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Husband having surgery Tuesday 3/2
I have been reading all of your posts for a while now. My husband is having a RC on Tuesday. I have some questions. I have been trying to get him to use a hospital bed when he comes home. He thinks that he will be happy in his recliner. This seemed to work when he had his 2 TURG. Any thoughts? Also there is a member that goes by the username DUKE. We too are in Salem, I was wondering where you had surgery. My husband is having surgery at Good Sam in Portland with Dr. Bruce Lowe. Thanks, Mary
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65 Replies
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Thanks again everyone for your support. Well today I went and he is doing a little better. They sent a PT to make sure he could navigate to the bathroom by himself using a walker. He still can’t put weight on that leg, but he did well. The on call urologist, who I spoke to reguarding his blood pressure yesterday, cam in to see him. His blood pressure is still high, the low number, anyway he asked if my husband wanted a second opinion. HOORAY! Fortunately my husband said yes. The nurse was very impressed because they called in an internal medicine guy, ON A SUNDAY! So I think my veiled threats so to speak worked. Anyway he put him back on a pill he had taken before the surgery. We will see if this was the answer. I do feel like someone has taken me seriously. So I will let you all know how tomorrow goes because I do believe he will be coming home.
Mary -
Mary,
Have been waiting to hear from you and thinking about you and your husband. Was hoping the news would be better. Very sorry to
hear things are so complicated and so hard on both of you.
As far as taking tubes out it seems a little early if he is still
having that kind of trouble. It’s great to have cath out but not good to have to re-insert. I wish there was more we could do for
you both. Keep pushing to get the answers you need and the help you need.
Wishing both of you the best.
Duke -
Mary you’re getting a lot of “i don’t think so’s” instead of “I haven’t the slightest idea”. Here’s one study on nitroglycerine after surgery
http://sciencelinks.jp/j-east/article/200212/000020021202A0405017.php
He should be getting something for his nausea…that is quite common with this surgery…phenergan is one of them but with his spiking blood pressure i wouldn’t recommend it. Zofran another which is used a lot in patients taking chemo and if anything this one reduces blood pressure. However, if he can’t keep anything down at all and is vomiting i might suspect an ileus. Keep watching him.
http://www.drugs.com/pdr/zofran.html
I would talk to the social services person at the hospital as i’m sure your husband is going to need Physical therapy and probably a transfer to another facility that provides that is not on your husbands agenda as he wants to go home…but maybe they can provide at home care? See if they can help you.
If he has that much mucus blocking his main tube i question why they would take it out so soon…it needs to be irrigated daily. I had mine for 3 weeks after i got home.
Hope the other guys can comment on that one.
Wish you both the best Mary………Pat -
Hello everyone. here is the latest. CK level were taken they were 2400 and came down to 1123. I heard normal is 200. His leg swelling has improved dramatically. His MRI showed some muscle damage servere inone compartment and minor in another. Prognosis is undetermined at this time.
But there will be some disability at best. Ortho has him in a boot to keep his foot at a 90 degree angle. He has been on complete bed rest only getting up to use porta potty. He is depressed and resigned but not fighting me when I question the drs. and nurses about my concerns. So it appears that the leg crisis is done they will not have to amputtate but once again we do not know the extent of damage. They are talking about releasing him Monday, 3/15. Some concerns now is that his blood pressure has spiked, it had been normal, 103/158 highest.They gave his a nitro patch Fri. night to bring it down, but yesterday it was starting to rise again. I spoke with the on call dr. asking if a urine myogloblin test was needed to measure muscle waisting protein in his urine, thus effecting kidneys, thus raising blood pressure, and was told I don’t think so. When I go up today I will see what his pressure is taday and go from there. They mentioned that his drains and stents may cme out before he goes home. That would be nice. You have to understand that he can’t put any weight on his leg and it is still estremely painfull. He is down to 2 oxycodone every 4 hours. He hasn’t eaten hardly anything, he is sick to his stomach and lost his breakfast yesterday. The only thing he has really eaten is a couple of protein shakes the nursing staff makes. I told him I wasn’t taking him home until he could make it to the bathroom by himself with his walker. I am not trying to be mean of course but I am concerned that I will be abole to take care of him. He absolutely has his mind made up he’s oming home Monday, he is so tired of being in the hosp. We have asked for his hosp records and I have contacted the hosp. admin., left messages, apparently the don’t answer on weekends. In order to lay some ground work for possible future litigations. The mucus in the neobladded would not come out for 2 days but yesterdy they were able to get out 3 syringes full of gunk. Anyway I will keeep you posted.Mary
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Oh Mary…all i know is he is an orthopedic surgeon
http://www.orthosportsmed.org/pages/weintraub.php
One of the top orthopedic surgeons in your area is Dr. Jung Yoo
http://www.castleconnolly.com/doctors/full.cfm?source=ccm&doctorID=74CC000125
There is a contact number on the page.
