Pain in it’s various forms, unfortunately seems to be a common trait associated with Portal Vein Thrombosis (PVT). Over the past several months I have been in dialogue with others who have shared the specifics of their pain. Claire from Tasmania, Australia is one such lady who has endured much in her life due to pain associated with PVT.
Here is Claire’s story…
“I have learned much over the years about pain. My pain is based on the issue of when my portal vein became blocked. Because of that blockage, my body produced other veins around my spleen to take over the role of my portal vein ensuring that blood circulated to the various organs (especially and more specifically my spleen). Once the Portal vein burst and I hemorrhaged, it was at that point that my condition was diagnosed. My portal vein issue was slowly dealt with but the veins surrounding my spleen didn’t dissipate so in the time it took for the medical profession to figure out that I had PVT, these other veins became thromboses (engorged) as well. Unfortunately the veins will never go away.
My pain is due to an enlarged spleen and the fact that the veins surrounding the spleen are now very enlarged. At one point my spleen was reported at a size of 27 cm, with a normal size being only 10-12 cm. Due to constriction and enlargement of the spleen, I experience severe abdominal pain in the lower left hand side of the abdomen. Initially I was self medicating with alcohol combined with over the counter prescription medication until it finally took hold of me mentally. At that point I finally found myself in the office of a “pain management specialist” who, in 2005, started addressing the pain issues by trialing me on morphine, then oxycotin (the pain relief for cancer patients), morphine again, then methadone along with different enhancing meds: gabapantin, encap/clonodine etc. In May of 2008, he requested that I go into hospital and try 10 days of Ketamine (street name “special K”) however on day 6; I flipped out on the side effects and demanded to be discharged. I then tried to cope more on my own with a lot less pain meds (only methadone 5o mg dosage), but my specialist wanted me to consider another attempt of Ketamine infusion. So May last year (2009), I was admitted and started the infusion. Unfortunately the medication DID finally give me a pain-free day (Ketamine seems to be the only medication that provides the pain free relief). After only 2 days of treatment I asked to be discharged again because I again started to freak out on the side effects which unfortunately were enhanced due to 2 traumatic events of rape and sexual abuse in my past. So Ketamine has been ruled out as an option for any consideration until I am financially able to get the infusion in the safety of a single room. After I discharged myself, I went to a clinical psychologist who has been nothing short of amazing! Also went back to my specialist and asked to be provided with a more subtle pain relief that would not affect my job or daily tasks so he prescribed fentanyl patches (50 micrograms). The patches I take every three days to work in conjunction with the therapist treatments I am receiving. Recently the pain has increased so the fentanyl patches are being trialed at even a higher dose so who knows what will happen next as the patches don’t seem to be working as much as I need them to? My only wish is to be able to work hard and live a normal life as possible. Anyway, I have to live within my limits. Pain is debilitating for anyone on any level. Pain is pain and is individual to ones being.
As the result of my declining health and ever present pain, I have suffered a great deal of loss in my personal life. First I lost my daughter to her father, and secondly I lost the option of naturally conceiving children due to my condition”.
Claire went on to say in her note to me that along with working at a part time job, she is currently studying at University for a law degree. She also told me that University is keeping her sane, and it has been a good diversion from her feeling sorry for herself. Also she is newly married, and she sees her daughter a lot so that is another reason for her optimism. Ultimately Claire’s desire is that someone other than sufferers themselves, would care enough to fix the horrible condition, or at the very least, the chronic debilitating pain which accompanies portal hypertension. She requested her story be told, not the sake of pity, but that others may be educated. Claire understands…she is a survivor…and is a real inspiration to me. Keep doing what you are doing Claire … I am cheering for you!
Until next time,
Hi Clint and others,
Hope everyone is as well as can be expected. Last night (Oct.24 6:30 pst) on CTV news there was a story about a pre-schooler from Surrey with a rare medical condition(1 in 148 children in North America according to CTV)–Portal Vein Thrombosis. He is scheduled for the Rex shunt procedure in Chicago in January. Friends of the parents were fundraising to help with costs. If anyone would like to view the clip just google CTV news.
