Operations with ITP

(repost here as I post it in the wrong category earlier sorry)
Hi, I was scheduled to have hysterectomy this summer in the UK and has been postponed twice now because of my low platelets count. I have a count of 74 (normal is 110 -150, I am in the UK so units may be different). If I am a borderline (so told) of 74 and can't have the op so how do the good ppl here with very low count of 10, 20 ever have an op or even splenectomy? They said I would likely bleed to death if I had the op.

My op was postponed just 1 day before the op date. The haematologist wanted to put me on steroids for a week but my surgeon didn't agree.

In the UK healthcare is free, I have private insurance with my job so I went private. I suspect the surgeon now chickens out because it has cost him time (2 cancellations) and I am high risk, I don't know if he can charge for the cancellations. I might be wrong but I am very disappointed as you can understand.

I am now waiting to see a national healthcare gynaecologist for second opinion.

I don't bruise easily but I do get tired easily and I am quite stressed recently. I am now worried that if I need a life saving operation in the future I might be denied again. Is there anyone here who has ITP and had undergo surgeries? How did your doctor prepare you for the operations?

Thank you very much in advance.

Jin:

Most people have few problems having surgeries with ITP. The most common thing to do is to treat to get counts up. Some use steroids prior to surgery, some use IVIG, and recently, Promacta has been used before surgery. It's normally not a very big deal unless counts are very low and do not respond to anything. I'm not sure why your doctors are having such a huge problem with this. If someone is a bleeding risk and bleeds during the surgery, they can be given platelet transfusions.

Splenectmies have been done with counts under 5k. It's not an ideal situation but it can be done. I would hope that you would not be denied surgery in a life-threatening situation. It's better to try than not.

Maybe you need to see a different surgeon. You'd be surprised at the differences in opinions that we see sometimes. What can be a big deal for one may not faze another at all. Your counts are not that bad; most surgeries can be done with counts around 75k. The only problem with steroids before surgery is that you should continue to take them for a few weeks after the surgery so that your adrenals can handle the trauma of the surgery. Steroids also raise the risk of infection but believe me, many of us have had surgeries done while on steroids and had no problems.

Fervenz (also in the UK) posted his NHS guidelines for ITP which stated that, for splenectomy, "A platelet count of >30 x 109 /L is suggested pre-operatively." I have seen elsewhere >20 for laparoscopic surgery. I have seen guidelines that say 75 before surgery, and must maintain 50 during surgery.

I am unaware of anyone on this site ever reporting excessive bleeding during a medical procedure. My impression is that the concern from surgeons (and even dentists, etc.) is an overabundance of caution. The "likely bleed to death" comment sounds like a scare tactic.

With steroids, you are trading risk of bleeding for risk of infection. I suspect that was your hematologist's thinking in disagreeing with pre-op use of steroids. Judgment call. However, if you respond readily to steroids, and your count of 74 is already close to guidelines, the amount of steroid you would take might be minimal.

Good luck with the 2nd opinion.

I can add a bit to this since I'm currently scheduled for a neck surgery (though when exactly I'll have it remains to be seen). My surgeon sent me to my hematologist to double-check my status, and both agreed that my counts (at that time just over 100) were more than adequate for the surgery, no pre-treatment with steroids necessary. My surgeon also told me that she'd be comfortable operating if my count was above 75; if lower, she'd wait unless the situation was an emergency. My hematologist said basically the same thing.

Another potentially useful tidbit. Last fall my mother had major abdominal surgery for pancreatic cancer. She'd just finished a round of chemo and so had low counts, and her surgeon simply put more blood on reserve and went ahead with a massively invasive procedure that involved removing several abdominal organs over a 7-hour period. It was about as major a surgery as anyone ever had performed, and they could have waited but felt she was good to go. She did fine.

I hope you can find a surgeon who understands ITP and will work with you.

I just find it interesting how every doctor is so different on what they say regarding platelet count/surgery.

Dental surgery - cutting into gum & bone - he wouldn't do it without permission and a platelet count from my hematologist.

My dentist never asks about my count - but he has a friend with ITP so knows about it.

My hand surgeon - 2 surgeries - never questioned my count, but one was done about a week before.

As of January 1 I have a new hematologist because my former [and great] hematologist passed away - the new hematologist commented she'd approve brain surgery with a 50k count.

An interesting tidbit I heard in the elevator of a hospital - small elevator, no way I could not hear their conversation - "the doctor cancelled the surgery until she has been off steroids for a while".

Good luck to you Jin Joes, everything will work out.

I had a splenectomy at 70
Wisdom teeth at 30
Had a baby at 40
Port placement at 40 it all depends my Drs magic number is 50 for anything I rarely get there but that what he feels comfortable good luck

It depends on the procedure too. Some can be performed with little blood and some can be more dangerous in that regard.

Hi there,
Twice in the last 18 months I have had IVIG in preparation for surgery. The first was a planned colonoscopy & the second unplanned appendectomy. My new haemotologist & both surgeons consulted with each other.
I react to IVIG with severe headaches, however am fortunate my counts stay up for several months. Currently 53 after last IVIG in March.
Hope you can get sorted soon.
Best wishes from Down Under,
mj

Steroids are avoided because they significantly impair wound healing. IVIG or Nplate would be a better choice.

Thank you soooo much for all the replies. I feel better now and accepting that different surgeons have different safety levels.

However, I feel the surgeon should have just told me he didn't want to operate on me rather than told me how serious my condition is and I was 'likely' to bleed to death during the operation.

The surgeon did organise blood transfusion for me the afternoon before my op, but the haematologist told him my new platelets would only be destroyed again by the next day. Should they have discussed about it already? Rather than the day before my op??

My husband now wants me to wear a medi alert bracelet. I bumped my wrist the other day so I tried to time how long it took to bruise and heal, it was quite painful but it only turned red for a few minutes! So I am really gutted about the 'you are likely to bleed to death' comment!. It really worried my husband and my 17 year old daughter was tearful the other day thought I am going to die on the operating table if I have any surgery! I am definitely going for a 2nd opinion, not aiming for hysterectomy now but the truth and closure.

Don't get too worked up about it. You might see another surgeon who will not have a problem with performing the surgery. Some doctors over-react because they are not familiar with ITP. Counts of 75k are safe.

I had a hernia op (3rd) last November , it was very close to a previous hernia op 30 years ago so was not straight forward, my consultant in the Haematology dept put me on Prednisolone 2 weeks prior to Op date, decreasing dose after op. My count was 57 prior to starting Prednisolone, back a week before op, it was up to 100, day before op dropped to 57, doc increased dose otherwise op would be cancelled, morning of op my count was up to 74. So the op was on that afternoon.

No major problems to speak of, bleeding wise or from the Prednisone

South-west, England