This is a question i hear the most on my support page, simply because we, Cavernous malformation patients, have been told on different occasion that surely, "this" or "that" symptoms is not related to the location of our CM in the brain. Thing is, only specialist in CM would know.
Not only have you never heard of Cavernous Malformation before, but chances are, your family doctor has never had a patient with one either. Can you imagine the massive variety of diseases and illnesses they hear about in med school? By the time you come to your doctor with a cavernous malformation, chances are he is pulling out his big medical book to refresh his memory before calling you back. Your family doctor will refer you to a neurologist right away. The neurologist will know what a CM is, but he will not necessarily have much experience with it, if any. You can read my post about "The importance of finding a specialized neurologist" just so I don't repeat myself again. haha
The reason I am bringing this up, is because I have come across so many stories of people having such a difficult time to get help!! It has been heart breaking to witness. Here are some examples:
-A young woman in her early 20's went to her neurologist with symptoms she could not explain. She was dizzier than usual, her lips were numb and she had more pressure in her head than usual. He told her that she was probably just tired, and the hot summer was bothering her head. He did not offer a MRI. She posted her concerns the following day with us, because she kept feeling worse. We encouraged her to go to the ER, which she did. She was sent home again. We didn't hear from her for about a week and were getting concerned about her. Turned out she had a stroke that same evening she was sent home and she had been in the hospital ever since.
-A woman early 30's described what sounds like Partial seizures. This is what I had. You do not lose consciousness with this type of seizure. One or both sides of your body gets very weak, with a wave/snake crawling feeling inside of you. You cant speak, and get very confused. You do not fall to the ground, and its very possible for you to have a seizure and nobody noticing. They are incredibly uncomfortable and draining, but they don't last long. She described it perfectly and several of us told her we were pretty sure she was having them. She went to see her Doctor. His response "If you do not lose consciousness, they are not seizures in any shape or form" What??? and he is a doctor?
-I have witness quite a few people passing away because they were told their Cavernoma was inoperable. Most people just believe it, go home, and I have had some people actually telling me to not tell them again that they can be helped, because their doctor told them no... It breaks my heart, but I cant force people to get the help they somehow dont want.
-People go to the ER, or their Neuro, A.L.L T.H.E. T.I.M.E to be told their symptoms are not related, that they have anxiety or that they are simply paranoid. I see it happen every single week. It is very rare that we have a member that is not turned around. Doctors cant "just" sent you for an MRI based on those symptoms. They don't know enough about Cavernoma to know that they often bleed little before they burst or bleed more heavily. A lot of us have mini strokes and did not even realize it. I understand that Doctors cant send us for MRI just based on "what if" this thing is bleeding again. They have to wait for worse symptoms, which are in this case a major stroke, or death. It is not fun, and it is not fair. That is why I cannot stress enough how important it is for you to find a Doctor that listen to you, and believe you. If you keep coming across doctors that brushes you off, move on, and find another one until you find one that listens.
A lot of us feel on our own while the Cavernoma is in our head, and after its been taken out. The very little they know about this when its in your head, remains very little knowledge when its been removed. When I saw my new neurologist for my post MRI, it was very clear that he was not sure what he was seeing. At first, he pointed at my DVA (Developmental Venous Anomaly) and said "You had 2 cavernoma and one is still there right?" I said "No, only one, you see another one" He said "hmm no wait.. hmmm not that's something else" That's when I knew it was the DVA, so I said "Yes, Dr Spetzler said I had another malformation called a DVA near the CM, and he made it safer. " He then said "Yea, yea, oh yea it shouldnt cause you any problems, you're good".
This just showed me how little most neurologist know about this, and I just have to accept this and trust that God has his hands on this and if I ever happen to have more problem with this condition, I will know. I have accepted that there is no doctors around here I can fully trust on this.
This experience taught me so much health wise. No matter what you are diagnosed with, especially something life threatening, do NOT take the words that come out of their mouth like the word of God. They do their best, but they only know, and can do , so much. Do your own research, and do not be afraid to find the BEST specialist in the country!! If your child was diagnosed with a rare condition, you would want the best doctor for her. You would not settle for a small town doctor that didn't study it and have no experience with the condition, but you would do your research and find the best in the country and you would go to him. You would move if you had to! THAT is what you have to do. I see a lot of people not seeking the best care because its more than an hour drive away, or inconvenient. Really? If you would do it for your child, do it for yourself! Be pro active.
