Need advice..

[Blu]

To all my freinds here (and I consider you all my freinds) I need some serious advice. I dont have many close freinds and due to my disability I  dont get out much and have many freinds close by to talk to.
I post here..because I need advice... Im  lost right now...I need an open outsiders kinda  view to offer some suggestions.
I intend to be as open and honest as I can, not to illicit any pity or anything,  (frankly... I hate that some tend to do this but, bless their hearts as I know its well meant)) merely to bring you all up to speed, give a complete picture and hopefully get some  good feedback or other options or fresh outlook..we (Jay and I) are fresh out of ideas and stumped on what to do.

If you have questions or need more info or somehting isnt clear ..ask. You wont offend me and Ill answer!

 If you feel more comfortbale doing this via PM let me know. If you'd rather talk in person let me know that also and I will call you (we have unlimited long distance).

THANKS in advance, Randy

WARNING: This post is very personal in nature,dealing with health issues, LONG... and may not be everyones cup of tea. However should you choose to read it and comment in a thoughtful manner I would sincerely appreciate it.




To bring you all up to speed...

About me:
I am a former truck driver.
I am happily married to my wonderful wife Jay for 26 years this year, and we have 3 grown kids, 1 grandson and another on the way.
I am 46 years old.
I have made mention of health problems and disability but never gone into much detail about things as they are.
I have been totally disabled since 2002.
I have been on SSD (Social Security Disability) since early 2004.
Medicare is the only insurance I have.
I am 6'0" and now weigh approx 375lbs.
I am very muscular and in good health  (BP, cholesterol, supgar, etc.)other than the following.

About my health:
I have had 8 knee surgeries (4 each knee), from broken chips of bones needing removed, to cartilage torn and dislocated kneecaps.
There is NO cushion between the upper and lower leg bones and they rub together and wear as I walk, ocasionally flaking off.
My knee caps are also wearing on these bones and have created grooves.
It is extremely painful to walk and I must use a cane to walk short distances.
The left knee is the worst and it sometimes locks up or just fails to suport me.
Doctors say they cannot do a knee replacement  due to the instability of the bones the replacement must adhere too.
Doctors  (including a knee specialist) have said there is simply nothing more they can do.

I have had 2 back surgeries for 4 ruptured discs.
I now (found this out yesterday) have  a VERY large bone spur between L4-L5 (exteme lower back)vertebraes and at least one ruptured disc.
I cannot stand for more than  5 mins at a time without great pain.
I have DDD (Degenerative Disc Disease) which esentially means that the discs are falling apart.
Doctors say they will not operate any further due to my weight.

I have had one vascular surgery on my lower left leg.
It swells if i dont keep it elevated.4-6" larger than the other calf.
It hurts at all times (feels like  the start of a a charlie horse  at all times and gets worse the longer Im up on it).
Cardio specialists say the valves that prevent blood from backing up are shot. They cannot be fixed there are too many.
I cannot walk more than 100 yards or  longer thana few monutes without the pain getting MUCH worse.
It is getting worse and will only continue to get worse.

I have osteo arthritis in my back and  knees and it has now spread to my hips, shoulders, fingers,wrists etc.
Doctors say it will only get worse also.

I take 60mg of Oxycontin every 12 hours for the pain of all this.

Having said all this...the left leg is the MAJOR pain producer. The knee hurts all the time and is VERY bad, and the lower leg calf is extemely painful and never stops hurting. Everything else is tolerable even as bad as it may sound.


My solution:
After much soul searching and research my best solution (rememeber the left leg from knee down is the worst and becoming intolerable) is the removal of the left leg just above the knee and getting an artifical leg.
The advances made on these are INCREDIBLE, they are VERY functional, life like, and respond well, and althoiugh I know it will take some time to adjust (approx 1 year) I will at least be able to walk and do a little bit. It will eliminate the knee and vein issues which are casuing great pain at this time and which im assured, and can verify..will only get worse over time.
After a good long  discusion My family doctor (of over 20 years and knows my whole history) is in favor of this as ithere have been great strides in orthopeadics.. and it will resolve 2 major issues AND get me off some of the pain meds (which are really not good for you long term, causing liver damage, etc.iI have been on them for nearly 4 years, I am addicted to them I know BUT as my doctor says.. I have no alternatove at this point as the pain is unbearbale without them).
It is also a VERY simple and safe procedure.
The hope and plan is that while it will surely alleviate the pain of the knee and calf it will also by doing that help me to walk around, get out some, get of the strong pain meds, and get some much needed exercise and lose some weight on my own. Make sense?It sure does to me and my family doc.


