Grounded For How Long???

[ArcticDiver]

I posted recently my story about being "Grounded Again". Now I have the sequel. Yesterday I started my PT with an accupunture session. First time and it was nothing like what I was expecting. In fact I was impressed and am scheduled for more sessions plus some pool work.

But then the "fun" started. On the way out the therapist gave me a copy of my recent MRI and told me to read it when I had a chance. I was enroute to closing on the sale of our upriver property so I tucked it in my briefcase. (Side note: We have been blessed to live the Alaskan Dream while not going broke doing it. But up river is not wilderness any more and it is time to pass the place on.).

When we got back from closiing I got a call from my personal provider about my "scary" MRI. It seems I have multi-level lumbar spinal stenosis that is rated from mild to severe. Although the fall kicked off the immediate sysmptoms that have me with pain and mobility issues most likely it is just a case of finally progressing to the point it is seriously affecting my life, not just diving, my life. Now what? Is this That Life Changing Event?

Frankly, I don't know anyone who is in my age and activity bracket so I don't have a good reference source. How long to try PT before saying enough is enough and going for surgery? Even the idea of surgery is mixed. Not a lot of people who have this kind of thing even desire an active life.

Anyway, yesterday I was planning a dive trip and a solo wilderness exploration into an area I had limited knowledge of. Today I am filled with questions about just having mobility and no good information sources about what matters.

[John Rawlings]

Oh, man! That's terrible news! Hopefully there's some better news for you on the horizon.

Get a second opinion...I've had several occasions where "better news" was just a matter of having a differnt doc take a look at things.

May good fortune follow you everywhere!

- John

[ktb]

Go to a VERY good back doctor who is committed to helping you STAY active. My mother has spinal stenosis among other things, has had 3 (successful) back surgeries, and still dives. Granted, she doesn't shore dive because she can't lug gear for long periods, but she is still *carefully* active.

[LCF]

It's been my experience that the biggest determinant of functional status with any treatment is the patient's desire to function. It may well be that no treatment, including surgery, is going to return you to a completely asymptomatic state (that's the fun part of getting older, which is not for the faint of heart). But if you WANT to function, you will figure out how to do it -- it may take continued treatment, it may take some medication, it may take exercise, and it may take a bit of tooth-gritting.

Most of the patients that I see who have become disabled with chronic pain didn't have a lot of reason to want to be anything else. Without motivation, all treatments fail.

[oldsalt]

You have advice and encouragement from people much more qualified than me. I only know about medicine from the patient's point of view. From that experience, I encourage you to be as active and as aggressive in pursuing solutions as possible. We both know that the day will come that we make our last dive, but it need not be soon. I have tremendous respect for medical professionals, I live because of them. Yet dealing with the human machine is so complicated, that they can often be wrong. I was left for dead in Vietnam. They were wrong about that. When I emerged from surgery I was told I would never again climb, dive, or run. That was wrong too. In each of the dozen or surgeries I have had came with the possibility of a severe change in life. I have learned that in the whole range of outcomes, the worst case is unlikely. In the words of Red Green, "I'm pulling for you."

[ArcticDiver]

Thank y'all for your encouragement. Right now is a very emotionally sensitive time. Living either full time or part time remotely, especially when we cleared the land and built the dream is more than property possession. it is part of our identity. Coping with all this together is challenging.

I will not give up. I was told today that probably one, if not my biggest, challenge, will be to get the medical community to treat me as ME, and not the usual gray headed patient. It seems the "standard" for people in my age group is to be relatively pain free and able to get arround the house with minimal assistance. That is way below what I've been doing and what I want again. Any tips on how to successfully do that wiithout adverse staff reaction will be gratefully accepted.

Right now I'm increasing the pain med dose but that can only be temporary and I have a referal to a Pain Clinic. I have an appointment next week with my PCM. She, in the past, before I had any significant problems, has indicated I was way too active for a person of my age and I needed to slow down. I can only imagine what she is going to say now. One indication was that she thought pool exercise was too strenuous even though the PT who knows me thinks that, done right, is the best way to go for now. So, I'm hopeful that with y'all's help I will be able to get her on board to restoration of MY life instead of what her concept of what my life ought to be.

I've been blessed at being able to live not just one dream; but several. My gut says it isn't time to stop dreaming or doing.