I would certainly try to contact him if possible. I do not know the window of opportunity for a fasciotomy but get another opinion fast.
http://catalog.nucleusinc.com/generateexhibit.php?ID=173
If your husband is shutting down…kidneys especially..he is not capable of making a decision for himself. The CK levels most important. Do you know what they were?
pat -
Patricia, what do you know about Dr.Ira Weintraub? He’s the ortho guy who is consulting. I am so frustrated with the drs. but also with my husband. He won’t let me make waves. The problem is the very at the very least he will have permanent damage, and at the most death. I just can’t get him mad. I’ve read all the internet reports to him. We’ve had friend and family who are nurses talk to him, He just doesn’t seem to want to rock the boat. One nurse is a surgical nurse who has spoken to her surgeons, the other is a hosp. administrator. They are telling us to file a complaint with the hosp. admin. That way they start reviewing the case and you get better results. So he is having another MRI today, this one on his leg. The ortho dr. never did come back yesterday and I missed his urologist this morning. They started him on blood thiners and checked his CK, creatine/Kinese levels. We were told to ask for a urine myoglobin test to see if there is protein in the urine from a dying muscle. The dr. told my husband that it would be inconclusive because of his bladder surgery.
Mary -
Mary..this is just alful..failure to diagnose
http://www.newyorkpersonalinjuryattorneysblog.com/2009/06/medical_malpractice_failure_to_diagnose_compartment_syndrome.htmlpat
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Hoping for the best!
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Today is Tuesday 1 week ago he was in surgery. So Orthopedic dr. finally came in to see my husband. He does infact think He has compartment syndrone. Ofcourse I wasn’t here when he came in and so this info is from my husband. He said the window of opportunity had passed where they make an incision to let the swelling have some place to go. What he didn’t say was what he thougth the long term prognosis might be. We think he is coming by again today so I will have a lot of questions. I’m sure all of you have read up on the subject and know that amputation can be an end result. My husband is very alert today and is mostly relying on the 3 oxycodone every 4 hours for pain. He still has the morphine pump but is trying no to use it. He is on total bed rest because of this leg. The really great news is that they gave him supositories today and he had a bowel movement.
That means chicken broth for dinner. Yipee! He hasn’t eaten in 9 days. We are also having some problems with skin breaking down, like on his bottom etc. Ok, I’ll let you all know what happens.
Mary
Mary,
NOTHING said under the influence of morphine counts. The brain is all screwed up with morphine and can cause the mouth to say things that are not meant to be said.
Let all that go and don’t even think about it. He was out of his head.
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Thanksn everyone. The dr, said he did not think it was compartment sysndrome. When he say why my cell phone rang nd I didn’t catch everything. I read up on it and it does seem to fit. I also read up on lymphedema and there are a lot of similarities. Anyway they turned down his morphine and he came back to the real world. I think for the first time he is demanding an explanation. Before I was the one and he was getting very annoyed with me because he said I was embarassing him. He needs to get mad and take charge which is what I think he is doing now. I finally came home last night and I am on my way back now. I’m about 50 minutes away. I’ll let you know what I find out. Thanks everyone I really appreciate you all letting me vent and esp. all the great advice. Rick I sure hope I am not scaring you and your wife. Make sure she has a computer so she can keep in touch. I bought this little notebook for that reason.
Mary
Duke, How true, That is exactly how I felt. I was all worked up for what? Even once they took the epidural out, I really wasn’t in much pain.
I feel bad Mary, things should not be going this bad for you.
Jim
Age 54
T1NOMX,Grade 3 Urothelial CIS (Carcinoma in Situ)
Neobladder 5/19/2009
Prostate Capsule Sparing
U of M Hospital, Ann Arbor, Michigan
Mary, and Rick; I do not do well on morphine either. But here
at the hospital in Salem,OR. the epidural is pretty much
standard for neo surgery. It was what i just had two months ago. I can tell you when i woke-up i couldn’t figure out what
the big deal was worrying about pain. I told friends and family
i felt great! And i did for the first three days. On day four
when they took out the epidural, then i new what the big deal
was about pain. But i took no pain pills after that so my
digestive track could start working. Really i think a epidural
is the only way to go.
Mary; i don’t know if they can get him off morphine and go to
epidural or pills but you can sure ask. He shouldn’t have to lay there out of his head or in pain from his leg! IT’S A HOSPITAL, TWENTY FIRST CENTURY! SOMEONE DO SOMETHING!!!
Someone needs to get the doctors attention!!!
Duke
Epidural seems to be the standard pain management technique here. Spoke to another survivor and that is what he had and what my Dr told me to expect. Hope so, cause if not, there will likely be a linch mob outside my door within a day or so… I do not do well on the morphine :) Rick
RickMary..you really must stop having those rowdy parties outside his room!! :P My father kept accusing me of doing the same thing at his house…that and stealing his wallet!!
See if you can get ahold of the pain management team and possibly give him an epidural for the pain. That is done in many hospitals now for cystectomy. It just takes the edge off the first few days which are truly very painful. By day 3 it still hurts and i never did get to a fully upright position when walking but pain was manageable. Everyone is different.
But not wanting to frighten you please ask about this
Well leg compartment syndrome (WLCS) is being seen more frequently as the complexity and duration of pelvic urological surgery increases, ie reconstruction/radical cancer surgery. The etiology of WLCS is multifactorial and prevention should form the mainstay of treatment. With significant morbidity and mortality, in particular lower limb morbidity secondary to fasciotomy wounds and long-term neurological sequelae, all urologists should be aware of this iatrogenic complication and how to prevent or treat it when it occurs.
Also explore this article on lymphphatic injuries in surgery and the test for them.
http://www3.interscience.wiley.com/journal/123305656/abstract?CRETRY=1&SRETRY=0
none of this is to scare you ..just to arm you to look into any and all possibilities.
Just cover all the bases……..PatSign In to reply.
