was told that this was a very serious wound and it would be hard to heal I didn't believe it. That was last March. I had no idea of what was to come.
Nurses measure my wound as if it was a clock with a Q-tip. They start with the depth and then systematically go around measuring the tunnels and the undermining. Those measurements tell us where the wound is getting better or not. Mine did not get better but stalled. The weeks went by with such distress, no bandaging would stay in the wound. Finally in late August the APRN at the wound center told me that I would have to see a surgeon so I did. Dr. S didn't mince words! Surgical debredment needed to be done, maybe twice or even 3 x.
To complicate the situation they found MRSA; an antibiotic was started, Dr. S opened the wound, took all the infected tissue and scrapped the bone. All this in hope that the wound would now heal. It didn't.

RABG
05-05-2014, 06:08 AM
[QUOTE=lenvegas;5287417]Hi, so did it work?.......Did 40 sessions of compressed oxygen heal your wound?[/QUOTE

No. Did it give me a boost so the the wound could heal, probably.
As I write out what has happened over the last 1 1/2 years I realize how much has been tried and failed. There have been successes as well but at a snails pace
I wrote today about my Stage 3-4 wound.
My goal in this project is much like a journal writing. I hope it might help people who are might be having or expecting similar issues.
Thank you for interest.

lenvegas
05-05-2014, 01:12 PM
I hope you wound heals up fast and you can put this behind you. Keep us posted of your progress.......One piece of advice.....if you are taking heavy antibiotics, it's a good idea to take probiotics to keep your bodys' natural flora in check so you do not get any yeast problem......take care

rosequartz
05-05-2014, 01:46 PM
wow I'm sorry you're dealing with all this......are you sure it's not a pilonidal cyst?

RABG
05-06-2014, 04:36 AM
wow I'm sorry you're dealing with all this......are you sure it's not a pilonidal cyst?

Thank you for your comments. I am sure it is not a pilonidal cyst but you are right, this wound is similar. The main difference is you can remove the cyst and it heals from the bottom up. I appreciate your interest as there is more to tell.

rosequartz
05-06-2014, 06:28 AM
Thank you for your comments. I am sure it is not a pilonidal cyst but you are right, this wound is similar. The main difference is you can remove the cyst and it heals from the bottom up. I appreciate your interest as there is more to tell.

well we are here to listen.....
I have also heard of people having good luck with using honey to heal a wound....although I think yours may be much more complicated!
:angel:

RABG
05-06-2014, 08:54 AM
The Wound Vac
Several weeks after the surgical debredment it was time to use the wound vac. My two visiting nurses came to the house to place it into the wound. It is a real process taking about an hour and is difficult for me to explain.
The basics are a motor is attached to tubing that goes into the wound and continually pulls out secretions from the wound.
The struggle with the wound vac is getting the motor to do it's job noiselessly. A seal between the vac and my skin was almost impossible to achieve but Dr. S. Did it. Now I was attached to the vac 24/7.. I could unattached myself for a shower, wonderful! The motor came with a nice looking carrying case. That was great because I had to carry it everywhere.
The visiting nurses came in 3x a week to change tubing, dressings and canisters, This went on for 4 weeks with little success. This is getting a bit depressing but I have to push on or give up. I haven't given up.

A funny story that I will always remember. The first night after the Vac was in place the motor started to beep. It is 1 am and I can't stop it. I had to call the company for help. A young man tries to walk me through a way to stop the endless beeping. It took an hour but by 2am I am done.

It is now in late December and a meeting is scheduled with Dr. S. and Dr. W.
(Wound doctor). This meeting is to come up with a plan to deal with the MRSA, and wound stalling.

I will address the outcome of that meeting later.

This

RABG
05-08-2014, 06:03 AM
Doctors Fighting
I have always assumed that doctors got along well, at least in public. What happened around last Christmas completely destroyed that assumption.
Last Years holiday's were marred by a nurses strike that caused problems throughout the hospital. What was supposed to be a 2 day strike turned into many weeks of confusion and rising tempers.
The plan was to get Dr. S and Dr. W together with my husband and me. We were scheduled to meet at 3pm at the wound center and asses the situation. The wound stalled again, there was heavy amount of MRSA in the wound, and Dr. S had removed the wound vac.
All the players were in the wound center except Dr. S. Dr. W came into my treatment room already in a hostile mood. He then preceded to have what was later called "a moment". He was angry that the vac was gone, angry at Dr. S for being a no-show, angry that the wound has stalled and he failed to catch it yet again.
What preceded was awful. Dr. S could not be reached by cell, text, or pager. He looked at the computer screen and pronounced that everything looked great ( exact word). When I disagreed he looked again at the screen and saw that the wound had not gotten any better. He looked into the wound, pronounced that it was worse, and he was going to (ramp up) the wound vac. The wound vac is not there, it had been removed, remember? That did it! He then left the room, slamming the door behind him, and was gone for 5 mins.
This went on for close to 30 minutes ending with me being told I was a very unpleasant person, always had been, and then left the room for good.
I will continue this tomorrow.

rosequartz
05-08-2014, 06:28 AM
wow there is no excuse for his behavior! I'm sorry on top of all you're dealing with, you really don't need a doctor throwing a tantrum! Is there another doctor you could switch to?

RABG
05-08-2014, 06:50 AM
wow there is no excuse for his behavior! I'm sorry on top of all you're dealing with, you really don't need a doctor throwing a tantrum! Is there another doctor you could switch to?

Thank you again for reading my story, it is so kind of you!
About the Medihoney. It is used in certain wounds. It is exactly like edible honey, looks, smells, sticky. I never tasted it! It was used in another wound I had several years ago. That wound was much less serious and it did work.