Clint, I hope your visit with Dr. Tandon was productive. I am sure you will post the highlights when you have digested the material. I have run into a bit of a snag–painful hemorrhoids, due to the re-routing of blood due to the clot. I was warned about this possibility. I have an appointment with a surgeon tomorrow to schedule banding. Meanwhile, I take my doughnut pillow with me everywhere and am following home treatment instructions. Otherwise, I am feeling good. How are you doing? The very best to you and look forward to your posts. Cheers, Audra
I just realized I misquoted the rarity of PVT in children as reported by CTV news. The Surrey pre-schooler is 1 OF 140 children in North America with this condition. Below is the link for the news clip
Sorry for the error, Audra
Hi Audra, Thanks for your posts. I wrote to the contact person in charge of fund-raising for Jacob’s family to see if they would like me to write a post on his plight, and also if there was a specific place to donate in trust to Jacob.
Secondly, I did see my doctor last Tuesday, and I am still working on a post for my site so that you and others can view her response to the questions that I asked. I was working on that article into the wee hours of the morning today, so as I result I am a little tired this evening. What she had to say about my particular case was not good at all, and as far as the answers to the questions – they were sort of what I had expected. I will try to post that article as soon as I tweak it a bit.
Take care and thanks again!
Hello Everyone! I am Jakob’s mom the preschooler from Surrey. Thank you for sharing our story. We have been so touched with everyones kindness. I would love to talk with anyone that has had a Rex Shunt and if there are any other families trying to get approval from Candain medical for approval for surgery out side of Canada. My email is firstname.lastname@example.org
thanks again for sharing our story and i will pray for everyone that they find a cure that works for everyone suffering from PVT. I will also continue to raise support and awareness for people living with PVT!
I just found this site. I have portal vein thrombosis, splenic vein
thrombosis and mesenteric vein thrombosis. This all happened
2 weeks after having my spleen removed. I lived in Michigan and
I have been unsuccessful with getting ANY help from the doctors
I have seen. I am in terrible pain, nausea and can’t eat because of
stomach pain. I desperately need help and if you can shed any
light or any doctor/hospital suggestions I would greatly appreciate it. Looking forward to hearing from you. Thanks for any info you
can share with me.
Thanks for your comments and inquiry. Always sorry to learn of new people with our common condition, but happy you have found this site and to say that you are not alone in the battle! Here is a link from my site where you can hopefully find a doctor to at least guide you to where you might be able to go for help: http://www.portal-hypertension.com/2011/03/17/rex-shunt-procedure-specialist-list/
On the list is the name of a doctor in New York by the name of Dr. Jean Emond who may be able to direct you to a specialist in your area, or you may also want to contact Dr. Superina at Children’s Memorial Hospital in Chicago. Dr. Superina does preview adult cases, but he is by far the most renowned specialist for his work with children regarding the Rex Shunt procedure. Not to discourage you, but the Rex Shunt is works best on Children under the age of 5 with limited atrophy of the portal vein. There is another procedure that I have not discussed on my site yet which is called the Sugiera Procedure which is also rare, but if you look for anything on the net it is very technical in nature. There is a 12 year old boy in Chicago right now that Dr. Superina is considering for this procedure as the Rex Shunt he had failed in his case, so we are waiting to hear what the next step may be for him.
Why did you have your spleen removed in the first place – I am just curious? How did get PVT – if you also don’t mind me asking? Are not your doctor’s doing anything for the severe pain you are experiencing? I know this sounds relatively simple, and until you get more concrete answers (I’ll pray), but have you tried taking oil of peppermint for your stomach pain? It is not the be all to end all for pain relief, but maybe it will help at least a little? You should be able to pick up some Oil of Peppermint in your local health store, and I would suggest you put a few drops of oil in a cup of warm water and sip it down – sort of like a tea. It is very strong so remember to keep your eyes away from the steam. I never tell people to take anything except for what a doctor may prescribe, but something like this may curb some of your pain? Ginger can also be good for nausea, or you may want to try gravol – keeping in mind that it may make you very tired during the day. These are just a few over the counter type remedies – I certainly hope you get relief soon!
Worldwide the standard treatment protocol for portal hypertension seems to be the use of Propanol or Nadolol (beta blockers) to lower pressure to prevent bleeding from any varices that form due to the clot. You may not be at that stage yet, but the use of that med plus a blood thinner is what usually is prescribed. The other thing I wanted to ask is if you are on a med that eliminates stomach acid – this may also help with your nausea and maybe your pain? I am on a medication called Dicetel for that, and there are other drugs I am on which play into the whole mix of treating this condition.
Also … there is a Facebook site that was set up by a gal by a fellow Canuck who lives out in Vancouver. I don’t have the address for it, but it you have a FB account you can view the site by going to Portal Vein Thrombosis and Portal Hypertension in Children and Adults. There is some excellent dialogue on that site and you will even find some of my posts.
All the best in your journey (you are not alone)!