[ArcticDiver]

It's been my experience that the biggest determinant of functional status with any treatment is the patient's desire to function. It may well be that no treatment, including surgery, is going to return you to a completely asymptomatic state (that's the fun part of getting older, which is not for the faint of heart). But if you WANT to function, you will figure out how to do it -- it may take continued treatment, it may take some medication, it may take exercise, and it may take a bit of tooth-gritting.

Most of the patients that I see who have become disabled with chronic pain didn't have a lot of reason to want to be anything else. Without motivation, all treatments fail.

Lynne, you and I are on the same page. It has always disappointed me that a patient I've had to deal with approached the situation with the "fix me but don't ask me to do anything" attitude.

But I've enountered one exception that I really haven't figured out how to deal with. I have been amazed at how many elders are encouraged to settle for less than what they could do. For example: Right after my fall and before testing and assessment, when I told the staff that out of caution I'd held my bicycle mileage down to a short 15 miles instead of my usual 25-30 or more I was told I was riding too much. Not too much because of my injury. Too much because that is too far for a person of my age. When I said most of the people for whom cycling is a sport routinely do 3-4 hour rides and do so at a 3000 mile per year pace(I rode a bit over 1700 miles last summer snow off to snow on) I was told that was for younger people.

So I see one of my challenges getting these people on my side so I can do all the mind and body will allow.

[Joshua Smith]

It's been my experience that the biggest determinant of functional status with any treatment is the patient's desire to function. It may well be that no treatment, including surgery, is going to return you to a completely asymptomatic state (that's the fun part of getting older, which is not for the faint of heart). But if you WANT to function, you will figure out how to do it -- it may take continued treatment, it may take some medication, it may take exercise, and it may take a bit of tooth-gritting.

Most of the patients that I see who have become disabled with chronic pain didn't have a lot of reason to want to be anything else. Without motivation, all treatments fail.

That's really good, Lynne. I think a lot of people just want doctors to give them a pill to make it better, whatever "it" is.

[LCF]

Fred, I don't know what to say to you . . . I spent some time with a personal trainer a year or so ago. They tested me, and I maxed out on everything but cardiovascular fitness. After a month, I asked the person I was working with, "Be honest with me -- How am I doing for someone my age?" And she looked at me with her jaw dropped and said, "You have GOT to be kidding!" And I'm not young, not strong, and not very fit.

Our society expects older people to decline. Most do. Those of us who are trying not to, all too often encounter the, "If it hurts, stop doing it," attitude. I would highly suggest finding a sports medicine specialist. They at least understand people who are TRYING to get back to a high level of function.

[ArcticDiver]

Thanks Lynne. It is comforting to know I'm not the only one getting this type of treatment. At the same time it is scary that you get it too.

Just because of our geographic location we have a pretty good selection of specialties despite our small town size. But that small size also means we don't have many practioners in each specialty. In fact one of the people I've had a problem with in the past is a sports medicine orthopod. His comment was that I had exceeded all natural body design expectations and needed to accept I was now old and to act accordingly.

Still, I'm fast losing fitness due to inactivity so time is important. I think with your encouragement I'm going to be pretty assertive, not aggresssive, assertive during my meeting with my PCM. She has a few months left here before going back to the war and has been there before so maybe I can get her attention and she, in turn, can get me on the activity track, not just the paiin alleviation track.

If you, or anyone else for that matter, has any other input please shout it out. I'm beginning to see there might be an opportunity to change some minds and maybe help some others.

[Dusty2]

My Dad is 83 and still more active than most people my age. Not to mention me. He still dives with me by his side but has to make allowances due to his physical problems. He sez he will keep diving as long as I put up with him. Mom at 86 fell and split her kneecap in half a year and a half ago and they said at her age she might never recover full use of that leg but she is out walking every day and doing quite well.

Attitude is on your side. If you think you can then you probably can. Just set small goals and when you get there smile for a day then set the next goal. If you aim to high you will eventually give up. So as they say small moves and achievable goals lead to success.

[RoxnDox]

I posted recently my story about being "Grounded Again". Now I have the sequel. Yesterday I started my PT with an accupunture session. First time and it was nothing like what I was expecting. In fact I was impressed and am scheduled for more sessions plus some pool work.

But then the "fun" started. On the way out the therapist gave me a copy of my recent MRI and told me to read it when I had a chance. I was enroute to closing on the sale of our upriver property so I tucked it in my briefcase. (Side note: We have been blessed to live the Alaskan Dream while not going broke doing it. But up river is not wilderness any more and it is time to pass the place on.).