The problem:
After the decison was made to go with the removal I was instructed to see an orthopeadic surgeon.
The first one I went to was not in favor of removing the leg and instead suggested bariatric surgery.
A few concerns here..
1) bariatric surgery is not all that safe (my family doctor is NOT in favor of it at all) and I have heard and seen about as many horror stoires as good results.
2)While I CAN see where reducing weight would help the joints and such I truly fai to see exactly HOW it would help with the pain due to the vascular problems in the lower leg. Remeber..THIS is the most painful problem. My family doctor cannot see how this would address this issue either and therefore not in favor for the reasons already mentioned.

I asked for a second opinion then...
Yesterday, I saw another orthopaedic surgeon at a different place with (after discusion with my family doc) the mindset that although we cannot see how exactly the bariatric would help the lower leg..IF he also agreed with bariatric, I would go ahead and do it.
After a good deal of discusion he had me get an xray of the knees. It revealed a lot of arthritis and wear with the left knee being worse (which I already knew about), then we talked about my back. he had me then get an xray of it.
It revealed a VERY large bone spur between the L4-L5 vertebraes (which I didnt know about) and a lot of wear on the discs from the DDD (which I already knew).
Now..all discussion of bariatric AND removing the leg disappeared!! Now..HE wants me to see a knee specialist (even though 3 have ALREADY said there is NOTHING that can be done) AND get an MRI on my back and see about fixing the probs there  although Ive ALREADY been told I have DDD and they will NOT operate!!

See why I dont know what to do now??

I think it is a waste of time and money to get these tests done and see other doctors (that ive already seen ) to tell me what I already know...that they are shot and there is noithing that can be done.
The MAJOR problem is the left knee and lower left leg! I fail to see exactly how getting  my back fixed is going to help the knee OR fix the vascular problems that we already know exist.
 We left with more questions than answers unfortunatly and he seemed to shy completely away from  choosing between the bariatric OR the amputation route and instead gave me a route of something I know just certainly will not work.
Meanwhile..Im scheduled for an MRI Monday.


So..what would you do?? I think its a waste like I said.I ALREADY know what it wil show and what they can do about it..NOTHING.

I also dont have clue where to go from here though.

 We have, me and my family doc in favor of the removal and artifical  replacement being done, one surgeon in favor of bariatric surgery (again I cant see how exactly that will help the vascular problem?), and one surgeon in favor of getting MRI and tsts done and seeing other surgeons to correct problems (which I already know that they wont or cant do ,AND still will not address the vascular pain problem either).

Soo..I ask you my freinds..what would you do at this point??

Again...if youve read this far and feel like you might have something or just another way of looking at things let me know. I appreciate it greatly and were stumped right now...

Thanks, Randy

[IndyCarzGo]

In short...HOSPITAL FOR SPECIAL SURGERY, NEW YORK.... Had spinal surgery there... rated  Top Ten all world!!! WIll send ya  an e-mail with more details...hang in there....

[Blu]

Thanks Bud Anything is appreciated and Im open to ideas or sure.

[PlanoHarvickFan]

Sorry to hear about all your trouble.  Not sure what your ortho is like, but I have a wonderful orthopedic surgeon that does hip and knee replacements.  If you're interested, I'll give you his name.  I assume he is one of the best because he had people come from Jordan when I was there one time to get an evaluation.  Sounds though like the pain maintenance is the most important issue.

