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Avatar universal

still recovering 3 years after craniotomy

I had a craniotomy 3 years ago to remove a haemangioma from the right thalamus of my brain which had haemorrhaged, I understand the tumour was very close to the brain stem which made this a difficult operation.  However, almost 3 years later I find I am still suffering considerably with feelings of thalamic pain, disorientation, a numb and wooden head, and most recently, excrutiting headaches.  I have two issues that I would like some help with; 1) will I ever feel 'normal' again (whenever I look at recovery times on the web, I'm informed 3 months!) and what pain relief is going to be effective on the headaches, which is safe for long term use.  I am taking paracetamol and codeine, which offer little relief.  Any assistance would be greatly appreciated.  Many thanks.
5 Responses
Avatar universal
Thalamic pain syndrome is a well described syndrome. The literature would suggest that right thalamic lesions are more likely to produce this syndrome.  Unfortunately the pain associated with this syndrome can continue. Consultation with a pain management program is recommended. Pain management programs, like the one at the Cleveland Clinic, use multiple modalities to try and control the pain symptoms. In selected cases surgery can also be performed to possibly minimize the symptoms. Medications such as Elavil, and Neurontin may provide some relief from the pain. I hope this helps.
Avatar universal
Forgot to also say, does anyone where of a web site or forum that offers detailed advice for people that have been through similar ordeals?  Many thanks.
Avatar universal
i had a brain tumor removed but in a different place-- the hypothalamus and pituitary.
we have a support group at braintrust.org
i had a craniopharyngioma

try magnesium supplemetation-- it works like the drug neurotin just mentioned but naturally.
it does wonders!
it attaches to the same receptor of action as the drug neurotin!!!

i use slow- mag because it is better absobed. you can get it over the counter. it is magnesium chloride.
do as much research as you can about magnesium-- its fascinating reading.

do not take an answer that you will suffer always. research and find the anwers. there is always a way and hope-- and solutions.

i have found most help i have received is from naturaopaths, homepathic doctors and natural alternatives such as acupuncture, cranioscaral massage, yoga and much more.
traditional medicine has helped me the least.
\please reserach these alternatives-- they look at the ROOT of your pain and system and concentrate on releasing the energy trapped in these areas. it is ahuge releif when you finally realize you can be helped and that this is a very helpful route
these practices have been around for millions of centuries and is much more relaxing and helpful to us that have had such a traumatic disease and imbalance to our systems.

you have nothing to LOOSE by researching these options-- but everything to gain

good luck!
Avatar universal
i forgot to add--- if you do the research, magnesium helps out with headcahes and pain.
i even saw a book titled
" magnesium and migraines, what doctors dont tell you"

you can find slow- mag in Walgreens.
better absorbed. do not take magnesium with a large amount of clcium or with a cal- mag supplement,

there is always an answer to your pain and problem-- dont give up trying to find what it is.
try the magnesium and research-- find maybe acupuncture or naturopath that will work with you to find good solutions to your specific body imbalances.

research magnesium and headaches
Avatar universal
Many thank for all your advice and assistant.  I am going to start looking into natural relief straight away, as I've already had amitritylene (?) and gabapentin, but can't suffer the side effects.  We don't seem to have as much assistant in the UK as USA, but I'm going to do my best to improve my quality of life.  Again.  Many thanks.
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