About the tantrum, it isn't over yet. I had to stop writing because It is hard to do; I will finish it tomorrow. Finding wound doctors is not easily done where I live. If you want read part 2 and you will get a better answer.

RABG
05-09-2014, 08:03 AM
Doctors Fighting cont.
So many strange things happened in a short time but the following isolate incidents. My husband was in the room with me, thank goodness as well as a nurse. During Dr. W. rant he picked up several files. He holds up one and says " there are too many cooks in the kitchen ". Do you still want to see him" meaning Dr. S. I replied OK.
With that response he walked to the computer and types in "patient wants to see Dr. S. I am dismissing her from this practice as she requested"
I am laying down on a stretcher with nothing on below my waist except a sheet. The nurse is sitting down next to my wound ready to dress it (she already has taken the vital measurements ). We cannot see the computer screen at all but my husband can. He reads what was typed in and tells Dr. W. "I take issue with what you just entered, she didn't request to be dismissed, but to continue seeing Dr. S. They exchanged a few words and Dr. W. changes what he typed to "patient wishes to continue to see both Dr. S and Dr. W"
We leave the treatment room and go directly to the manager. We tell her what just happened and inform her we are going to see Dr. S, now
We do go and saw Dr. S to find out what just happened. He admits he was in the wrong, that he just talked with Dr.W, and they are on the same page. The plan is this 1) repeat the surgical debredment 2) put in a PICC line and start Vancomycin 3) start hyperbaric treatment 4) a weight gain for my part.
These are suppose to happen at the same time, within the few weeks.
It is time to bring in Dr. IF infectious disease. He will manage the entire antibiotic regimen
We are now into 2014. The surgical debredment is done at the end of January, PICC line is in, hyperbaric is started, and I am trying to gain weight.
What about Dr. W. I will not allow him into the treatment room by himself, there has to be another doctor present. I am ever grateful to the APRN for taking me on.
What has been learned from what happened in early January? Bring someone with you for every visit. If my husband had not been with me I would have been discharged from the wound center. That, on the surface looks like a good thing but it would have put me in a terrible position, mostly for hyperbaric visits.
I am building up to the present day. I'll get there

rosequartz
05-09-2014, 08:16 AM
you are absolutely correct about bringing someone with you.....you need an advocate. That's why I always go with my mom to the doctor......or hospital,
in case she misses something, it's possible it might not slip by me....a 2nd set of eyes and ears never hurt!

RABG
05-10-2014, 02:19 PM
Thank you rosequartz for your reply. In the incident concerning me it was the eyes. Isn't that something!

RABG
05-12-2014, 03:51 AM
I am going to change the order of my posts and bring the story to today. I have a visit with Dr. S and APRN this morning and I am apprehensive. I feel that the undermining hasn't changed. I know this is so because of the pain. Any pressure on it causes pain. I'll write the result of this appointment later then go back to the story.

gmak
05-12-2014, 07:50 AM
Hi Rabg, Im sorry that you have been through such an ordeal & sad to hear its causing pain when you touch the wound, is that a good sign that the nerves & circulation are better & is the pain supposed to subside with a little more time?! Hope your dr appt goes very well without anymore incidents & praying that everything will workout perfectly for you. Your husband is going with you to the dr?

RABG
05-12-2014, 01:06 PM
I am at the point where we start the plan, the very end of January. I will have the second debredment done in the Same Day portion of the hospital. I am scheduled for a specific time but as soon as I walk into the room I know something has changed. The PICC line is going back in. I just had it removed by Dr. IF, but it is going back in for another 6 weeks of Vancomycin.
Putting in a PICC line is a fairly lengthy procedure, about an hour and for me it is uncomfortable.
The surgical procedure goes well but I am left with a much larger wound requiring a lot of packing. Dr. S. comes in and tells me to start hyperbaric treatments Monday only 2 days away. He expects me to drive to the wound center, over 30 minutes away on a debreded bottom. Okay, I'll give it a try.
So off I go to the center to bring in the last of the "plan".
In order for me to go into the chamber either a doctor, Dr. W. in this case, or the APRN must pass you, look into your ears, listens to your lungs.
All goes well considering I must interact with Dr. W occasionally, the APRN and I join together to send me into chamber. However---
The APRN slips on ice and severally fractures her wrist. Oh No, she will be out for 8 weeks. What am I going to do.
I will finish this tomorrow.

RABG
05-13-2014, 11:51 AM
Hi gmak
Thank you for reading the long story. It isn't yet up to the present although I stepped out of time for yesterday's visit.
My husband goes with me for every doctors visit. This was not the case last year though. I made this wound to be a minor one. He wasn't ready to accept the nature of this wound and wasn't until October.
The result of the vist was to try Oasis. I have never heard of this but have done some reading. This a skin substitute and is used when a wound has yet again stalled. They will start it in about 10 days.
The pain has been a constant for the last year. I sit on a gel chusion and that helps. I also see an excellent pain physician. If there is no pressure on the wound it does't hurt.
Thank you again for your lovely comments.

RABG
05-15-2014, 04:44 AM
I am now faced with a real dilemma. Should I stay at this wound center or seek out another. At the heart of the problem is the hyperbaric chamber. If I stay I keep the same nurses and chamber. The doctor is another matter, we decided that under no circumstance would I let Dr. W examine me. I had no problem however allowing him to pass me into the chamber.
How to solve the Dr. problem. I need a physician to look at and evaluate the wound every 2-3 weeks. Would Dr. S agree to see me at the wound center? Yes he would.
If I decided to go elsewhere I would have to go through insurance authorization, find a new facility and doctor, and be willing to drive a further distance in the winter.
I completed the 40 sessions without incidence.