However, doctors do not like when you come to them and try to educate them. I cant blame them, but we felt very helpless when it was so obvious that we knew more about what was going on with me than they did. To them, I was a death sentence. To me, I had learned and read of possible solutions. They were totally closed minded at them, even calling Dr.Spetzler a "drive thru surgeon". Well you know what, the "drive thru surgeon" saved my life, so it was worth the drive. haha
All of this said, here is a list of questions I find are very important for you to ask your neurologist/neurosurgeon. If you feel that he/she answered with confidence and knowledge, chances are you found a good one :) However, please check this list for the best Cavernous malformation neurosurgeon in the country. All of them have operated on the brainstem, which is always classified as inoperable by 90% of other neurosurgeons.
Also, review this list of questions to ask when you meet a new doctor.
Wednesday, August 6, 2014
It is very important to come prepared in order to feel confident that your neurologist/neurosurgeon knows about the condition. Chances are he does not know much. However, try to find a neurosurgeon that specialize in Vascular malformation/disease, and chances are he knows more.
I found that it is crucial to find a doctor that is confident in what he is talking about. If he sounds unsure, he probably have never seen a patient with this condition. Here are questions to ask:
Questions to ask your Neurologist.
- How many Cavernoma(s) do I have?
- Where in the brain is(are) my Cavernoma(s)Located?
- What does (location in which the cavernoma is located) control in the brain? (this helps you to identify new symptoms)
- I have (this and that) symptoms (don't spare anything, as little as you think it may be) Do you think its related?
- Has it bled before? (If more than one, which one (what location) bled? )
- If it bleeds again, how “bad” can it be; what deficits can I end up with?
- How much experience do you have with Cavernoma/Vascular Malformation?
- What are the signs to look for to indicate a new bleed?
- According to my current symptoms, is there anything I need to avoid? (for example, anything that would elevate my pressure, like working out or anything strenuous physically gave me simple partial seizures. I was told to avoid getting my heart rate elevated)
- If my symptoms get worse, when should i go to the ER?
- Should I come see you if I develop new symptoms?
- How often should I get a MRI?
- I do (job) for a living, is that putting me at risk?
- Should I go see a neurosurgeon?
- Can you refer me to a neurosurgeon with experiences in Vascular Malformation?
If your CM has bled, most Neurologist will want you to see a Neurosurgeon to see if surgery is an option. A lot of Neurologist will suggest the “wait and see”. I suggest that you do see a neurosurgeon anyway, just to have a better idea of everything.
Questions to ask your Neurosurgeons.
- Have you resected Cavernous Malformation before? If so, what location of the brain? How are the patients doing?
- Are you experienced in resecting cavernoma in (the location)?
- If the neurosurgeons tells you that he can, indeed, operate, ask him if he would do it strictly in case of emergency to save your life, or is he capable of performing surgery while you are still doing well, to avoid such a situation.
- What are the deficits I could have from the surgery?
- What are the deficits I can have from further bleeds, if I chose not to have surgery?
- If he is telling you to “wait and see”: What new symptoms would be an indication that surgery would be preferable?
- If I have a new bleed, would it be better to have surgery?
- If the neurosurgeons tells you it is inoperable, ask why. He will most likely say “location”
If your neurosurgeon tells you right off the bat that your CM is inoperable, this simply means that "he" cannot do it. has either never done it, or has done it with poor results, like the majority of neurosurgeons. That is why the brainstem is always "inoperable", unless you happen to have one of the best to diagnose you! There ARE Neurosurgeons that do indeed operate on the brainstem successfuly. Here is a list of the best ones. If he does tell you that he would operate if he "had to", that is simply an indication that he believe surgery to be the last resort, only to be performed as a emergency to save your life from a sudden bleed. The CONFIDENCE level of your neurosurgeon EQUAL most of the outcome! NO neurosurgeons in the world is going to tell you they can operate just for the fun of it. IF your surgeon tells you that, indeed, this is something he can do, with decent outcome and no major loss of quality of life, you can truly consider having surgery with him/her. Take the time to find out how many brainstem surgeries he/she has done and what the outcome for the patients were. Surgery is a very hard decision to make. None of us want to wait until we have a major bleed/stroke, and have to have surgery with a surgeon that does surgery simply because he was there, and save our life, but most likely leave us with severe handicaps. After many months of regrouping datas from people who chose to have surgery versus the ones who didnt, I wrote a post about my findings HERE. Maybe that could help you a little bit with this heart wrenching "damned if you do, damned if you don't" decision.
Written by Unknown at 4:10 PM