Update and new symptoms

Hello all. Just realized that it has been awhile since I’ve posted and a lot of some things and a whole lot of other things hasn’t happened. I’ll try and clarify.


Since my diagnosis of a brain AVM in November after a severe headache (no bleed though thank God), I'm happy to report that my consistent headaches have either worn off or I've gotten so used to them that I don't notice them as much anymore. Unfortunately they seemed to be replaced by sporadic moments of fatigue and exhaustion. I would be able to wake up on certain days with a decent amount of energy, do nothing and then within a few hours feel as though I put in a long days work. This lasted until about a couple weeks ago when I began to notice a strange pins and needles sensation in my left forearm, wrist and fingers. I thought nothing of it and it went away after a few hours.

Last week, it returned rather strongly and after consulting with my PCP was sent to my local hospital who then decided after a CT scan to send me via ambulance to downtown Boston Brigham and Women's hospital where I stayed for three full days. It seems during another angiogram (those things suck) they found a blood clot in my AVM which somehow my oncologist said was a good thing although they did some sort of balloon thing to get rid of it. My oncologist said that the blood clot was my body's way of trying to repair the AVM although it wasn't significant enough to actually fix on its own. The tinglyness went away but it returned again this past Sunday this time all over my chest, head, neck, right arm, wrist, fingers and legs which led to another trip to the ER where I was sent home and told there was no immediate threat but to contact my neurologist. I am now awaiting a call back from him to figure out what to do next. Has anyone experienced this pins and needles sensation similar to what I'm experiencing?

The plan from here is I'm waiting (I've done a lot of that over the last few months) to hear back from my oncologist as to when my cyberknife (radiotherapy treatment) will be scheduled. Its tough to know that I'm looking at up to two years before the treatment will be effective and will have to deal with the symptoms in the meantime, but this option was the safest course of treatment as my doctor didn't recommend an embolization procedure due to the location of my AVM.

If any of you can relate to this or have had similiar experiences I would sure love to hear from you. Thanks and God bless everyone! We are all in this together.

Keith

Also, I forgot to add that I’ve now been put on Keppra as a preventative measure. I’ve never had a seizure, but the doctors felt it necessary. I find this medicine makes me very drowsy as well as somewhat dizzy. Anyone have anything they can share in relation to being on Keppra and how its affected everyday life for them?

Hi Keith
Havent been posting anything for a year, but I the have same pins and needles In my right arm and also the face goes numb.I went to the ER and the made an MRI and they told me I hade an Inflammation around my AVM, where I had GammaKnife 15 monhts ago.Anyhow Iam now waiting for an appointment to have an angio to decide how they will treat it.
Nils

Thanks Michelle…it is always good to hear someone else’s story. I have been wondering what if any side effects I’ll have to deal with after cyberknife.

Reggie said:

Hi Keith–
My husband Reggie has a brain AVM, diagnosed in 06. He didn’t have any tingling feelings but had plenty of headaches and seizures. He had gamma knife radiation therapy this past December. Hasn’t felt right since then, but not sure if it’s related to the procedure or not. He suffered a few seizures right after and also had to have a shunt revision not too long after that, as the shunt was not placed quite right and was pressing on his motor skills region, leaving him with decreased mobility on his left side. Anyway, he is still recovering, had some head aches and neck aches, but again, not sue what’s related to the gamma knife or the shunt?? He is on Zonegran right now for seizures, but he’s been on Dilantin in the past. Anyway, not sure this helps you but just wanted to reach out.

Michelle

I hate the waiting that we all have to do for appointments, etc. How long have you had the pins and needles in your arm. Just last night my left arm went numb. Very weird sensation.

Nils Hakansson said:

Hi Keith
Havent been posting anything for a year, but I the have same pins and needles In my right arm and also the face goes numb.I went to the ER and the made an MRI and they told me I hade an Inflammation around my AVM, where I had GammaKnife 15 monhts ago.Anyhow Iam now waiting for an appointment to have an angio to decide how they will treat it.

Nils