I will pray for you (that you make the correct decisions FOR YOU and everything works well)

Gracia
aka PlanoHarvickFan

[skool]

Blu,
I would go with what your gut, family and doctor tell you.
If you have accepted the idea of losing the leg and all the rehab that it entails and are willing to do that, that is the route I would go. As you said, there have been great strides in the artificial limb area.

Forget the last doctor who wants to do back surgery. Do what you know is best for you. (And, I think you already know what that is.)

You may still want t lose some weight, as that will make rehab that much easier. On the other hand, the removal of a leg will result in a major weight lose in and of itself. (Ask any vet who carried a buddy out after stepping on a land mine). Legs are heavy.

Also, if you do choose to have the leg removed and after rehab, you will find that you are more mobile and the added mobility will increase the amount of excercise you receive and the amount of calories you burn.

I know losing a leg is a big step, but I know from experience with diabetic friend who have had to have lower limbs removed, once the circulation is that bad, it is eventually going to come off anyway. Might as well do it now and get back on the road to recovery and get rid of a major source of your pain.

You are/will be in my prayers.

[Checkeredflag]

Blu, I'm so sorry to hear about your problems.

I am not a doctor, so please know that anything I'm telling you doesn't have any medical knowledge behind it.

Several years ago, my father had a triple bypass.  They remove a vein in the leg to use for the surgery.  After his surgery, his leg swelled up and was very painful.  He kept it elevated, he did what the doctor said, but it was stubborn.  What finally helped him was exercise - in his case, riding a stationary bike.

Reading about your knee and back problems, I know that a bike is one of the worst things you could do for exercise, but have you looked into swimming to build your legs up and improve your circulation in your lower legs?  I do know that the resistance of the water gives a good workout, without the jolting of your legs or back that a bike or treadmill would do.  It could be something for you to look into or at least ask your doctor about.  It may even help ease some of your other pains, as you build muscle which will help.

If you can do something like that, there may also be the added benefit of taking off some weight, which would reduce the stress your knees are under.  Maybe that would help give you and your doctors some alternative treatments and buy you some time before making this decision?

You're still young, you still have many years ahead of you.  There may be a solution out there that will give you the quality of life that you want, so that you can play with your children and grandchildren for years to come.

I can understand that pain makes people want to make decisions that will make the pain stop, no matter what. If you and your doctor really deep down believe that this will stop your suffering, then you'll know it's the right thing to do.  It's a very personal choice for you and your family to make.  But, if you do go that route, it is permanent.  You can't change your mind.  Please make sure it's the right choice for yourself and your family in the long term.

Good luck, and I really wish I had some information for you.

[Blu]

THANK YOU ALL!! That is what I need!

I'll respond a bit later on these, got a few things I need to do this a.m. but I sincereley THANK YOU!!

[FS_Amy]

Blu, I can't say that I've ever been in your situation, but I can give you one piece of advice that I have learned from my own medical experience.  YOU know your body best, and you owe it to yourself to work with specialists who understand and respect this.  In the end, you need to make the decision that feels right to you.  The only suggestion I might have is to (if you haven't already) have your family doc (and any other specialists you saw previously) send all your records to the specialists, and ask the family doctor to speak with them as well-both the family doc and the specialist should be more than willing to have a dialogue.  That might help them get more on the same page.

In the meantime-the FS family is pulling for you!

[Colorado NASCAR Fan]

Hi Blu,

Some of you from the old board may remember that my father-in-law had his right leg amputated just below the knee due to a bad infection in his ankle from his Rheumatiod Arthritis in December 2004. 

It is a very difficult decision to make regarding the amputation of a limb. However, it sounds like you are willing to go through everything that comes with the amputation.  If can go in to the surgery with a positive outlook and not let yourself get down if a setback occurs, I think you can be very successful.

I would caution you to look at this option very long and hard, although it seems as if you have.  I would hate for someone to go through this surgery and then decide they made the wrong decision.

Please feel free to PM me if you want to discuss how my f-i-l is doing.  I am not going to get into that on the board.

I hope you can find the strength and guidance to make the correct decision.
Hugs,
Erin aka Colorado NASCAR Fan