When we got back from closiing I got a call from my personal provider about my "scary" MRI. It seems I have multi-level lumbar spinal stenosis that is rated from mild to severe. Although the fall kicked off the immediate sysmptoms that have me with pain and mobility issues most likely it is just a case of finally progressing to the point it is seriously affecting my life, not just diving, my life. Now what? Is this That Life Changing Event?

Frankly, I don't know anyone who is in my age and activity bracket so I don't have a good reference source. How long to try PT before saying enough is enough and going for surgery? Even the idea of surgery is mixed. Not a lot of people who have this kind of thing even desire an active life.

Anyway, yesterday I was planning a dive trip and a solo wilderness exploration into an area I had limited knowledge of. Today I am filled with questions about just having mobility and no good information sources about what matters.

Ouch! Maybe I can provide you with a reference point... I am 50, a computer jockey so I sit on my butt most of the time, moderately good shape overall but not an exerciser type. We moved from Nebraska back home to Washington last fall, and after the "fun" of hauling our stuff around, packing, unpacking, etc, I reached up to get something off a shelf in the closet and got a sudden sharp pain in the shoulder. Tried the usual fixes (hot packs, cold packs, Motrin, etc) with no luck. I was also getting streaks of fiery nerve pain shooting down the arm into my fingertips. After several visits to the doctor (one of my wife's Family Practice partners), we had run thru the gamut of PT (very little help), acupuncture (much more effective), stronger drugs (some help but not curing it). A nerve study showed severe carpal tunnel problems, but the pain was up in the shoulder, so the next step was the MRI. I got the same stenosis as you :angry: . We ended up at the neurosurgeon who gave a choice of trying some injections to reduce the swelling of the nerve to provide relief for awhile, or surgery to enlarge the opening in the vertebrae for permanent relief. I chose the surgery.

I went in and had the surgery a couple of days after Christmas (with the carpal tunnel fix done at the same time). Spent several months doing PT to regain flexibility and strength in the neck, arm, and hand. The hand is still not quite as strong as the left, but it's adequate and still improving. A little numbness/nerve pain left in the two fingers most affected byt he carpal tunnel release, but that's improving too (they said it could take a year or so to fade). The most important thing is that the arm/shoulder/neck pain is *GONE* (thank ${DEITY} for that!!!!!!!!!).

I was able to get into adequate shape to start my dive class in May, and didn't have any issues other than having to get my doc to certify I was OK to get wet.

So I guess the point is that the stenosis can be fixed, and the doc should be willing to work with you to get a neuro consultation and find a solution that will let you continue. I dunno if you're older or younger than me (as one of the new guys around here) but I meet lots of doctors (what with the wife bein' one of them), and most of them are pretty good about working with patients that want to continue active lives. Some patients, they just can't figure out where pain is coming from and those are hard to deal with, but in your case it sounds pretty straight-forward. Be proactive when you go see the doc, too. Tell them what your desires are, and make sure they are willing to help get you there. If you accept a passive role, you might get treated one direction (the easy way). If you have specific goals (continue diving and be back in the water in 4 months, say), then you might get different treatment plans.

Good luck,

Jim

[Dusty2]

Ouch! Maybe I can provide you with a reference point... I am 50, a computer jockey so I sit on my butt most of the time, moderately good shape overall but not an exerciser type. I dunno if you're older or younger than me

He is way older than you He calls me youngun and I'm 68!

[ArcticDiver]

Thanks to all. You have affirmed my plan to be very assertive with my physicians and the staff and not be perceived as being an aggressive PITA. Much of the staff is very experienced in dealing with the trauma from IEDs and other consequences of war. If they don't have the skill personally they know someone who does. The trick will be to figure out how to convince them I am motivated to continue a life, not just existence, and thus motivate them to make all the resources available.

I will learn more when I have my follow up appointment on Tuesday. The first encouragement that they might even be receptive to ME treatment came yesterday late afternoon when I needed more pain med(Vicodin and Valium suck but work) and the staff nurses actually returned my telephone call and I had my drugs in an hour.

Up to that point, as I have described, I was just dismissed as an old guy who had been stupid and overdone things I shouldn't have been doing in the first place. I suspect the Physical Therapist who knows me has gone to bat for me. I'll know for sure Tuesday.

I'm thinking also that I need to insist on being part of developing the Treatment Plan. Most patients are not and, frankly, I think don't care to be.

A word about gritting teeth. I was taught and through experience have learned that in many cases pain in your friend. Embrace it and use it. But, some years ago and again yesterday pain became so severe I was incapacitated. So, while I agree, with the philosophy there are limits. Also, I have had to remind some people that pain alleviation is not the goal. Life is the goal.

