Surgeons

Can anyone recommend a surgeon in the Washington, DC area or on the east coast who is knowledgable regarding ITP to perform a splenectomy? My 26 year old daughter, diagnosed with ITP March 2010, has tried most of the non-invasive treatments and has decided on surgery. We want a surgeon that is aware that spleen tissue may be found elsewhere in the body and will know to look for it, a surgeon that will know that the organ being removed is not damaged but is an organ that working overtime to get rid of something it should not be.

She is no longer looking for alternatives to surgery. She has tried just about everything mainstream and alternative to deal with this, with no improvement. She understands that there is not the greatest prognosis for a complete cure with a splenectomy, but she needs to get on with her life - a physically active lifestyle up until two years ago.

Any recommendations for a surgeon would be helpful.

Thanks,
Andy

Hi Andy -

Like your daughter, I tried everything to get off prednisone for about years. THen my numbers plummeted last Autumn (despite high pred dose) and ended up with a splenectomy at U Maryland in Baltimore - and have been in remission since.

I did a lot of research and found an experienced surgeon that I thought was very good. - Dr R. Alexander.

Here are some links

www.umm.edu/doctors/h.%20richard__alexander,%20jr..html

www.umgcc.org/news/alexander_Q&A.htm

I wish your daughter healthy numbers!

Mark


Dr R Alexander at U Maryland

Andy,
Great criteria for a surgeon! Questions like 'what do you do to assess whether there is spleen tissue elsewhere' make a lot of sense, it sounds like you've got an excellent plan for going forward. Please let us know how things go, and how successful you are in finding a surgeon who is a great choice for the particulars of ITP.
Erica

Erica- thanks for reminding me- I should have mentioned this-

Dr. Alexander and I discussed the possibility of ectopic spleens. He found none on the cscan - but said this was inconclusive with this mode of imaging.

He then looked during surgery - and also found none. Of course the absence of proof is not the proof of absence. He also did the surgery laparoscopically - during which it is harder to find such structures.

FYI, when we were considering the surgery during very low platelet values, he was planning not laparoscopy but open surgery, because bleeding can be more easily observed and controlled.

M

Mark - Thanks for the referral to Dr. Alexander. If I may, how did the surgeon control for bleeding pre-operative, i.e., N-plate, platelet transfusion, etc? How long was your recovery? How did the surgeon control the risk of post-operative complications, i.e., bleeding, infection?

So many question, thanks for sharing your experience.
Andy

Erica - thanks for your response. Your remarks are valuable in cofirming that we are asking the right questions. We will follow up Mark's lead with Dr. Alexander. Of course we still look forward to other referrals as well.

All the best,
Andy

Andy-

Re: control for bleeding

Like I said, my platelets had bottomed out –values were bouncing around 2-6 each day for about a month, I was turning purple w bruises and I wasn’t responding to anything (including Nplate). So the plan was to use platelet transfusions and open surgery to control bleeding during the splenectomy.

Then we decided to up the Nplate dose and wait to see if I would be a late responder --which I was. After 9 days in the hospital (although we had been trying Nplate for longer than that), my numbers finally rose to about 15, at which point they sent me home, to get away from potential hospital infections, expecting my platelets to rise further. Indeed – within 10 days they rose to safe enough values for a return for laparoscopic surgery.

Re:personal interaction. Dr Alexander was often rushed but when he found time to talk, he and his staff were responsive to my wife and myself. He had an excellent hemotologist on his staff- Dr Ann Zimrin. My wife and I fully participated in decisions – for example it was our idea to wait longer for Nplate to kick in. I should mention here that we both used our credentials early in the relationship to establish that we would be active in decision-making. Both my wife and I are both working scientists. My wife is a Harvard trained epidemiologist – and she immediately got a French epidemiologist involved, via email, who had done an Nplate study. I run a research division of the Cancer Inst. within the NIH, but I am not a clinician.

Recovery: the operation was on Nov 3 and I returned to work on Nov 13. This may not be relevant, but since then I would say I am still not really fully recovered because of the damn prednisone taper, which is wiping me out. For about 8 years it was the only thing that kept my numbers at a safe level…during that time I tried everything to get off it except the splenectomy… and in this past fall I was on a 150 mg/day dose. Tomorrow I go down to 1 mg and a week later none! Finally!

Post-operative bleeding I can’t really address. The danger was the same for any normal-plateleted person. Frankly, at the time we were so relieved that my numbers were safe via Nplate that we didn’t worry about the surgery per se.

Finally I’ll mention that I decided that the chance of being drug free with a splenectomy was preferable to periodic treatment of my blood marrow with a growth factor (Nplate). I prefer to use Nplate as a backup. I’ll point out that many here at this forum thoughtfully disagree - and you should consider their opinions- for example, Sandi’s.

Good luck and ask any other question that may arise- maybe there’s something I’ve forgotten to mention.
Mark

Mark- thanks for sharing your experience and background. It is good information and should help our daughter, Melissa, make the difficult choices. Looks as though she needs to start making arrangements now if she intends to have surgery mid-May. We also appreciate your mention of the hemotologist, as Melissa has had a bad experience already trying to coordinate services between her previous hemotologist and her gynecologist - yet another nightmare!

Melissa's count has ranged between 6k - 15k since she was diagnosed. Prednisone was hell and made it difficult to do her studies (3rd year law) and didn't work, didn't respond to Igiv, the other traditional treatments and a number of alternative treatments have not shown an improvement either.

We'll try to keep the PDSA community updated as we move forward.

Thanks,
Andy