Hi everyone,
I had a consultation with Dr Harrington last week where he told me (much to my surprise) that I had a venous rather than AV malformation (like my previous two surgeons told me). He also told me that treatment with schlerotherapy would be low risk in my case, given that my lesion is subcutaneous. Accordingly, I have booked in for treatment on the 21st of July. Anything I should keep in mind before I go ahead? Thanks so much all!
Hello Krabo,
How many treatments are suggested to destroy the VM? What is the prognosis for your hand functionality post treatment? Many people sharing their stories on this website seem to be surprised by schlerotherapy side effects and post treatment pain. Hope the intervention has the effect you seek!
Mine's small, about 5 centimetres at most (but right in the palm so quite painful). Describe surprised? I am told that 1 treatment may be enough, 2 at most. The radiologist I am seeing said that the treatment would be low risk and unlikely to lead to skin damage.
I was all set for an embo when my neighbor's dog bit met. Perhaps the animal sensed my leg VM. it broke the skin, I needed treatment. Proceudre was postponed for months. The IR wanted to make certain that the
dog bite was healed. So stay away from dogs you don't see every day.
The neighbors were furious that I reported the animal.I have seen this dog for several yrs.
The neighborhood story was I over-reacted to a dog's playfulness. I always asked people to not let their dog jump on me or lick my face. everyone says "Me dog does not bite". So "Eileen scared the dog." But, to me, it was a hassle.i had planned to recuperate all summer. I worked in a school system. Missed the first 3 wks of school. Procedure went well and and yielded great results, my advice is cover your hand.
what testing did you have done? Congrats on the VM. I had two ulcers post-embo ulcers; minimal bleeded, just oozed a bit.AVMs are much more difficult to heal, And subcutaneos.
d
Hi eileen,
Thanks for your reply. I have had ultrasound, MRI and a biopsy in 2013. All of them suggested it was an AVM or a VM. The biopsy was just to rule out the possibility of a tumour. I don't see many dogs so the chance of a bite is low. How long did yours take to recover?
July 24 today (my birthday): How are you doing, Krabo? Assuming you kept the July 21 procedure date. Please let us know what agent(s) were used. I have had eleven sclerotherapies; but my VM is segmented with a much larger area.
How is your pain level? So many people report "easy-peasy". "The more pain, the more gain"; at least in my case. Vessels scar from within, but a process of thrombosing must occur before the vein (in your case)is occluded. Many people cover pain with Tylenol and elevation. Follow your doctor's instructions, of course, but I wonder @ putting that arm in a sling when possible? If there is throbbing and edema (swelling)then I would elevate the arm above the level of my heart when I sleep (per MD advice). I'd keep it up on 2 pillows while sleeping. Clothing with no elastic compression. Nothing to interfere with the return of bloodflow to the heart. Check for any skin breakdown. The one and only time I had alcohol as sclerosing agent, that was the time the skin became ulcerated. The alcohol had been used very superficially. No need for you to worry @ the alcohol issue, because that was 2004 and repeated studies indicated there was a strong link between alcohol agent/skin ulcer at site. I beleve its usage is prohibited now............. My point is to watch for any skin breakdowns. In 2001, I wish I had known the vein-obliteration process was to continue after hospital discharge. I became alarmed when I was not healing more and more each day. Now it is obvious that the thrombosing was needed in order to seal off that vein. Most of us want to avoid narcotic pain meds; but sometimes they are needed for a few days. If I cannot sleep thru the pain, then that is an indicator that I need something stronger than Tylenol. Altho most people are fine with Tylenol. I hope you are having an easy time. Extremities (arms) are unique in that they hang, and dependent edema can develop. Maybe a compression glove? Down the road, with MD approval.
Hi Eileen, agents used were bleomycin and STS. Hand is heavily bruised but pain is tolerable. 4 days after operation and still no sign of decrease of swelling. Mine was removed in one shot but some nerve damage was obtained. My thumb is cold but getting warmer. No ulceration but using antibiotic skin cream to prevent that.
Now attempting to sleep but in considerable nerve pain. Raising my hand via sling helps. Some throbbing with a very loose glove to keep antibacterial cream on.
Very different rates of recovery for each of my eleven. First one took a full month. And it continued to "thrombose" periodically during the next year. I was able to work; but on day #1 of thrombosing I had to take off. I would have inflammation/pain b/c the lining of the vein was dealing with superficial clotting, and that would cause even more reduction of my VM. Bear in mind, this was a huge vessel and there has been incredible improvement.
Another treatment took a summer to heal; but that was because of skin ulceration.
Sorry to hear that you have reaction similar to mine. Is the nerve pain from swelling pressing on nerves? Mine always cleared when swelling went down.
I must tell you that I was SHOCKED by my first reaction to embo. I was discharged from hospital day after treatment; somewhere in the Lincoln Tunnel the swelling was incredible. I was able to contact Dr. Rosen by cell, he calmly told me this was a good sign, and use the prescription drug as needed. Motrin etc. are great anti-inflammatories but affect bleeding. So I stuck with Tylenol and I did take the narcotic for a wk. It still hurt, but I never increased the dose! Of course, anyone who has a history of drug abuse would need to avoid narcotics. Anyway, it was snowing heavily that painful day we drove thru the Lincoln Tunnel. I actually stopped and grapped pure white snow to lessen the throbbing pain!!
Did you feel prepared for this level of pain? Would it have helped? Maybe some docs are afraid we will cancel if we know what we are in for. Subsequent embos were never that bad; the first involved the largest vein anomaly. Glad you are monitoring color of fingers.
You seem calm, compared to me in 2003. I feared something had seriously gone wrong; nowadays I would have sent a foto message.
You will wake up one day and realize "Today is not worse that yesterday." Perhaps that glorious day has already occurred. Please share that joyous moment with us! Someone down the road will read it and feel hope!
BTW, in no way do I expect you to any ?s while you are in this level of pain. Vit C is great for healing; protein is also good.Krabo, pardon my curiousity but it is really borne of concern. When you mention "Nerve damage" I am wondering if "nerve damge" is due to inflammation? My guess is that no physician would be able, at this early age, to determine any permanent or long-term nerve injury.
But perhaps my info is out-dated.
Not a problem Eileen. Pain was crazy for the first few days at times. But last night I had a bit of throbbing and a bit less pain. I take it this is a good sign.
Also, by nerve damage I just meant the numb feeling in my thumb and index finger.