Always open for suggestions and help.

[ArcticDiver]

Ouch! Maybe I can provide you with a reference point... I am 50, a computer jockey so I sit on my butt most of the time, moderately good shape overall but not an exerciser type. I dunno if you're older or younger than me

He is way older than you He calls me youngun and I'm 68!

OK, the skunk is out of the bag! I keep my age quiet because, as we have discussed, there is so much age bias and so many people want to put a person in a box based on age rather than getting to know them. Then, due to my age and life experience, I don't handle dogmatic dive snobs very well. So, some folks pre-judge and, of course, their judgement proves to be true.

I certified as a diver under a NAUI program that was expanded to match remote Alaskan conditions, or so I was told, in Valdez, AK Thanksgiving weekend 1999 while wearing a wet suit. It was blowing snow with air temperatures in the 20s. This was a few days after my 63rd birthday. Since then until a bit over a year ago I've averaged over 100 dives per year in a fairly broad spectrum of conditions. I did later go to a dry suit. But, at the time I certified dry suit diving was considered "too advanced" for students.

Last Thursday my current, first, and only wife observed that we've had "quite a ride". Most folks haven't been as blessed so they have a tendency to not believe that anyone can do what we've done. But, the fact is there are lots of people just like me running around who can't think outside the box because for us there is no box.

[Dusty2]

I have never fit neatly into a box and I don't plan to even after I'm gone. When people tell me I can't do something I just get that much more determined to do it. Everyone seems to have the need to compartmentalize people. Life is never that simple. I try not to judge people by any thing. I hear people way younger than me say they can't dive because they are to old. We are who we are. Each of us is a unique individual who has got to this day in very different ways and experienced many different things. There are no hard and fast rules that say when you are too old for this or that. Not even you know what you can and can't do.

I hope you can win this one and be an inspiration to all of us. Pain is a very hard thing to fight and I admire your courage and determination to get through this. Sounds like you have beat the odds before.

Good luck

[RoxnDox]

I try to think outside the box but they won't let me out of it...

Jim

[ArcticDiver]

You folks were very helpful; mainly is establishing attitude. I had my PCM appointment yesterday. Outcome is that her goal is now to restore as much function as possible, My refusal to get more treatment by a doc who was age biased was accepted. I have started restorative PT with a program whose goal is to brng people back to full function after beng casualties. There are now pain studies and neurological studies scheduled to pin down esactly what is going on.

Another encouraging sign is that the PT tells me my MRI is a lot less scary than a lot he has seen where people were leading essentially normal athletic lives.

So there is hope!

[ArcticDiver]

Another good day. Once the attitude log jam was broken the system is definitely working for me. What a wonderful change!

Today I had a workup by a Neurosurgeon's PA who has been doing this thing for 20 years. She cared as much about my prior life and my goals as my current physical condition. Of coourse she is a mature person( Lynne?) so is maybe a bit more sensitive than someone without that life experience.

How will this all turn out? Way too early to tell. But, at this point it appears I will need surgery and some heallng time. But, the PA seems to think any deficit will be minimal. I meet with the neurosugeon next Wednesday who will do a further review. But, my experience is that well trained and experienced PAs are pretty much in tune with their Physician.

We'll see.

[oldsalt]

Great to hear. As you say, you won't know how it will turn out. In my last two surgeries the doctors found and repaired problems from an earlier injuries and I came out better than I was before the injuries I was being treated for. Still, I have restricted some of my activities. I am currently in Vermont with my wife's 50th reunion and ran into a classmate of hers who is making a summit attempt on Kilimanjaro next year. That is the type of climbing I just gave up. I may have to reconsider. Anyway, keep us informed. We are pulling for you.
-Curt

[ArcticDiver]

May sound strange but y'all helping with comments and support means more than you can possible appreciate. I promise I'll keep y'all in the info loop as this unfolds over the next few months.

[ArcticDiver]

Just home from my initital visit with the neurosurgeon. He is recommending a laminectomy wihout fusion for 3 lumbar vertibrae. Thanks to the ego of a different orthopedic surgeon who, last summer, dismissed a knee problem as definitely not eminating from the back when in fact it was I may be left with a permanent deficit. A different doc also dismissed some other symptoms as not coming from the back when in fact they were/are. But, there is some optimism that even though the symptoms are relatively severe they are less than a year old which often brings excellent rcovery.

So. some reason to smile, I THINK