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Topic Surgery After Surgery - Decision seems easy for doctors. Go to previous topic Go to next topic Go to higher level

By Knoosy On 2013.01.09 13:23
Hello Forum,

I posted previously about my PD friend's doctors rushing into DBS surgery as a last resort. I also mentioned his leaning. There were some interesting posts about the Lewy Lean and spinal surgery for ppl with PD.
He was hospitalized twice in a week for his constipation problems that may or may not be related to the spinal issues. The doctors just assume that is the case. They made images of his spine and diagnosed him with scoliosis. Now they want to do spinal fusion surgery on him within a week. I sent his doctors some of the articles posted in the forum and my concerns about spinal scoliosis surgery and anesthetic agents. See also this link:

The article mentions that 40% of people become permanently handicapped after this type of surgery...

I also voiced concern about recovery complications due to his multiple symptoms and physical weakness as well as the delay of the DBS surgery. The doctors response: "He must have the spinal surgery right away. The recovery is 4-6 months (Comment: for people who don't have PD). We will then do the DBS surgery in May" (which is less than 4 months).
What if, at age 70 and with PD, he won't recover at this optimal speed. He has many physical and mental/emotional issues and an all over rapid worsening. The doctors seemed so sure of their treatment process and left no room for any possible complications. The plan is made....can't argue with his doctors. They are very assertive and in a position of power. In the end I would be blamed for his hospital readmissions or worsening health condition if I tried to suggest alternative treatment methods, physical therapy and pain management preventing the serious spinal surgery.

On top of that he is slightly bi-polar and has manic episodes staying up late sometimes, singing and doing little projects around the house. The only joy he currently experiences even though he is in bad shape the next day. The doctors want to add meds to even out his mood. (sounds more like making him into a Zombie) I don't have a good feeling about all this.

By lurkingforacure On 2013.01.09 13:51
A wise friend (high up in a fabulous hospital) told me once: if you go to a surgeon, you're going to have surgery.

Get a second or third opinion. Then, depending on what they conclude, your friend can decide what HE wants to do. It is his body, his choice. If he can stand the pain, why rush into surgery?

You don't mention this but you need to be sure someone has your friend's medical power of attorney. If he doesn't have one, he needs to get one pronto while he still can. If he has any surgery and doesn't recover mentally, he will not be able to execute one, it will be too late. No one wants to be in this position, so talk to him about it. I think you can get blank form ones for free from most hospitals or state medical boards, maybe even county or state aging commissions.

By Knoosy On 2013.01.09 14:20
A second opinion is a very good idea. His doctors are in such a rush that they want to do the surgery immediately while he is still at the hospital after his ER visit due to constipation. They have to understand that we want a second opinion and this will give him time to decide. He gave me Power of Attorney and made me his health care proxy.

By lurkingforacure On 2013.01.09 18:28
For those bravely wearing the badge of medical power of attorney for a loved prepared to incur the wrath of the medical team if you go against their "recommendations"! It can get a bit ugly. I had no idea this was a possibility until I tried to get my mom out of the hospital before "they" deemed it OK (translation: no one is leaving until we have billed Medicare for at least 7 days of hospital stay).

I was actually told if I pulled my mom out before they OK'd it, I would "have to be" reported to the department of aging for elder abuse and there would be an "investigation". It was horrible and I had to explain to my mom in her miserable state why I could not take her home where she wanted to be. Even if I had Hospice and caregivers lined up and ready to take care of every need, no matter.
I couldn't do anything differently if I had it to do over again (maybe transfer to a different hospital), but I wish I had known that this could happen ahead of time as it was very stressful on top of everything else.

By Knoosy On 2013.01.09 19:52
That sounds scary. I just asked him to ask for a second opinion so that I won't be marked as difficult by his medical team. I will help him though to find other experts to consult.
I noticed that the doctors were uncomfortable with me asking lots of questions about their experience, possible side effects and statistics. They just put it in simple terms: "He must have the surgery immediately. There is no other way."
The doctor told me that he will assimilate the meds better after his spine gets straightened. I read that the surgery damages nerves and can worsen the effectiveness of drugs. I try to be diplomatic with the doctors so that they don't get mean like you mentioned but it's hard because they only know one perspective to look at things and that is far from holistic. They look at the patient as if he was a broken car, a physical object that has to be fixed with one invasive surgery after another and don't realize the connectedness between everything and that while 'fixing' one thing another may be affected by that and go out of whack.

By lurkingforacure On 2013.01.09 22:20
You are wise to be careful: damage can be irreversible and your guy is the one who will have to live with it. Follow the surgeon makes money if he's not doing surgeries!

Be careful of who you get the second opinion from, too, there were only three colo guys in my mom's town and none of them would second-guess the may have to go out of town.

Have you considered a really good chiropractor? I mean, someone who really understands the body and knows what they are doing? I have read of a few PWP who have reported significant improvement in back pain after going to see a chiro, these are folks who know their stuff. You can google PD and chiro and see if that might help.

IF you find a visit to the hospital inevitable, be prepared going in: boost the immune system with lots of organic yogurt, high doses of Vitamin D3, fully rested, etc. before checking in. Make sure he is in as good a health as he can be going in, so he can get out as soon as possible. Remember hospitals are no place to rest and recover, plus they are full of germs...the less time you have to be in there, the better.

And remember, you have a say in what anesthesia is used! Find out which ones they might use, then research them to find out which one is least likely to negatively impact your loved one. Anesthesia and senior brains are not a good combo, and PD on top of that makes it even worse. Make sure the one they use is not known to cause problems in seniors or people with PD, and make sure they note your selection in the chart and you communicate it as well to those involved. I would even let them know that you have had it noted in his chart (that's sure to make some friends!) The point is, you can't assume just because you tell one nurse or it gets in the chart that anyone will actually read it.

So sorry this is happening, as if the PD were not enough. Are there any exercises he can do that might help? I would look into that as well.

By Knoosy On 2013.01.09 22:59
Good points Lurking. Thank you. I didn't know that you can pick the anesthetics. You are probably right about neuros not wanting to contradict each other. It won't be easy to find an unbiased objective second opinion. Conventional medicine rarely advocates alternative healing methods. There's no money in it for them. It's their competition. It's sad to see the rivalry. I can feel it when I speak with his doctors as I'm a healer and Reiki Master myself. I have friends in the healing community and much evidence of alternative healing success.
Yesterday I visited him in the hospital. These are places to get worse not better. They won't let patients rest with nurses coming in to measure the vitals every half hour, cleaning staff, doctors, med students, people with meals everyone disturbing the patient 20-30 times a day and I was the only one it seemed who used the hand sanitizer. His roommate had bacteria in the urine. I hate hospitals. They're so cold and lack any form of healing energy.
The chiropractor is a good idea too. I also believe in Ostheopathy. I just had an amazing treatment myself in Europe. It's less invasive than Chiro.
I teach yoga and do yoga therapy. I worked on my friend and he was painfree afterwards, even felt de-blocking in his body and tingling, but passive treatments are not enough in his case. He needs to exercise to strengthen his back muscles and to build bone matter. That can be triggered at any age. The problem is that he has no interest at all in exercising. When I tried to do yoga with him, he just giggled and hardly participated. He didn't get the point and I can't get him to understand that exercise could be the way around having surgery. Even with surgery physical therapy and exercise is needed to rehabilitate. I don't know what these doctors are thinking knowing that he is homebound and can't do outpatient PT. I asked if they recommend he get an exercise bike. They looked at me as if i was from another planet. LOL. I once went to a PT session with him and the therapist had him ride a bike. He stopped paddling as soon as the therapist turned his back on him and the therapist didn't feel like standing next to him and encouraging him to continue. It was ridiculous. In some way and to some extent we are all responsible for our health. Even if illness strikes we have an effect on severity by our active involvement in the healing or halting process thereof. Just passively relying on a fix be it pills or surgery is not the way.

By LOHENGR1N On 2013.01.09 23:49
Knoosy, Another important thing to check and make sure of when in hospitals (as if we haven't given you enough to check and make sure of) is medication dosing. Sticking to his schedule of taking med's. You'll have to make sure His Doctor writes on his chart the time between doses. As an example if one is taking Sinemet 4 times daily and each dose is four hours apart until bed time that is what has to be written down. If the prescription say take 4 times daily that is what they'll give him. Every Six hours instead of every four until bed time. Many times you tell them and they will ignore it unless noted upon his chart by his doctor. Things like this can knock us out of whack and cause problems that can take weeks or months to get back on schedule when home. Sorry about overwhelming you with all this but it will help him in the long run and recovery time and sadly has been learned the hard way by many patients and caregivers alike going through hospital stays.

By Knoosy On 2013.01.10 16:55
Thank you for the advice, Al. That is a lot to have in mind along with having to be diplomatic with the medical team in order to implement this. I just hope they realize that since his PD has been progressing more rapidly, there may be a prolonged recovery time after spinal surgery which may eliminate his chances for DBS. I feel that it would be smarter to do DBS and then spine surgery which would enable him to exercise to help with the rehabilitation after spine surgery.

By jcoff012 On 2013.01.10 22:09
As someone who had three surgeries for cancer, in three months, I want to tell you something that 1. My doctor told me and 2. What the second anesthesiologist told

1. Doctor, "Jane, never be afraid to ask questions or ask for advice. As your friend, I love you and want you well, but, as your doctor, I work for you and keeping you informed is my job. Remember, ALL of your doctors work FOR you, don't relinquish your right to know." LOVE her!

2. "Jane, ASK. Ask away. Get comfortable before you go into surgery. You will recover faster if you ask questions til you get all the answers you need."

I agree with my teams...I had tremendous doctors, so I never felt I had to be diplomatic...not rude, just asked for information. Jane ;). my husband has great doctors, but I don't care for his neurologist...but he closed!

By Knoosy On 2013.01.11 09:11
When you have a good doctor you trust, count your blessings and stay with him/her.
I feel that I have to be diplomatic with my friend's doctors because they already signaled that they are uncomfortable with too many questions. They just want to be the authority that decides what is best and you're just getting in their way of implementing everything fast. I found an experienced specialist and will set up an appointment for a second opinion. BTW my friend's medical team keeps prescribing him mood stabilizers. Meanwhile one of his doctors who keeps pushing all those pills on him seems a bit unbalanced, could use them, too...LOL.

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